| Original Full Text | 1 Becoming Open to Death Communication: A Constructivist Grounded Theory Study Exploring the Process Behind how Individuals Begin to Actively Think and Openly Talk About Death and Dying Kathryn Radley PhD Thesis February 2024 Word count 104,037 University of Huddersfield 2 Abstract Death is an inevitable natural part of human existence; however, research suggests that there is a reluctance to actively think about and engage in death-related discussions within the UK (Co-Op, 2018; Biscuit Tin, 2021; The Academy of Medical Science and Ipsos Mori, 2019; Sue Ryder, 2019). Previous research has mainly focused on facilitating death-related conversations with those that are elderly or terminally ill (Amjad et al., 2014; Bernard et al., 2020; Glaudemans et al., 2020; Im et al., 2019; Klemmt et al., 2020; Peterson et al., 2018; Stone et al., 2013); therefore, there is a need to explore how openness to death communication can be achieved by within the general population. This study aimed to explore the process behind how individuals become open to death communication. A constructivist grounded theory approach was used to analyse the data of 40 participants. The findings revealed four major categories that contributed towards participants' openness towards death, 'Death-related experiences', 'Recognising the benefits of openness', 'Exploring their relationship with death' and 'Conditions and context for openness'. Two key findings presented in the study are that the perceived social belief that death is taboo can hinder and sometimes prevent death-related conversations from occurring, and becoming more open to death can lead individuals to live life more meaningfully (this realisation plays a part in continued openness towards death). The findings of this grounded theory study can be used to inform education policy, training programmes, death positive groups and public health initiatives on how to encourage individuals to become more open to death communication. The findings indicate that developing a communication strategy of key themes and messages about the life-enhancing impact of death awareness could promote openness to death communication. Moreover, the study recommends that public health initiatives and death positive groups should be urged to change the narrative around death as a taboo in order to prevent reinforcing the idea that death should not be discussed. Furthermore, the findings endorse the need for death education in schools. Further research is needed to explore the influence of disseminating information about the life-enhancing impact of death awareness on openness to death communication. 3 Acknowledgments I am very grateful to my supervisors Professor Nigel King and Professor Nadia Wager for their constant encouragement and support throughout my PhD. I would also like to thank Dr Salley Arrey and Dr Mary Turner for their support and feedback. I would also like to thank the participants for their essential contribution to this research. Finally, I would like to thank my wonderful family Wilbur, Janet, James, Teddy and Isaac. 4 Contents Abstract .................................................................................................................................................. 2 Acknowledgments .................................................................................................................................. 3 List of Figures .......................................................................................................................................... 8 List of Tables ........................................................................................................................................... 9 Terminology .......................................................................................................................................... 10 Publications Arising From the Thesis ................................................................................................... 11 Introduction .......................................................................................................................................... 12 Background and Framing the Research Question ........................................................................... 12 Outline of the Thesis ........................................................................................................................ 14 Chapter One: Death Communication: A Scoping Review ................................................................... 16 1.1. Method ...................................................................................................................................... 16 1.2 Theme One - Barriers to Death Communication ....................................................................... 24 1.2.1 Barriers to Death-related Conversations with Older Individuals ......................................... 25 1.2.2 Barriers to Death-related Conversations in Populations with Life limiting-Conditions ....... 32 1.2.3 Barriers to Death Communication across the Lifespan ....................................................... 33 1.2.4 Barriers to Death-related Conversations with the General Public (UK) .............................. 34 1.2.5 Barriers to Death-related Conversations among young adults ........................................... 37 1.2.6 Barriers to Death-related Conversations with those recently bereaved ............................. 38 1.2.7 Overview .............................................................................................................................. 38 1.3 Theme Two - Facilitators for Death Communication ................................................................ 40 1.3.1 Facilitators Experienced by Participants .............................................................................. 40 1.3.2 Facilitators Suggested by Participants ................................................................................. 43 1.3.3 Overview .............................................................................................................................. 45 1.4 Theme Three - Death Communication Interventions ............................................................... 46 1.4.1 Online Death Communication Courses ................................................................................ 47 1.4.2 Conversational Card Games ................................................................................................. 49 1.4.3 Death Communication Workshops ...................................................................................... 52 1.4.4 Overview .............................................................................................................................. 56 Chapter Two: Narrative Literature Review ......................................................................................... 59 2.1 Introduction ................................................................................................................................ 59 2.1.1 Search Strategy .................................................................................................................... 61 2.2 The Benefits of Openness .......................................................................................................... 61 2.3 A Public Health Approach to Palliative Care ............................................................................. 66 2.4 Death-Related Fears and Anxieties ........................................................................................... 67 2.5 The Death ‘Taboo’ ...................................................................................................................... 70 5 2.6 The Death Positive Movement .................................................................................................. 72 2.7 Research Aims and Objectives ................................................................................................... 74 2.7.1 Study Rationale .................................................................................................................... 74 2.7.2 Research Aims ...................................................................................................................... 78 2.7.3 Research Objectives ............................................................................................................. 78 Chapter Three: Methodology .............................................................................................................. 79 3.1 Introduction ................................................................................................................................ 79 3.2 Ontology ..................................................................................................................................... 79 3.3 Epistemology .............................................................................................................................. 81 3.4 The History and Development of Grounded Theory ................................................................. 82 3.4.1 Constructivist Grounded Theory (CGT) ................................................................................ 84 3.5 Methodological Choice: Constructivist Grounded Theory ........................................................ 86 Chapter Four: Methods ........................................................................................................................ 88 4.1 Introduction ................................................................................................................................ 88 4.2 Summary of Research Participants ............................................................................................ 88 4.3 The Initial Sample ....................................................................................................................... 89 4.3.1 The Sample ........................................................................................................................... 89 4.3.2 Recruitment ......................................................................................................................... 90 4.3.3 Data Collection ..................................................................................................................... 92 4.4 Theoretical Sampling (Stage One) ........................................................................................... 100 4.4.1 The Sample (Theoretical Sampling- Stage One) ................................................................. 100 4.4.2 Recruitment (Theoretical Sampling- Stage One) ............................................................... 101 4.4.3 Data Collection (Theoretical Sampling- Stage One) ........................................................... 104 4.5 Theoretical Sampling (Stage Two) ........................................................................................... 106 4.5.1 The Sample (Theoretical Sampling - Stage Two) ................................................................ 106 4.5.2 Recruitment (Theoretical Sampling - Stage Two) .............................................................. 107 4.5.2 Data Collection (Theoretical Sampling - Stage Two) .......................................................... 110 4.6 Ethical Considerations .............................................................................................................. 112 4.6.1 Ethical Amendments .......................................................................................................... 113 4.7 Data Analysis ............................................................................................................................ 114 4.7.1 Constructivist Grounded Theory Methods of Data Analysis .............................................. 114 4.7.2 Data Analysis Within This Study ......................................................................................... 116 4.8 Reflexivity ................................................................................................................................. 135 4.8.1 Methodological Reflections ............................................................................................... 135 4.8.2 Personal Reflections ........................................................................................................... 136 5 Chapter Five: Findings ..................................................................................................................... 138 6 5.1 Introduction .............................................................................................................................. 138 5.2 The Core Concept of Openness ‘Actively Thinking and Openly Talking’ ................................ 138 5.3 Death-related Experiences ....................................................................................................... 140 5.3.1 Spiritual Experiences .......................................................................................................... 141 5.3.2 Near-death Experiences (NDEs) ......................................................................................... 146 5.3.3 Experiences at Work .......................................................................................................... 149 5.3.4 Being Faced with Their Own Potential Death .................................................................... 152 5.3.5 Being Faced with the Potential Death of Others ............................................................... 154 5.3.6 Experiencing the Death of a Loved One ............................................................................. 155 5.3.7 Experiencing the Complicated Bereavements of Others ................................................... 165 5.4 Recognising the Benefits of Openness .................................................................................... 166 5.4.1 Preparing Practically for Death .......................................................................................... 168 5.4.2 Tackling Fears around Death and Dying............................................................................. 175 5.4.3 Recognising the Benefits of Death-related Conversations with Children .......................... 179 5.4.4 Coping with Bereavement ................................................................................................. 182 5.5 Exploring Their Relationship with Death ................................................................................. 183 5.5.1 Exploring and Addressing Fears Around Death and Dying ................................................ 188 5.5.2 Exploring After-death Beliefs ............................................................................................. 200 5.5.3 Enabling Individuals to Live Life More Meaningfully ......................................................... 209 5.6 Conditions and Context for Openness ..................................................................................... 211 5.6.1 Different Aspects of Death ................................................................................................. 212 5.6.2 Conditional Openness ........................................................................................................ 215 5.6.3 Influence of Perceived Societal Beliefs .............................................................................. 216 5.6.4 Others Unwilling to Engage in Death-related Conversations ............................................ 220 5.6.5 Promoting More Openness ................................................................................................ 223 5.7 The Grounded Theory .............................................................................................................. 226 Chapter Six: Discussion ...................................................................................................................... 236 6.1 Introduction .............................................................................................................................. 236 6.2 The Impact of Death-related Experiences on Openness ......................................................... 236 6.2.1 Post-traumatic Growth ...................................................................................................... 237 6.2.2 Working in a Death-related Field ....................................................................................... 239 6.2.3 Spiritual and Near-death Experiences ............................................................................... 242 6.3 Encouraging Others to Recognise the Benefits of Openness .................................................. 245 6.4 Terror Management Theory (TMT) and Meaning Management Theory (MMT) ................... 247 6.5 Openness with Children Towards Death ................................................................................. 248 6.6 Death Education in Schools...................................................................................................... 250 7 6.7 Engaging with the Subject of Death ........................................................................................ 251 6.8 Engaging with the Death Positive Movement ......................................................................... 253 6.9 Barriers to Openness ................................................................................................................ 255 Chapter Seven: Conclusion ................................................................................................................ 259 7.1 Introduction .............................................................................................................................. 259 7.2 Strengths and Limitations ........................................................................................................ 259 7.3 Evaluating the Grounded Theory ............................................................................................. 261 7.3.1 Credibility ........................................................................................................................... 261 7.3.2 Originality ........................................................................................................................... 262 7.3.3 Resonance .......................................................................................................................... 263 7.3.4 Usefulness .......................................................................................................................... 265 7.4 Implications for Practice and Further Research ...................................................................... 265 7.5 Key Findings and Contributions to Knowledge ....................................................................... 272 7.5.1 Key Findings ....................................................................................................................... 272 7.5.2 Contributions to Knowledge .............................................................................................. 272 7.6 Summary ................................................................................................................................... 272 References .......................................................................................................................................... 273 Appendices ......................................................................................................................................... 296 Appendix 1 – Background Information on All Participants ............................................................ 296 Appendix 2 – The Interview Schedule ............................................................................................ 298 Appendix 3 – Information Sheet (Initial Sample) ........................................................................... 300 Appendix 4 – Potential Interview Questions .................................................................................. 302 Appendix 5 – Participant Consent Form (Initial Sample) ............................................................... 304 Appendix 6 – Background Questionnaire ....................................................................................... 307 Appendix 7 – Approved Ethics Application .................................................................................... 308 Appendix 8 – Debrief (Initial Sample) ............................................................................................. 319 Appendix 9 – Theoretical Sampling Recruitment Poster (Stage One) ............................................ 320 Appendix 10 – Information Sheet (Theoretical Sampling - Stage One) .......................................... 321 Appendix 11 – Theoretical Sampling - Consent Form .................................................................... 324 Appendix 12 – Theoretical Sampling (Stage One) Debrief ............................................................. 327 Appendix 13 – Ethical Revisions (Theoretical Sampling) ................................................................ 328 Appendix 14 – Theoretical Sampling Recruitment Poster (Stage Two).......................................... 337 Appendix 15 – Information Sheet (Theoretical Sampling – Stage Two) ......................................... 338 Appendix 16 – Theoretical Sampling (Stage Two) Debrief ............................................................. 341 Appendix 17 – Transcript (Example)............................................................................................... 342 Appendix 18 – Initial Coding (Example) .......................................................................................... 354 8 Appendix 19 - First Memo Recoded about COVID-19 .................................................................... 356 Appendix 20 – Mind Map (Example) .............................................................................................. 357 Appendix 21 – Memo Recoded on the Most Frequent and Significant Codes Developed from Participant Ones Data ..................................................................................................................... 360 Appendix 22 – Analytical Memo Recorded on the Tentative Category ‘Recognising the Benefits of Thinking and Talking about Death and Dying’ ................................................................................ 361 Appendix 23 – Written Account (Example) .................................................................................... 362 Appendix 24 – Outline of the Categories and Sub-categories that Form the Grounded Theory ... 372 List of Figures Figure 1 – The Selection Process .........................................................................................................19 Figure 2 – Recruitment Process (Initial Sample) ..................................................................................91 Figure 3 – Humorous recruitment poster for theoretical sampling (Stage 1) ...................................102 Figure 4 – Gothic recruitment poster for theoretical sampling (Stage 1) ..........................................102 Figure 5 – Recruitment Process - Theoretical Sampling (Stage One) ................................................ 103 Figure 6 – Recruitment Process - Theoretical Sampling (Stage Two) ................................................109 Figure 7 – Memo depicting the influence of COVID-19 on how participants thought and talked about death and dying .................................................................................................................................119 Figure 8 – Memo exploring the possibility of multiple processes to actively thinking and openly talking ................................................................................................................................................120 Figure 9 – Example mind map (initial sample) -Page 1 ......................................................................121 Figure 10 – Example mind map (initial sample) -Page 2 ....................................................................121 Figure 11 – Example mind map (initial sample) -Page 3 ....................................................................121 Figure 12 – Conceptual mind map (Screenshot one) .........................................................................124 Figure 13 – Conceptual mind map (Screenshot two) ........................................................................124 Figure 14 – Conceptual mind map (Screenshot three) ......................................................................124 Figure 15 – Timelines created for the initial sample .........................................................................127 Figure 16 – Memo on the core category ‘Openness’ .........................................................................128 Figure 17 – Memo recorded on the category ‘Death-related experiences’ outlining questions for further empirical enquiry ...................................................................................................................129 Figure 18 - Data Analysis Procedures Employed in This Grounded Theory Study .............................134 Figure 19 – Diagram demonstrating the relationship between the major categories and the core concept of openness ..........................................................................................................................139 Figure 20 – Illustrating the influence of spiritual experiences on participants openness .................142 Figure 21 – Illustrating the influence of NDEs on participants openness ..........................................146 9 Figure 22 – Illustrating the influence of work-related experiences on participants openness .........149 Figure 23 – Illustrating the influence of being faced with their own potential death on participants openness ............................................................................................................................................153 Figure 24 – Illustrating the influence of being faced with the potential death of others on participants openness ............................................................................................................................................154 Figure 25 – Illustrating the influence of experiencing the death of a loved one on participants openness ............................................................................................................................................156 Figure 26 – Illustrating the influence of experiencing the complicated bereavements of others .....165 Figure 27 – Diagram illustrating how recognising the benefits of openness has contributed to participants openness around death and dying ................................................................................168 Figure 28 – Diagram illustrating how exploring their relationship with death contributed to participants openness ........................................................................................................................188 Figure 29 – Diagram demonstrating the conditions and contexts that influence the core category of openness ............................................................................................................................................212 Figure 30 – Diagram demonstrating how recognising the benefits of openness contributes to participants continued openness towards death and dying ..............................................................229 Figure 31 – The theoretical model .....................................................................................................235 List of Tables Table 1 – Scoping Review Inclusion and Exclusion Criteria ................................................................. 18 Table 2 – Studies Included in the Review ............................................................................................20 Table 3 – Key Differences Among the Most Widely Used and Developed Grounded Theory Approaches ..........................................................................................................................................84 Table 4 – Number of Participants Recruited in the Initial and Theoretical Samples ...........................88 Table 5 – Inclusion and Exclusion Criteria for the Initial Sample .........................................................90 Table 6 – Advantages and Disadvantages of Internet-based Recruitment Strategies .........................92 Table 7 – Length of Interviews Conducted in the Initial Sample .........................................................93 Table 8 – Advantages and Disadvantages of Internet-based Interviews .............................................99 Table 9 – Inclusion and Exclusion Criteria for Theoretical Sampling (Stage One) .............................101 Table 10 – Inclusion and Exclusion Criteria for Theoretical Sampling (Stage Two) ...........................107 Table 11 – Revised Initial Codes ........................................................................................................117 Table 12 – Codes Underpinning the Theme ‘Engaging with the Subject of Death’ ...........................123 Table 13 – The Tentative Focused Codes Derived from the Initial Analysis ......................................125 Table 14 – The Revised Theoretical Categories and Subcategories in the Final Theoretical Model ..113 Table 15 – Sources of Information about Death and Dying Explored by Participants .......................185 10 Terminology Openness towards death - The concept of openness is categorised as actively thinking and openly talking about death and dying. Actively thinking and openly talking are terms employed to denote what happens when individuals become more open to death communication. 11 Publications Arising From the Thesis Radley, K., King, N., & Wager, N. (2023). A thematic analysis investigating the impact of COVID-19 on the way people think and talk about death and dying. Mortality. The data for this article came entirely from my doctoral research and the analysis was carried out by me. My supervisors, as co-authors, guided me with the structure and writing of the article. 12 Introduction Background and Framing the Research Question Death is an inevitable natural part of human existence; however, research suggests that there is a reluctance among the public in the United Kingdom (UK) to actively think about and engage in death-related discussions (Biscuit Tin, 2021; Co-Op, 2018; Sue Ryder, 2019; The Academy of Medical Science and Ipsos Mori, 2019). For example, the UK’s most extensive survey into attitudes towards death and dying within the general population found that eighteen million people living in the UK were uncomfortable engaging in death-related discussions (Co-Op, 2018). Supporting this, a survey by Sue Ryder (2019) revealed that 70% of the UK population have not discussed death and dying with close family and friends. Most research into individuals’ preparedness to actively think and openly talk about death and dying holds the assumption that death is taboo; however, there is conflicting evidence from surveys conducted in the UK to suggest that death-related conversations are avoided (Biscuit Tin, 2021; British Social Attitudes Survey, 2012; Co-Op, 2018; Marie Curie, 2021; Sue Ryder, 2019; The Academy of Medical Science and Ipsos Mori, 2019). Some surveys suggest that the population is death-averse (Biscuit Tin, 2021; Sue Ryder, 2019; The Academy of Medical Science and Ipsos Mori, 2019), whereas others report that the majority of people are comfortable engaging in death-related conversations (British Social Attitudes Survey, 2012; Marie Curie, 2021). For example, two surveys conducted almost ten years apart by the British Social Attitudes Survey (2012) and Marie Curie (2021) reported that 70% of the population was comfortable engaging in death-related conversations. Although 70% is a large proportion of the population, that still leaves 20.7 million people living in the UK who feel uncomfortable engaging in death-related discussions. However, other surveys have shown that death-related conversations are avoided within the UK. For example, a survey conducted by Biscuit Tin (2021), the first digital legacy vault in the UK, found that 41% of participants reported feeling uncomfortable with death-related conversations was the main reason they had not spoken to family and friends about end-of-life plans. Although a small number of surveys have indicated that most people living in the UK are comfortable engaging in death-related conversations (British Social Attitudes Survey, 2012; Marie Curie, 2021), research suggests that this expressed comfort is not translated into actual discussions around planning for the end of life (British Social Attitudes Survey, 2012; Dying Matters, 2016; Marie Curie, 2021). For example, a survey commissioned by Marie Curie (2021) revealed that 74% reported feeling comfortable discussing their end-of-life wishes with others; however, only 14% have initiated such conversations (Marie Curie, 2021). 13 Similarly, a Dying Matters (2018) survey revealed that only 47% of people have talked to their loved ones about end-of-life wishes, even though 80% would like to do so. Cross-sectional surveys are helpful in examining the general public’s attitudes towards death; however, such methods fail to explain how openness towards death communication can be achieved in the first place. Additionally, the survey conducted by Marie Curie (2021) reported that 51% of those living in the UK believe that, as a society, we do not talk about death enough. This could suggest that a more holistic approach is needed to determine why individuals are not engaging in death-related discussions instead of assuming that people are uncomfortable engaging in them. Avoiding actively thinking and openly talking about death can have many negative implications, such as preventing individuals from receiving their chosen end-of-life care (MacKenzie & Lasota, 2020), increasing death-related fears and anxiety and contributing to psychological distress in surviving family members (Detering et al., 2010). However, actively thinking and openly talking about death has many tangible benefits, such as reducing death-related fears (Buckle, 2013; Department of Health, 2008), helping individuals feel more in control of their end-of-life care (Department of Health, 2008; Detering et al., 2010), increasing death acceptance (Lekes et al., 2022) and fostering a greater appreciation for life (Buckle, 2013; Lekes et al., 2022). There has been increasing effort to promote public discussion on death, dying, and bereavement through a range of initiates and organisations (e.g., Death Café; Death Over Dinner; The Order of the Good Death), which are collectively referred to as the ‘death positive movement’. Recent research suggested that attitudes towards death may shift as new cultural trends, such as the death positive movement, increase in popularity (Brooks, 2020). The death positive movement is trying to normalise death-related conversations by allowing people to share and talk openly about all things death-related. Despite efforts to encourage a national conversation around death and dying (Henry, 2015), research suggests that there remains a significant percentage of the population that find these conversations challenging to initiate and partake in (Biscuit Tin, 2021; Co-Op, 2018; Sue Ryder, 2019; The Academy of Medical Science and Ipsos Mori, 2019). Although research indicates that people are not engaging in death-related conversations, there has been little research examining how individuals become open to actively thinking and talking about death and dying. As a result, this study aimed to explore the process behind how individuals become open to death communication. Hence, within the context of this thesis, actively thinking and openly talking are terms employed to denote what happens when individuals become more open to death communication. Actively thinking is defined as thinking about and engaging in conscious, focused thought on the subject of death and dying. Distinct from reactive thinking, which is undertaken 14 without pre-emptment, active thinking involves thinking about death on a deeper level. In addition, openly talking is defined as verbally expressing thoughts, feelings and ideas about death and dying without reservation. By exploring the thought and conversation processes that lead individuals towards actively thinking and openly talking about death and dying, this thesis aims to explore the process behind how individuals become open to death communication. Outline of the Thesis The Introduction has presented the background to the research topic. This chapter examined the significance of exploring how individuals become open to death communication in order to justify research into this subject and provide a brief overview of the structure of this thesis. Chapter One (Scoping Review) consists of a scoping review outlining the available evidence on death communication. A scoping review was conducted to assess what is currently known about openness to death communication. In doing so, I explored the topic of death communication broadly, thus providing background and context for the research question. The scoping review revealed three core themes around openness towards death communication: Barriers and Facilitators to Death Communication, Individual Differences in Death Communication and Death Communication Interventions. Chapter Two (Narrative Literature Review) details the different grounded theory approaches to conducting the literature review and the approach taken in this study. This chapter presents the narrative literature review which was conducted post-analysis. The narrative review draws on research that relates directly to the findings of the current study. Drawing on previous research I situate the research questions within the existing literature and provide a rationale for why this is an important topic to explore further. Following this, I present the research aims and objectives. Chapter Three (Methodology) outlines the philosophical underpinnings of the research. I present my ontological perspective of how I view social reality (what existence is, what knowledge is, what the reality is) and my epistemological view, my view of how knowledge can be gained (how to access that knowledge, what methods are needed to better understand my research topic). I then justify my choices and provide a rationale for using qualitative methods. In addition, I also explain the different approaches to grounded theory, examining their similarities and differences. Following this, I provide justification for using constructivist grounded theory in this study. Chapter Four (Methods) The focus of chapter four is to discuss the study's design, including sampling and recruitment, ethical considerations, data collection and analysis. 15 Chapter Five (Findings) introduces the core category of this grounded theory. The core category is explained along with the social process at work within the core category. Following this, I present the findings and provide an explanation of the theoretical model developed from this grounded theory study. Figures and diagrams are used to illustrate and summarise the fundamental ideas that emerged from the findings. Chapter Six (Discussion) focuses on placing the developed grounded theory within the existing literature. This chapter begins with a summary of the developed grounded theory followed by a critical evaluation of how the grounded theory makes its own valid contribution to the existing knowledge in this field. Chapter Seven (Conclusion) looks at the strengths and limitations of this study. I then use Charmaz’s criteria for evaluating grounded theory studies to demonstrate the credibility, originality, resonance and usefulness of the developed grounded theory. Lastly, I discuss the implications for practice and further research before reiterating the key findings of this grounded theory study. 16 Chapter One: Death Communication: A Scoping Review A scoping review gives the reader an outline of the available evidence on a particular topic (Sucharew & Macaluso, 2019). Munn et al. (2018) assert that using a scoping review framework can help achieve the following: • Identify existing evidence in a specific field. • Explore how previous research has been conducted. • Clarify key terms and definitions and identify gaps in existing knowledge. A scoping review is beneficial when the information on a specific subject, such as openness towards death communication, has not been thoroughly reviewed in recent years (Arksey & O'Malley, 2005). Therefore, a scoping review was conducted to assess what is currently known about how individuals become open to death communication. 1.1. Method This scoping review follows Arksey and O'Malley's (2005) five-step framework. Arksey and O'Malley's (2005) five-step framework includes the following stages: identifying the research question, identifying the relevant studies, study selection, charting the data and organising, summarising and reporting the results. Stage one involved identifying a broad yet clearly defined research question to provide extensive coverage of the research topic. The aim of the current study, to explore the process behind how individuals begin to become open to communicating about death and dying, was used to guide the scoping review. The research question: What is known from the existing literature about how individuals become open to death communication? Stage two involved identifying the relevant literature. At this stage, I began to consider what databases to search and search terms to use in order to refine the search strategy. The review was performed with the guidance of a research librarian at the University of Huddersfield from July to October 2023. Comprehensive searches were conducted in three electronic databases (PsycINFO, MEDLINE and CINAHL) using the following search terms: “Preparation OR willingness OR preparedness OR open OR openly OR openness OR readiness AND Talk OR talking OR speak OR communication OR communicate OR discuss OR discussing OR discussions OR chat OR discourse OR conversations 17 AND Death OR dying OR mortality OR end of life AND General public OR people OR populace OR community”. After consulting with the librarian, it was decided that only three databases would be searched as PubMed produced over one thousand results for the above search terms; therefore, potentially relevant articles may not have been identified. Stage three involved selecting the relevant studies. During this stage, it was important to consider the exclusion and inclusion criteria for the study selection process. Articles had to meet the following criteria to be selected for the review: Table 1 - Scoping Review Inclusion and Exclusion Criteria No limits were placed on the search in relation to gender and health status in order to assess death communication among the general public. Studies before 2013 were excluded in order to survey the contemporary context. Searches were also limited to English-language publications due to the cost and time it would take to translate the work. Due to varying cultural differences in attitudes towards death and dying, studies were limited to Westernised countries. Moreover, as the study aimed to explore death communication among the general public and not those who deal professionally with death and dying, professional communication literature (i.e., professional to professional and professional to client/patient/carer) was excluded. All articles that met the inclusion criteria were read in full to decide whether they should be included in the final review. Of the original 1521 articles, 35 were included in the scoping review. In addition, reference lists were checked to ensure all relevant literature was included in the scoping review. A further three papers were identified via this method. Studies identified through reference checking were only included if they pertained information on attitudes towards death communication within the UK. A flowchart detailing the selection process can be seen in Figure 1. Inclusion criteria Exclusion criteria • Studies conducted between 2013 to 2023 • Limited to English-language publications • Adults: 18+ years • Studies conducted before 2013 • Non-English-language publications • Professional/patient and professional/professional conversations • Non-western studies • Children and adolescents 18 Figure 1 - The Selection Process Stage four involved charting the data. During this stage, relevant data were extracted from the studies identified in stage three. The information gathered was recorded in multiple tables which formed the basis of the analysis. The tables produced summarised the essential characteristics of the identified studies followed by information about sample size, population, research methods and location. The final stage involved organising, summarising and reporting the results. After charting the data, the findings were communicated in a narrative account of the existing literature. The scoping review revealed three core themes around openness towards death communication: Barriers to Death Communication, Facilitators for Death Communication and Death Communication Interventions. Articles identified through database searching (n= 1521) Articles rejected at title screening (n=1251) Articled identified for possible inclusion (n= 270) Articles rejected at abstract screening (n= 128) due to: Duplication (n= 48) Irrelevant (n= 80) Full text articles assessed for eligibility (n= 142) Articles rejected at text screening due to not meeting the inclusion criteria (n= 104) Studies meeting inclusion criteria and included in review (n= 35) Qualitative (n= 16) Quantitative (n= 8) Mixed methods (n= 14) Articles identified through reference checking (n= 3) Total number of studies included in the review (n= 38) 19 Each theme is discussed in detail in the following section. Table 2 below provides an outline of each of the studies included in the review, including the country in which the study was conducted, the research design, the population and the type of intervention used. Table 2 – Studies Included in the Review Study Country Method Population Relevance to the review Amjad et al. (2014) USA Quantitative method - (Observational cohort study) - survey (Older individuals aged 60 and older recruited from physician offices and a senior centre) Facilitators to Death Communication Bachner et al. (2014) Israel Quantitative method - structured questionnaire (Spousal caregivers of terminally ill cancer patients (Jews of Sephardi origin and Jews of Ashkenazi origin) Barriers to Death Communication Banner et al. (2019) Canada Qualitative method - Focus groups/ interviews/ community consultations (Community members, stakeholders and older adults) Barriers and Facilitators to Death Communication Betker et al., 2021) Germany Quantitative design – questionnaires (Terminally ill cancer patients) Barriers to Death Communication Bernard et al. (2020) Canada Mixed method - (cross-sectional study) questionnaire (closed-ended questions followed by three probing open-ended questions) (Older population) Barriers to Death Communication Boerner et al. (2021) USA Mixed methods - (multinomial logistic regression) (Older individuals) Barriers to Death Communication 20 Interviews/longitudinal survey Carmel et al. (2020) Israel Quantitative method - (correlational study) – structured questionnaire (Spousal caregivers of terminally ill cancer patients (Jews of Sephardi origin and Jews of Ashkenazi origin) Barriers to Death Communication De Souza et al. (2020) The UK, USA and Canda Qualitative method - Meta-ethnography (Ethnic minority elders and their family members) Barriers to Death Communication Fleming et al. (2016) UK Qualitative method - Interviews (Older population - aged 95 – 101 and their proxy informants) Barriers and Facilitators to Death Communication Fried et al. (2017) USA Qualitative method - (cross-sectional study) - interviews (Primary care patients and their surrogate decision- makers) Barriers and Facilitators to Death Communication Glaudemans et al. (2020) Netherlands Qualitative method - Semi-structured interviews (Older individuals and their family members) Barriers and Facilitators to Death Communication Graham-Wisener et al. (2022) UK (Northern Ireland) Qualitative method - Analysis of two open-ended questions within a cross-sectional online survey (General public) Barriers and Facilitators to Death Communication Im et al. (2019) Canada Qualitative method - semi- structured interviews (conducted individually or as dyads) (Older adults with heart failure and their family caregivers) Barriers to Death Communication Islam et al. (2020) UK (Wales) Mixed method - Online survey (open and closed questions) (General public) Barriers and Facilitators to 21 Death Communication Jakoby (2014) Germany Quantitative method - Online survey (Individuals that have been bereaved in the last six years) Barriers to Death Communication Jeong et al., 2015 Australia Quantitative method - Cross-sectional survey (Older individuals from culturally and linguistically diverse backgrounds) Barriers to Death Communication Klemmt et al. (2020) Germany Qualitative method - Interviews (Older population and their relatives) Barriers and Facilitators to Death Communication McIlfatrick et al. (2021) UK (Northern Ireland) Mixed method - cross-sectional survey/focus groups and interviews (General public) Barriers and Facilitators to Death Communication Peterson et al. (2018) USA Qualitative method - focus groups (Older non-Hispanic White, African American, and Hispanic individuals) Barriers and Facilitators to Death Communication Reich et al., 2022 USA Mixed method - Survey/interviews (Sexual and gender minority people) Barriers to Death Communication Reigada et al. (2021) Spain Qualitative method - Focus groups (Young adults) Barriers and Facilitators to Death Communication Sanders et al. (2019) USA Qualitative method – Interviews/focus groups (Health disparities experts, community-Barriers and Facilitators to 22 dwelling African Americans and seriously ill African Americans and their caregivers) Death Communication Stone et al. (2013) UK Qualitative method - (descriptive study) semi-structured interviews (Elderly individuals, their relatives and nursing staff) Barriers and Facilitators to Death Communication Wilson et al. (2022) UK Qualitative method - Focus groups (General public) Barriers and Facilitators to Death Communication de Vries et al., 2019 Canada Qualitative method - Focus groups (Older LGBT individuals) Barriers and Facilitators to Death Communication Abba et al. (2019) UK Mixed method - Three-stage follow-up survey (pre intervention, post intervention and three months follow-up) (open and closed questions) Type of intervention (Workshops) (General public) Death Communication Interventions Barrison and Davidson (2021) USA Mixed method - Three-stage follow-up survey (pre intervention, post intervention and 2-week follow-up) Type of intervention (Workshop) (Young adults) Death Communication Interventions Bollig et al. (2021) Germany, Switzerland and Astria Mixed method - (General public) Death Communication Interventions 23 Questionnaire (including both quantitative and qualitative data) – open and closed questions. Type of intervention (Online course) Carney et al. (2021) USA Mixed method - (Pre/post survey - open and closed questions) Type of intervention (Workshop) (General public) Death Communication Interventions Eneslätt et al (2020) Sweden Qualitative method - Interviews Type of intervention (Conversational card game) (Older population) Death Communication Interventions Huang et al. (2016) USA Mixed method - Surveys/interviews Type of intervention (Workshop) (African American individuals) Death Communication Interventions Miller-Lewis et al. (2020) UK, USA, New Zealand, and Canada) Quantitative method - Pre/post prospective design - questionnaire assessing death competence was completed before and after the course. Type of intervention (Online course) (General public) Death Communication Interventions Nedjat-Haiem et al. (2018) New Mexico Qualitative method - Semi-structured interviews. Type of intervention (Workshop) (Older Latinos with advance chronic diseases) Death Communication Interventions Rabow et al. (2019) USA Mixed method - 4 question survey and semi-structured interviews. Type of intervention (Workshop) (Individuals with cancer and their caregivers) Death Communication Interventions Radhakrishnan et al. (2019) USA Mixed method - Surveys/focus groups (pretest-posttest design) (Asian Indian American individuals) Death Communication Interventions 24 Type of intervention (Conversational card game) Tieman et al. (2018) Australia, United Kingdom, United States, New Zealand and Canada Quantitative method - Surveys/questionnaires. Type of intervention (Online course) (General public) Death Communication Interventions Van Scoy et al. (2017) USA Mixed method - Questionnaires/semi structured interviews. Three-stage follow-up (pre intervention questionnaire, post intervention and three months follow-up interviews) Type of intervention (Conversational card game) (General population) Death Communication Interventions Van Scoy et al. (2020) USA Mixed method - Questionnaires/semi structured interviews. Three-stage follow-up (pre intervention questionnaire, post intervention questionnaire and 3-to-11-month follow-up interview/questionnaire) Type of intervention (Conversational card game) (African American individuals) Death Communication Interventions 1.2 Theme One - Barriers to Death Communication The review revealed many barriers to death communication (See Table 2 for further details). Most research into barriers to death-related conversations has mainly focused on older populations or individuals with health conditions (Amjad et al., 2014; Bernard et al., 2020; Fried et al., 2017; Glaudemans et al., 2020; Im et al., 2019; Klemmt et al., 2020; Peterson et al., 2018; Stone et al., 2013), four studies explored the barriers to death communication among the general public 25 (Graham-Wisener et al., 2022; Islam et al., 2020; McIlfatrick et al., 2021; Wilson et al., 2022), one study explored the barriers among those recently bereaved (Jakoby, 2014) and one study explored the barriers among young adults (Reigada et al., 2021). The majority of research on barriers to death-related conversations among the general public was conducted in the UK; however, these studies focused on Wales (Islam et al., 2020) and Northern Ireland (Graham-Wisener et al., 2022; McIlfatrick et al., 2021). 1.2.1 Barriers to Death-related Conversations with Older Individuals In relation to research into the barriers to death communication among older individuals, seven key barriers were identified: a lack of knowledge of ACP issues (Bernard et al., 2020; Jeong et al., 2015; Stone et al., 2013), known others unwilling to engage in death-related conversations (De Souza et al., 2020; Peterson et al., 2018), fear of burdening or upsetting family members (Bernard et al., 2020; De Souza et al., 2020; Glaudemans et al., 2020; Klemmt et al., 2020; Peterson et al., 2018), assuming others are not open to such discussions (Fried et al., 2017; Stone et al., 2013), concerns around family dynamics (Bernard et al., 2020; Sanders et al., 2019), viewing ACP discussions as irrelevant (Bernard et al., 2020; Glaudemans et al., 2020; Im et al., 2019; Stone et al., 2013) and death being a taboo subject (Klemmt et al., 2020). For example, a cross-sectional mixed methods study by Bernard et al. (2020) found that 47.2% of participants had yet to discuss advance care planning with others. The study identified several barriers to engaging in ACP discussions: the emotive nature of the topic, concerns around family dynamics, not viewing ACP as a priority, a lack of knowledge about ACP, viewing ACP as irrelevant to their current life stage and believing that it is the responsibility of healthcare professionals to initiate such conversations (Bernard et al., 2020). For example, some participants stated that ACP was not a priority for them (i.e., participants were too busy with everyday life) or that they did not know enough about advance care planning, arguing that someone else would take care of it (i.e., trusting family members to know their end-of-life preferences). However, previous studies have found that family carers are often unaware of their loved ones end-of-life preferences or that elderly participants and their relatives held conflicting opinions about further treatment (Fleming et al., 2016; Klemmt et al., 2020), thus indicating the importance of communicating end-of-life preferences with loved ones. Moreover, some participants indicated they were too young or healthy to think about end-of-life planning (the mean age of participants was 66), with some participants reporting that ACP should only happen after a life-limiting diagnosis (Bernard et al., 2020). Participants also reported 26 uncertainty around the appropriate age to engage with ACP, with one eighty-year-old participant believing that she was too young to participate in advance care planning (Bernard et al., 2020). The following definition of ACP was presented to participants before the interview; "reflection, deliberation, and determination of a person's values and wishes or preferences for future treatments at the end-of-life" (Bernard et al., 2020). Therefore, this could have influenced participants' views of advance care planning as something that is only considered at the end of life. Individuals who believe that advance care planning is irrelevant to their current life stage may not recognise that ACP is necessary for informing their surrogate decision-maker to honour their wishes at a time when they may not be able to speak for themselves (this may not just be in the context of end-of-life care), therefore, informing individuals about this misconception could help ease the heightened emotions that individuals may feel when engaging in end-of-life discussions. Moreover, the study indicated that participants felt that the emotive nature of such conversations could affect family dynamics (particularly children and spouses) and possibly incite conflict, thus deterring individuals from engaging in death-related discussions (Bernard et al., 2020). For example, some participants reported not engaging in death-related discussions with family due to a lack of trust (i.e., participants did not trust family members to carry out their wishes) (Bernard et al., 2020). Furthermore, participants suggested that death communication has the potential to stir up strong emotions as the subject matter is 'sad' and 'depressing' (Bernard et al., 2020); therefore, participants would avoid death-related conversations due to the fear of causing emotional stress. Mirroring Bernard et al. (2020), a meta-ethnography on the perspectives of elderly Black and minority ethnic people and their adult children found that both elders and their children avoided death-related discussions as a form of protection (i.e., to protect relatives from topics perceived to be unpleasant) (De Souza et al., 2020). Protection was identified as a significant factor in preventing early death-related discussions. Elders wanted to protect their children from thinking about the death of their parents; however, this assumption was not unfounded, as adult children often closed down such discussions (De Souza et al., 2020). For example, Hispanic elders were open to end-of-life discussions with their children; however, they frequently stated that their children did not want to engage in such conversations (De Souza et al., 2020), thus indicating that further research is needed to explore how anxiety around end-of-life conversations can be eased, and openness reached. Moreover, De Souza et al. (2020) found that Cambodian, Hispanic and African American elders often use spiritual references when discussing how they deal with death and illness (De Souza et al., 2020). Some expressed a spiritual fatalistic view that life and death matters were beyond mortal control, so 27 there was no need to make formal decisions regarding the future, thus rendering conversations about end-of-life care preferences obsolete (De Souza et al., 2020). Additionally, Jeong et al. (2015) explored end-of-life planning among older people of culturally and linguistically diverse backgrounds. The study found that 40.3% of individuals reported difficulties in engaging with ACP for the following reasons: finding it difficult to talk to loved ones about ACP issues, problems in understanding what ACP is, not knowing whom to talk to, difficulties understanding the documents and not knowing how to complete ACP forms (Jeong et al., 2015). However, as this was a quantitative study, the reasons why people of culturally and linguistically diverse backgrounds found it challenging to talk to loved ones about end-of-life issues were not explored further. Furthermore, a comparison study exploring the experiences of engaging in end-of-life conversations found that those who had not engaged in death-related conversations were more susceptible to family resistance, less proactive, less likely to have encountered previous death-related experiences and viewed death-related conversations as abnormal for healthy adults when compared to those who had initiated death-related discussions with family members (Peterson et al., 2018). For example, the study revealed that individuals who had not engaged in end-of-life discussions had previously encountered family resistance to such conversations, thus preventing them from further engaging due to fears of upsetting or causing disagreement among family members (Peterson et al., 2018). Supporting De Souza et al. (2020), Peterson et al. (2018) found that a significant barrier to death communication was the unwillingness of others to engage in such conversations. For example, those who had talked about end-of-life care with family members stressed the difficulty of discussing end-of-life care with those who deflected the subject, with some participants suggesting that they needed to be "decisive" and "firm" when engaging in death-related conversations with family members (Peterson et al., 2018). In contrast to the other studies in this review, Peterson et al. (2018) found that participants who were unaware of the end-of-life preferences of family members were less motivated to consider and discuss their own preferences. This could indicate intergenerational aspects of advance care planning, thus emphasising the benefits of discussion role modelling and the need for further research into how individuals can be encouraged to engage in such discussions. Two studies indicated that social isolation is a significant barrier to engaging in death-related discussions for older individuals (Boerner et al., 2021; de Vries et al., 2019). For example, a study by Boerner et al. (2021) found that socially isolated individuals (those with smaller social networks and 28 fewer social activities) were more likely to engage in formal planning only (formal planning without discussions), unlike two-pronged advance care planning (formal planning with discussions) which is widely considered more effective. Supporting Boerner et al. (2021), a Canadian qualitative study by de Vries et al. (2019) utilised focus groups and interviews to explore end-of-life preparations among ninety-three older LBGT individuals. The study found that participants commonly stated that they had no one to look after them at the end of life; and therefore, nobody to engage in such conversations with (de Vries et al., 2019). Families were often mentioned regarding their emotional distance and estrangement, limiting end-of-life conversations (de Vries et al., 2019). For LGBT persons, their support network often came from their chosen families (de Vries et al., 2019); however, the study showed that both lesbian and bisexual women and gay and bisexual men avoided death-related conversations due to not wanting to “put friends out” or burden them when they have their own lives to live (de Vries et al., 2019). The study shows that death-related discussions are often absent in the end-of-life preparations of LGBT people, even when formal planning has been prepared (de Vries et al., 2019), thus indicating that isolation and loneliness are key barriers to engaging in death-related conversations. In contrast, a mixed methods study examining the barriers and facilitators to advance care planning for sexual and gender minority (SGM) people found that while few SGM individuals had engaged in formal advance care planning, many had engaged in death-related conversations around end-of-life care with loved ones (Reich et al., 2022). The findings indicated that 73% of those who had not engaged in end-of-life discussions denied the need for such discussions; however, during interviews, when questioned about this, participants discussed concerns about whether their preferences would be honoured (Reich et al., 2022). Five studies explored the barriers to death-related conversations between elderly individuals and their relatives (Fleming et al., 2016; Fried et al., 2017; Glaudemans et al., 2020; Klemmt et al., 2020; Stone et al., 2013). For example, a qualitative study of thirty-two participants (twenty-four nursing home residents and eight relatives) indicated that relatives were the preferred conversation partners of elderly persons regarding end-of-life care conversations (Klemmt et al., 2020). Although most family members stated that they were aware of their elderly relatives' wishes, needs, ideas and attitudes towards end-of-life care, ideas and attitudes were not always congruent between elderly participants and their relatives (Klemmt et al., 2020). For example, elderly participants and their relatives held conflicting opinions about further treatment (Klemmt et al., 2020), thus indicating the importance of pre-emptive death-related conversations in enabling individuals to receive the kind of 29 care they wish for at the end of life. Furthermore, the study indicated that although most elderly residents were prepared to discuss ACP, issues around timing, viewing death as taboo and fears around engaging in such conversations hindered death communication. Similar to the findings of De Souza et al. (2020), Klemmt et al. (2020) found that some elderly participants also cited faith as a decision-making orientation. Fleming et al. (2016) found that although older individuals (those aged 95-101) are willing to engage in death-related conversations, they rarely do. The study indicated that relatives found it difficult to initiate discussions around end-of-life preferences with their elderly relatives; however, they felt confident in predicting their relatives preferences (Fleming et al., 2016). This finding mirrors the study by De Souza et al. (2020), which showed that parents trusted their children to care for them and act as decision-makers at the end of life without engaging in such discussions. Opposing views between the elderly participants and their family members were rare; however, like Klemmt et al. (2020), there were some exceptions (both discrepancies were around resuscitation/life-saving treatment), thus indicating the importance of pre-emptive discussions around end-of-life care preferences (Fleming et al., 2016). Furthermore, like De Souza et al. (2020) and Klemmt et al. (2020), the study indicated that some older adults felt as though end-of-life planning was unnecessary as their faith provided a framework for end-of-life care preferences (i.e., leaving death to God's will), thus indicating that patient autonomy may be viewed as inconsistent with the spiritual value of trusting in God's plan (Fleming et al., 2016). Furthermore, a qualitative study by Glaudemans et al. (2020) explored older individuals and their relatives' experiences with advance care planning in primary care. Interviews were conducted with older participants (with whom healthcare professionals had practised ACP in the last three months) and their relatives. When family members were present during ACP, the older individual and their families valued it (Glaudemans et al., 2020). Moreover, the study found that participants were more likely to remember topics discussed in their ACP conversations with healthcare professionals if family members were present (Glaudemans et al., 2020). When family members were absent, older individuals held differing views on whether they wished for family members to be present during ACP. For example, some older individuals felt as though they could speak more freely without the presence of family members or that being present during ACP might burden relatives (Glaudemans et al., 2020). When relatives were not present during ACP, some older individuals afterwards discussed their end-of-life preferences with family members; however, like De Souza et al. (2020), some did not due to the belief that family members would know their preferences without explicitly discussing them (Glaudemans et al., 2020). 30 In addition, Glaudemans et al. (2020) found that participants were less inclined to engage in ACP behaviours if they felt that the end of life was too unpredictable to plan. Like Bernard et al. (2020), Glaudemans et al. (2020) found that older participants who held positive views about their current and future situations were less open to engaging in advance care planning. Similarly, a qualitative study by Stone et al. (2013) explored the experiences of engaging in ACP within a nursing home context. Following an ACP discussion, semi-structured interviews were conducted with the nursing home residents and their family members (within one week of the initial ACP discussion). The study found that a significant barrier to ACP discussions was a need for more understanding about advance care planning (Stone et al., 2013). For example, like participants in the study by Bernard et al. (2020), one participant associated advance care planning with end-of-life care, believing it only to be relevant when someone was about to die (Stone et al., 2013). However, most relatives had a better understanding of the purpose of ACP (i.e., helping to acknowledge wishes and looking at future care). The study found that decisions around when to initiate ACP discussions varied. For example, some family members suggested that ACP discussions held too close to admission might be overwhelming. In contrast, other family members were relieved to engage in such conversations on their elderly relatives' first day of admission. Moreover, interviews revealed that relatives' assumptions about their elderly parent's openness to engage in ACP conversations were often unfounded (Stone et al., 2013). For example, a staff member explained how the son of an elderly resident was reluctant to engage in ACP conversations with his mother as he felt it might frighten her; however, after the staff member had spoken to the elderly relative, they found that she was very comfortable engaging in death-related discussions (Stone et al., 2013). Moreover, the study indicated that although staff were apprehensive about engaging in ACP discussions in case of upsetting residents, most residents were open to such conversations. Supporting this, a qualitative cross-sectional study by Fried et al. (2017) found that a significant barrier to end-of-life conversations is the assumption that others are not open to such conversations. Fried et al. (2017) explored the perspectives of primary care patients and their surrogate decision-makers in engaging in advance care planning. The study found that both patients and surrogates made assumptions about barriers held by one another that were misconceived. For example, both patients and surrogates reported fears about the other not being ready for such conversations; however, as the study utilised paired interviews, it was highlighted that these fears were often unfounded. 31 Moreover, Fried et al. (2017) found that patients and surrogates sometimes forgot about participating in procedural and communication ACP activities. Disagreements about whether advance care planning discussions had occurred stemmed from how such conversations were interpreted by one another. For example, when patients described discussions they believed had occurred but surrogates had not, surrogates frequently suggested that the discussion lacked sufficient detail concerning the patient's preferences (Fried et al., 2017). However, one dyad indicated that the surrogate had not heard what the patient discussed because he was not ready to engage in end-of-life discussions. Contrastingly, when surrogates described discussions they believed had occurred, but patients had not, surrogates admitted that the discussions were general but, like De Souza et al. (2020) and Fleming et al. (2016), surrogates indicated that they knew the patient well enough to predict their preferences; this was the case in several interviews. In addition, like Klemmt et al. (2020) and Fleming et al. (2016), one dyad was surprised to find out that the patient's preferences were not what the surrogate had thought (Fried et al., 2017). This points to the importance of pre-emptive death-related conversations in order to ensure that end-of-life preferences are known and honoured. This finding is supported by a qualitative study utilising interviews and focus groups by Sanders et al. (2019), which explored the perception of barriers and facilitators to advance care planning among health discrepancy experts, community-dwelling African Americans and seriously ill African Americans. All participants highlighted the importance of family in engaging with advance care planning. Experts stressed the significance of family decision-making and how this challenges advance care planning. In contrast, patient-caregiver and community participants highlighted the importance of autonomous decision-making to reduce burden and protect themselves from family conflict regarding end-of-life care. Moreover, like De Souza et al. (2020), Klemmt et al. (2020) and Fleming et al. (2016), Sanders et al. (2019) also found that spirituality and religion influenced ACP behaviours. For example, the study found that religion and spirituality often helped participants make sense of illness and its trajectory and, therefore, influenced advance care planning behaviours (Sanders et al., 2019). Experts indicated that religion and spirituality hindered ACP behaviours in African American individuals due to the belief that death and illness are under God’s control, thus fostering a sense of fatalism that prevents advance care planning (Sanders et al., 2019). Although patient-caregiver participants agreed with this belief, unlike the expert group (who framed spirituality and religion as a potential barrier to engaging in ACP), patient-caregiver participants focused on the positive aspects of spirituality and religion in providing strength and support; this was also accompanied by an acceptance of death (Sanders et al., 2019). 32 1.2.2 Barriers to Death-related Conversations in Populations with Life limiting-Conditions Three studies explored the barriers to death communication, specifically among individuals with life-limiting conditions (Bachner et al., 2014; Carmel et al., 2020; Im et al., 2019). For example, a qualitative study by Im et al. (2019) explored the views of patients and caregivers' understanding of heart failure and how this influenced end-of-life discussions. The study found that although patients gained detailed knowledge of heart failure management via illness‐related experiences, participants did not recognise the seriousness of their illness (Im et al., 2019). Although patients and caregivers were aware of the increasing vulnerabilities and fluctuations in the health of their family members, participants normalised these experiences and did not view them as a decline towards the end of life; as a result, participants had not engaged in end-of-life discussions with loved ones or healthcare providers (Im et al., 2019). Participants wanted to focus on maintaining their current health; therefore, many patients and caregivers wanted to wait until further decline before initiating end-of-life conversations (Im et al., 2019). This suggests that older adults with heart failure and their caregivers may view symptoms and deteriorations of heart failure as temporary and, therefore, do not see the need for end-of-life conversations (Im et al., 2019); however, such misconceptions can delay essential end-of-life discussions. This indicates that the uncertainty of illness and an individual's awareness of dying can delay such conversations; therefore, exploring how individuals become open to such discussions could suggest ways for healthcare professionals to be more direct with patients and their families about end-of-life care and wishes. Similarly, two studies explored openness to death communication between spousal caregivers and their terminally ill partners (Carmel et al., 2020; Bachner et al., 2014). For example, an Israeli descriptive correlational study of seventy-seven Ashkenazi and Sephardi individuals found that low self-efficacy, duration of caregiving and cultural norms and differences affected openness to death communication (Bachner et al., 2014). For example, Ashkenazi individuals were more open to death communication than those of Sephardi origin, thus indicating that cultural norms and differences can affect levels of open communication to death and dying (Bachner et al., 2014). Individuals of Sephardi origin have clear hierarchical family structures and gender roles; therefore, the spouse is not viewed as the closest person from an emotional perspective. In contrast, Ashkenazi individuals have informal relationships with their spouses; instead, spouses are considered the closest family members in all aspects of life (Bachner et al., 2014). Therefore, Sephardi individuals face more barriers to open death-related communication as they are more likely to turn to other members of their families. Whereas Ashkenazi individuals, whose spousal relationships are less formal, will engage in open death communication, including sharing concerns, fears and feelings regarding death 33 and dying (Bachner et al., 2014). This could indicate that cultural norms can affect levels of open communication between individuals within these relational contexts. Furthermore, a quantitative study, using the data gathered for the study by Bachner et al. (2014), explored the gender differences in openness to death communication between spousal caregivers and their terminally ill partners (Carmel et al., 2020). The study found that although open death communication among spousal caregivers and their terminally ill partners was uncommon, female spousal caregivers were more open than male spousal caregivers. Like Bachner et al. (2014), the study indicated that self-efficacy was a significant factor in open communication for men and women (i.e., caregivers with higher self-efficacy felt stronger about their ability to engage in such conversations with their terminally ill spouses). Moreover, the most significant factor of open communication for males was the duration of caregiving (i.e., the longer the duration of care, the less likely male caregivers would describe engaging in open death-related conversations with their ill spouses). 1.2.3 Barriers to Death Communication across the Lifespan One study explored community perspectives on end-of-life preparedness across the lifespan (Banner et al., 2019). For example, Banner et al. (2019) used focus groups to explore community perspectives of end-of-life preparedness between students, parents of young children, adults with older parents and adults over fifty years. The study identified several barriers to end-of-life preparedness across the life span, such as a lack of knowledge of end-of-life issues, a lack of accessible resources, difficulties finding the right time to engage in such conversations and the challenging nature of death-related conversations (Banner et al., 2019). For young adults and parents of young children, death-related discussions mainly occurred with friends (Banner et al., 2019). Parents of young adults indicated that it was challenging to initiate discussions around end-of-life with close family members (Banner et al., 2019). For example, one participant spoke of her struggle to engage in death-related conversations with her partner due to his perception that such conversations are irrelevant to their current life stage. Participants with ageing parents reported mixed experiences of engaging in death-related conversations with loved ones (Banner et al., 2019). However, across all groups, participants expressed difficulties in engaging in such conversations. Participants indicated that death-related conversations were seen as "sensitive" and "morbid"; therefore, it was difficult to initiate and engage in meaningful discussions around end-of-life planning with loved ones (Banner et al., 2019). Moreover, like Peterson et al. (2018), some participants reported that discussions were forced or engineered as family members were unwilling to discuss such matters (Banner et al., 2019). 34 Furthermore, a key factor when thinking about initiating end-of-life discussions was timing (Banner et al., 2019). The study revealed that individuals may delay death-related discussions due to not currently being faced with a situation needing immediate planning. Participants frequently stated that when death feels more like a reality, people may be more motivated to engage in such discussions (Banner et al., 2019); however, waiting until the imminent need arises may make it more challenging for families to engage in such discussion, thus contributing to further barriers. Moreover, only a small minority of participants had engaged in positive death-related conversations with family members; however, very few reported that they had little interest in discussing end-of-life issues (Banner et al., 2019), thus indicating a public desire to facilitate such conversations with close others. 1.2.4 Barriers to Death-related Conversations with the General Public (UK) Only in the last two years has there been an increasing amount of interest in research focusing on facilitating death-related conversations within the UK general public (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Wilson et al., 2022). Four key barriers were identified in relation to barriers to death communication among the general public; perceiving death as taboo (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021), the reluctance of know others to engage in such conversations (Graham-Wisener et al., 2022; Wilson et al., 2022), fear of upsetting others (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021) and superstitious beliefs around engaging in such conversations (McIlfatrick et al., 2021; Wilson et al., 2022). For example, a Northern Irish study of 381 participants conducted by Graham-Wisener et al. (2022) explored the barriers and facilitators to death-related conversations among the general public. The study found four key barriers to engaging in death-related conversations: the challenges of navigating such conversations, the emotional response of themselves and others when engaging in death-related conversations, the societal belief that death is taboo and the belief that others are unwilling to engage in such conversations (Graham-Wisener et al., 2022). Fear and emotions involving fear, such as the fear of upsetting others, were frequently referred to by participants across most subthemes. Similarly, another Northern Irish mixed methods study by McIlfatrick et al. (2021) explored the barriers to ACP conversations among the general population. The study found that only 28.5% of participants had heard of advance care planning and only 7% had engaged in conversations relating to advance care planning (McIlfatrick et al., 2021). Like the study by Bernard et al. (2020), McIlfatrick et al. (2021) found that participants held misconceptions about advance care planning, suggesting 35 that ACP only focuses on treatments and medical care, with some participants viewing ACP as a “last resort” after all other medical treatment had failed (McIlfatrick et al., 2021). Similarly, superstitious beliefs about engaging in death-related conversations (i.e., the perception that talking about death might hasten it) hindered engagement in such conversations (McIlfatrick et al., 2021). In addition, 63.3% of participants reported that because they were healthy, they did not want to think about advance care planning, thus mirroring previous research indicating that a significant barrier to end-of-life conversations is the perception that advance care planning is only relevant for those that are elderly or close to the end of life (McIlfatrick et al., 2021). Like the study by Graham-Wisener et al. (2022), McIlfatrick et al. (2021) found that the societal belief that death is taboo hindered engagement in ACP discussions (McIlfatrick et al., 2021). For example, the study found that participants were reluctant to engage in advance care planning as it is associated with death and dying, which is considered ‘taboo’ and, therefore, should not be discussed (McIlfatrick et al., 2021). Moreover, mirroring previous research, fears around upsetting loved ones were considered a key barrier to engaging in death communication (McIlfatrick et al., 2021). For example, most participants suggested that they would find it challenging to engage in conversations about their mortality due to the fear of causing distress or upset, with some participants reporting that others may view initiating such conversations as an indication of an impending problem (McIlfatrick et al., 2021). In addition, Islam et al. (2021) conducted a mixed methods study on 2,210 Welsh participants. Although most participants indicated that they were open to death-related conversations, 72% of participants felt as though others did not talk enough about death and dying (Islam et al., 2021). Three barriers to engaging in death communication were identified: social perception and practice, a lack of opportunities and support, and personal emotions and values. Mirroring the studies by Graham-Wisener et al. (2022) and McIlfatrick et al. (2021), participants in the study by Islam et al. (2021) suggested that death is considered taboo; therefore, engaging in such discussions is ‘morbid’, ‘impolite’ and not socially acceptable. Additionally, participants reported difficulties in finding the right time to engage in such conversations, or they did not have loved ones to engage in such conversations with. Moreover, the study indicated that personal fear of death and concerns over causing distress were significant barriers to initiating death-related conversations with others (Islam et al., 2021). Similarly, Wilson et al. (2022) conducted deliberate discussion groups with 41 participants as part of a broader study on the perspectives of bereaved individuals and patients at the end of life. The study found that participants were more open to discussing death abstractly rather than discussing the 36 topic with someone who was imminently facing death (Wilson et al., 2022). Participants indicated that engaging in death-related discussions was a personal choice and, therefore, ‘blanket approaches’ which may pressure some individuals to engage in such discussions are not appropriate (Wilson et al., 2022). Like McIlfatrick et al. (2021), participants also stated that superstitions around death and the reluctance of others to engage in such conversations were seen as significant barriers to death communication (Wilson et al., 2022). However, unlike previous research into the barriers to death communication within the UK, Wilson et al. (2022) found that the unpredictability of death prevented engagement in death-related conversations around end-of-life care, other than discussions around pain relief. Mirroring previous research into the barriers to death communication in older populations (Bernard et al., 2020; De Souza et al., 2020; Fleming et al., 2016), some participants indicated that they did not need to discuss their end-of-life issues, as family members were trusted to make those decisions for them; however, the consequences of not engaging in discussions around end-of-life care were also highlighted. For example, some participants spoke of the consequences of not engaging in pre-emptive death-related discussions with close others which led to guilt around whether those wishes had been fulfilled, thus highlighting the importance of such conversations. However, in contrast to previous research (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021), Wilson et al. (2022) found that the death taboo did not resonate with participants, with some participants suggesting that others may feel pleased to engage in such conversations. Unlike the above-mentioned UK studies, with the exception of McIlfatrick et al. (2021), Wilson et al. (2022) used focus groups to gather data which may have deterred participants from openly talking about their beliefs around the death taboo. The UK studies cited above utilised focused groups (Wilson et al., 2022), open-ended questions (Graham-Wisener et al., 2022) and mixed-method surveys (McIlfatrick et al., 2021; Islam et al., 2021) to elicit responses from participants about the barriers and facilitators to end-of-life conversations; however, such methods have limitations. For example, Graham-Wisener et al. (2022) only used two open-ended questions in their study on barriers and facilitators to end-of-life conversations within the UK; therefore, richer qualitative data gathered via interviews would have resulted in a more in-depth exploration of how openness towards death can be encouraged. Wilson et al. (2022) utilised focus groups to explore people’s perceptions of death-related conversations within the UK. Although focus groups help explore the thoughts, feelings and opinions of large groups, focus groups may prevent individuals from openly talking about their opinions (especially when the topic is difficult or sensitive). Similarly, Islam et al. (2021) used a mixed-method survey design to explore public attitudes towards death in Wales; such methods prevent the researcher from eliciting detailed 37 responses from participants about their experiences; therefore, a grounded theory methodology could extend previous research by providing a more in-depth description of how individuals become open to thinking and talking about death and dying. Furthermore, McIlfatrick et al. (2021) utilised a cross-sectional survey and focus groups with members of the public; however, the study focused on public attitudes towards end-of-life planning rather than exploring how individuals become open to death communication more broadly. 1.2.5 Barriers to Death-related Conversations among young adults In addition, one study explored the perceptions of death-related issues specifically among young people (Reigada et al., 2021). For example, a Spanish study by Reigada et al. (2021) used focus groups to explore the perceptions of palliative care among those aged 18-22. The study revealed that students had an ambiguous understanding about palliative care, mirroring previous research (Bernard et al., 2020; McIlfatrick et al., 2021), students often understood palliative care as synonymous with death; however, participating in the first focus group prompted positive conversation, curiosity and further reflection (Reigada et al., 2021). Participants stated that they do not engage in death-related discussions in their everyday lives as it is a challenging, taboo topic that requires a certain level of maturity; therefore, they tend to ignore the subject (Reigada et al., 2021). Mirroring previous research, participants indicated that a significant barrier to death communication was viewing death-related discussions as irrelevant to their current life stage. Participants argued that death does not fit with their youth and frequently indicated that they cannot discuss death at university or among their peers (Reigada et al., 2021). Due to the lack of relevance of the topic in relation to their current life stage, combined with a lack of public debate around death-related issues, participants argued that death is not something that they actively think about or openly discuss. Supporting this, the study by Banner et al. (2019) that explored community perspectives of end-of-life preparedness between students, parents of young children, adults with older parents and adults over fifty years found that young adults reported being most at risk of sudden death; therefore, they did not think about end-of-life care. Exploring how individuals become open to death regardless of health and age could indicate ways to encourage younger individuals to engage in death-related conversations. Enabling young adults to actively think about and engage in death-related conversations could prompt their parents and grandparents to follow suit by offering them an entry point to explore the subject of death more generally. 38 1.2.6 Barriers to Death-related Conversations with those recently bereaved The review revealed only one study that explored the barriers to death-related conversations for bereaved individuals (Jakoby, 2014). The German quantitative survey of 338 bereaved individuals revealed several challenges in the communication process between bereaved individuals and their preferred conversational partners. For example, the findings reported that 37.3% of participants reported not being able to talk to everyone to whom they wished to talk to (12.7% wanted to talk to family, 9.5% wanted to talk to their partner, 8.9% wanted to talk to friends and 5.6% wanted to talk to the family of the deceased) (Jakoby, 2014). Participants stated several reasons for avoiding death-related discussions with those they wished to talk to. For example, 42.9% did not want to burden or stress others, 21.0% did not want to talk about their feelings, 18.5% thought that talking about their feelings was inappropriate, 32.8% stated that others did not ask about their grief and 28.4% stated that those they wanted to talk to were unavailable (Jakoby, 2014). The data indicated that concerns around being a burden were key obstacles to death communication in bereaved individuals (Jakoby, 2014). This could relate to other barriers, such as not wanting to cause discomfort, making others feel uncomfortable or fears around causing emotional responses as reported in previous research in relation to older populations (Bernard et al., 2020; De Souza et al., 2020; Glaudemans et al., 2020; Klemmt et al., 2020; Peterson et al., 2018) and barriers to engaging in such conversations among the general public (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Wilson et al., 2022). Moreover, the study also found that some participants did not want to engage in death-related discussions due to the emotional reactions of friends and the expectancy placed on bereaved individuals to ‘function’. This suggests that bereavement is still a problematic issue within society, and barriers exist to engaging in conversations around grief with family and friends. Therefore, exploring how individuals become open to death-related conversations could suggest ways to address the barriers to talking openly about grief with others. Similarly, exploring the process behind openness towards death could help to encourage bereaved individuals to talk openly about the anxiety of upsetting others, as only open conversation and an explicit invite to engage in such conversations can ease this fear. 1.2.7 Overview As cited above, research has mainly focused on the barriers to death-related conversations (See Table 2 for further details). Although it is important to explore these barriers, it is equally important to explore how individuals become open to these types of conversations in the first place. Exploring how individuals become open to death communication could suggest ways in which the identified 39 barriers could be overcome. In addition, exploring the process behind openness to death communication could inform how openness is reached before the abovementioned barriers arise. Although there is a surplus of research exploring the barriers to death communication, very little research has explored the barriers to death communication within the general public (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Wilson et al., 2022). Moreover, previous research has mainly focused on barriers to engaging in ACP behaviours (Banner et al. (2019; Betker et al., 2021; Bernard et al., 2020; Boerner et al., 2021; Fleming et al., 2016; Fried et al., 2017; Glaudemans et al., 2020; Jeong et al., 2015; Klemmt et al., 2020; McIlfatrick et al., 2021; Peterson et al., 2018; Reich et al., 2022; Sanders et al., 2019; Stone et al., 2013; de Vries et al., 2019) rather than looking at death-related conversations more broadly. Such knowledge would be valuable in supporting individuals to become open to not just ACP conversations but death-related conversations more generally. A significant barrier to end-of-life discussions was the belief that family members know their relatives' preferences without explicitly discussing them (De Souza et al., 2020; Fried et al., 2017; Glaudemans et al., 2020). Similarly, another significant barrier was the assumption that others are unwilling to engage in death-related conversations (De Souza et al., 2020; Peterson et al., 2018). Exploring how individuals become open to death communication would suggest ways in which to promote more openness, thus reducing the above-mentioned barriers. Most studies have explored ACP discussions within specific populations, such as older individuals or those with life-limiting conditions (See Table 2 for further details). Few studies have explored community perspectives on engaging in death-related discussions; therefore, this study responds to this gap by exploring how openness to death communication is reached within the general public. Although previous studies indicate several barriers to death communication, the studies cited above often grouped barriers to death communication with barriers to ACP. Barriers to death communication were not assessed independently of barriers to engaging in advance care planning; therefore, this needs to be explored separately. Moreover, understanding how individuals become open to death communication via identifying the processes that individuals may go through could help promote ACP behaviours as well as address the barriers associated with ACP discussions. Moreover, the findings suggest that fears and anxieties associated with death communication hinder engagement in such conversations. Fear is recognised as a prominent barrier to engaging in death-related conversations; therefore, strategies to reduce fear must be further explored. Exploring the 40 process behind how individuals become open to death communication could help to identify ways in which this barrier could be overcome. 1.3 Theme Two - Facilitators for Death Communication The review indicated various facilitators for death communication (See Table 2 for further details). The findings fall into two categories; facilitators experienced by participants (Amjad et al., 2014; Banner et al., 2019; Fleming et al., 2016; Fried et al., 2017; Glaudemans et al., 2020; Klemmt et al., 2020; McIlfatrick et al., 2021; Peterson et al., 2018; Reigada et al., 2021; Sanders et al., 2019; Stone et al., 2013) and facilitators suggested by participants (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Reigada et al., 2021; Wilson et al., 2022; de Vries et al., 2019). 1.3.1 Facilitators Experienced by Participants In relation to facilitators experienced by participants, recognising the benefits of death-related conversations (Banner et al., 2019; Fried et al., 2017; Glaudemans et al., 2020; Klemmt et al., 2020; Peterson et al., 2018; Sanders et al., 2019) and prior death-related experience (Amjad et al., 2014; Banner et al., 2019; Fleming et al., 2016; Fried et al., 2017; Glaudemans et al., 2020; McIlfatrick et al., 2021; Peterson et al., 2018; Reigada et al., 2021; Sanders et al., 2019; Stone et al., 2013; Wilson et al., 2022) were the most frequently mentioned facilitators for death communication. The majority of studies indicated that prior death-related experiences prompted individuals to recognise the benefits of end-of-life conversations, thus prompting individuals to engage in such discussions (Amjad et al., 2014; Banner et al., 2019; Fried et al., 2017; Glaudemans et al., 2020; Peterson et al., 2018; Sanders et al., 2019). Another facilitator included participation in academic research (Fried et al., 2017). Several studies reported that recognising the benefits of death-related conversations encouraged more openness to death communication (Banner et al., 2019; Fried et al., 2017; Glaudemans et al., 2020; Klemmt et al., 2020; Peterson et al., 2018; Sanders et al., 2019). These benefits included ensuring that end-of-life wishes are followed (Amjad et al., 2014; Banner et al., 2019; Fried et al., 2017; Glaudemans et al., 2020; Peterson et al., 2018), avoiding unwanted medical treatment (Banner et al., 2019; Fried et al., 2017; Glaudemans et al., 2020) reducing burden on surviving family members (i.e., honouring the wishes and protecting loved ones from decision-making) (Banner et al., 2019; Glaudemans et al., 2020; Fried et al., 2017; Klemmt et al., 2020; Peterson et al., 2018; Sanders et al., 2019; Wilson et al., 2022), protecting themselves from unwanted family decisions (Sanders et al., 2019) and avoiding family conflict (Sanders et al., 2019). The review found that individuals who acknowledged end-of-life conversations as a time of decision-making were more likely to engage in such discussions (Fried et al., 2017; Glaudemans et al., 2020; 41 Klemmt et al., 2020; Peterson et al., 2018; Sanders et al., 2019). For example, Peterson et al. (2018) found that those who engaged in end-of-life care discussions discussed planning as an obligation (i.e., it was their responsibility to plan for the end of life). These participants recognised the benefits of ACP and were aware of the risks of insufficient planning. Almost all participants who had engaged in discussions around end-of-life care had completed written advance directives (ADs), thus indicating that promoting discussions around end-of-life care could encourage readiness to engage with ACP. Those who acknowledged end-of-life as a time of decision-making and wanted their voices heard were more likely to engage in death-related discussions when compared to those who had not thought about end-of-life decision-making. Supporting this, the qualitative study by Glaudemans et al. (2020) found that older participants were more open to advance care planning if they wanted to avoid undesirable future scenarios (i.e., preventing suffering and burdening surviving family members with making choices for them). Mirroring this, Klemmt et al. (2020) found that recognising the benefits of ACP documentation in reducing the burden of decision-making on family members and clarifying responsibilities prompted participants to draft relevant documents. Furthermore, the study by Sanders et al. (2019) found that patient-caregiver and community participants indicated that control and preparation were motivators for engaging in advance care planning. These participants valued end-of-life preparation and related ACP with helping to facilitate a peaceful death. Contrastingly, the study by McIlfatrick et al. (2021) found that although 78.7% of participants indicated that conversations around advance care planning are beneficial, two-thirds suggested that they did not want to find out more information or think about it at this time, thus indicating that recognising the benefits of death-related discussions does not always equate to readiness to engage in ACP behaviours. Mirroring this, Banner et al. (2019) found that participants wanted to engage in end-of-life preparedness in order to relieve the burden on surviving family members and facilitate a positive grief experience; however, the study indicated that although participants recognised the benefits of end-of-life preparedness, few had engaged in formal planning behaviours except for informal discussions with family members. Although previous studies indicate that recognising the benefits of death communication can lead to more openness around engaging in death-related discussions, the studies cited above often grouped death communication with other ACP behaviours to explore people's readiness to engage in ACP activities. Therefore, facilitators to death communication were not assessed independently of general readiness to participate in ACP behaviours such as engaging in formal ACP documentation. As a result, future research needs to explore the facilitators for death communication objectively. 42 In addition, prior death-related experiences were the most commonly cited facilitator for engaging in death-related conversations (Amjad et al., 2014; Banner et al., 2019; Fleming et al., 2016; Fried et al., 2017; Glaudemans et al., 2020; McIlfatrick et al., 2021; Peterson et al., 2018; Reigada et al., 2021; Sanders et al., 2019; Stone et al., 2013). For example, Glaudemans et al. (2020) found that participants were more inclined to engage in advance care planning if they had encountered a negative death-related experience (i.e., one participant was prompted to engage in ACP after the death of her husband as she did not want to suffer like he did). Supporting this, Peterson et al. (2018) found that individuals who had discussed end-of-life care with family members expressed knowledge of advance care planning gained via end-of-life care experiences with others (mostly their elderly parents); however, participants who had not discussed end-of-life care with family members did not comment on gaining knowledge through end-of-life care experiences (Peterson et al., 2018). The most common end-of-life experience that prompted participants to engage in death-related conversations was not knowing the end-of-life wishes of others (Peterson et al., 2018). However, one participant was prompted to discuss her end-of-life preferences after her experiences at work (healthcare worker). Moreover, a quantitative study of forty-six participants by Amjad et al. (2014), explored the influence of end-of-life care and illness experiences on people’s readiness to engage in advance care planning. The study found that personal experience with life-threatening illness was not associated with greater willingness to engage in advance care planning behaviours (except for conversations relating to life-sustaining treatment with family members); however, end-of-life care experiences were associated with greater readiness to take part in advance care planning behaviours (Amjad et al., 2014). Mirroring Peterson et al. (2018), Amjad et al. (2014) found that participants who had experienced at least one end-of-life care experience, including decision-making for others, demonstrated a greater willingness to complete a living will/healthcare proxy and discuss life-sustaining treatment with family members, thus indicating that end-of-life experiences with others rather than experiences with illness are more likely to encourage readiness to engage in advance care planning behaviours (Amjad et al., 2014). However, as the study used quantitative methods, more in-depth qualitative data would have been beneficial to explore how specific end-of-life care experiences were associated with greater readiness to engage in ACP behaviours. In contrast to previous studies that suggest that death-related experiences promote ACP behaviours to limit and avoid unwanted medical treatment (Banner et al., 2019; Fried et al., 2017; Glaudemans et al., 2020;), Amjad et al. (2014) found that participants were more motivated to engage in ACP behaviours after witnessing someone who had received too little medical treatment. This could 43 suggest that direct and indirect exposure to end-of-life care (i.e., through personal experience or the media) could encourage more openness to thinking and talking about death and dying. Furthermore, Banner et al. (2019) found several situations which prompted participants to think about end-of-life preparedness, such as the death of a loved one, the birth of a child or the decline in the health of an elderly relative. However, there were differences in the situations experienced by participants and what participants wanted to prepare for. For example, after the birth of a child, parents were prompted to discuss their end-of-life wishes, sort out financial affairs and create a will. Contrastingly, participants with elderly parents were prompted to explore end-of-life planning for both them and their parents. The most likely experience to prompt ACP was a decline in the health of their parents. Some participants reported that sharing death-related experiences where no end-of-life planning took place could prompt individuals to recognise the importance of such conversations, thus encouraging individuals to engage in pre-emptive death-related conversations. Participants were triggered to think about end-of-life planning after a significant life event; therefore, these transition phases could be used to deliver community interventions to improve end-of-life preparedness, thus improving the uptake of planning activities. Previous research indicated that prior death-related experiences were facilitators of death communication across the lifespan. For example, the qualitative study by Fleming et al. (2016) revealed that participants (aged 95-101) suggested that “being surrounded by death” presented opportunities to initiate such conversations. Similarly, the Spanish study by Reigada et al. (2021) revealed that young adults stated that it is their previous death-related experiences or prior contact with palliative care situations that enable them to engage in death-related discussions. 1.3.2 Facilitators Suggested by Participants Previous research indicated various facilitators to death communication suggested by participants (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Reigada et al., 2021; Wilson et al., 2022; de Vries et al., 2019) such as death education in schools and universities (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Reigada et al., 2021), discussing death-related issues more broadly in the media (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Reigada et al., 2021), forums to support and encourage death-related discussions (de Vries et al., 2019), normalising death-related discussions (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Peterson et al., 2018; Wilson et al. (2022), involving young people and children in death-related conversations (Graham-Wisener et al., 2022; Peterson et al., 2018; Wilson et al., 2022) and increasing knowledge about death-related issues (Graham-Wisener et al., 2022; McIlfatrick et al., 2021). 44 For example, Graham-Wisener et al. (2022) indicated many facilitators for engaging in death-related conversations. For instance, some participants stated that increasing knowledge about the death system (i.e., improving knowledge via providing opportunities to do so) would encourage more openness to death conversations, with participants suggesting that this could be achieved through death education in schools, improving the availability of informational resources on end-of-life care options and experts sharing their expertise (Graham-Wisener et al., 2022). Another facilitator involved improving interpersonal communication via providing practical support to improve communication skills (i.e., providing communication skills training), increasing awareness of individual differences around death communication (cultural and religious beliefs) and acknowledging that initiating early death-related discussions is our responsibility (Graham-Wisener et al., 2022). Moreover, the study found that encouraging the acceptance of death-related conversations was required in order to encourage openness to death communication (Graham-Wisener et al., 2022). Participants suggested death-related conversations could be normalised by encouraging individuals to recognise the benefits of death-related conversations, reducing fears around engaging in death-related conversations (i.e., by helping individuals to disassociate from superstitious fears such as the misconception that talking about death may hasten it) and promoting death as a normal part of life (Graham-Wisener et al., 2022). Participants reported several services, approaches and stakeholders that had the potential to encourage greater death communication, such as healthcare providers, researchers, schools, the media, policymakers and the arts, thus stating that encouraging death communication needs to involve utilising a variety of resources and services (Graham-Wisener et al., 2022). The study into public attitudes towards ACP by McIlfatrick et al. (2021) mirrored the findings from the study by Graham-Wisener et al. (2022). For instance, McIlfatrick et al. (2021) found that death-related experiences, normalising death-related conversations and increasing knowledge of ACP were vital to encouraging ACP behaviours such as engaging in end-of-life conversations. For example, participants stated that a lack of knowledge about ACP impeded public engagement, thus indicating that disseminating information about ACP would promote ACP behaviours (McIlfatrick et al., 2021). Participants cited a variety of ways that this information could be distributed in order to encourage early discussions around advance care planning (i.e., TV, newspapers, radio, billboards, social media, GP surgeries and libraries) (McIlfatrick et al., 2021). Moreover, like Graham-Wisener et al. (2022), participants viewed normalising death-related conversations as key to encouraging advance care planning, arguing that implementing ACP information into the school curriculum would help to reduce the death taboo and death-related superstitions (McIlfatrick et al., 2021). Supporting 45 McIlfatrick et al. (2021), Wilson et al. (2022) also found that participants believed that normalising death-related conversations could be achieved by educating children about death-related issues. In addition, Wilson et al. (2022) found that participants suggested incorporating humour into death-related conversations to normalise death communication. In the study by Islam et al. (2021), participants suggested several ways to normalise death-related discussions within society. For example, participants indicated that there needed to be a cultural shift in how death is perceived, with a more positive approach needed to encourage death-related conversations, such as promoting acceptance of death as a regular part of our life cycle (Islam et al., 2021). Participants supported a public health approach by incorporating death and dying into TV programmes, social media, and the school curriculum (Islam et al., 2021). Mirroring this, the Spanish study by Reigada et al. (2021) found that participants believed that the topic of palliative care would come up at some point in their lives; therefore, students advocated for palliative education to be implemented in schools and universities through learning about the experiences of professionals, patients and family members. Participants from non-health-related courses were more likely to mention that death was a difficult topic than students from health-related backgrounds, thus indicating that prior exposure to death-related issues could encourage more openness around actively thinking and openly talking about the subject (Reigada et al., 2021). This could indicate that universities could be an excellent place to encourage death-related discussion and educate students on death-related issues, thus leading to more openness around death and dying. 1.3.3 Overview Previous research has focussed on the barriers and facilitators to death communication (See Table 2 for further details); however, no studies were identified that focused on facilitators only. Further research is needed to explore how facilitators of death communication arise, persist and change; therefore, a grounded theory methodology would be appropriate in exploring the process behind becoming open to death communication. Moreover, exploring the process behind becoming open to death communication could identify additional facilitators and explore how these aided in fostering more openness around death communication. The most frequently discussed facilitator was death-related experiences (Amjad et al., 2014; Banner et al., 2019; Fried et al., 2017; Glaudemans et al., 2020; Im et al., 2019; Peterson et al., 2018; Sanders et al., 2019). The consistent finding that death-related experiences can promote more openness towards death communication indicates that there is something important about witnessing such experiences. However, it is not helpful to suggest that only those who have prior death-related experiences can become open to death communication; therefore, there is merit in 46 exploring how openness to death communication can be encouraged regardless of prior exposure to death. Moreover, previous research has mainly focused on facilitators for engaging in ACP behaviours (Amjad et al., 2014; Banner et al., 2019; Fleming et al., 2016; Fried et al., 2017; Glaudemans et al., 2020; McIlfatrick et al., 2021; Peterson et al., 2018; Sanders et al., 2019; Stone et al., 2013; de Vries et al., 2019) however, becoming open to death has many far-reaching benefits beyond planning for the end of life and should, therefore, not be limited to advance care planning. Mirroring the research into barriers to death communication (See section 1.2), few studies explored the facilitators for death communication within the general public (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Wilson et al., 2022); therefore, there is a gap in the current literature that this study aims to fill. 1.4 Theme Three - Death Communication Interventions The review revealed thirteen studies that explored the influence of death communication interventions on openness to death (See Table 2 for further details). The findings indicated that death communication interventions could help to promote death-related discussions among the general public. The review revealed little research on death communication interventions within the UK (Abba et al., 2019), with the majority of research taking place in the US (Barrison & Davidson, 2021; Carney et al., 2021; Huang et al., 2016; Rabow et al., 2019; Radhakrishnan et al., 2019; Van Scoy et al., 2017; Van Scoy et al., 2020). Three types of death communication interventions were identified: conversational card games (Eneslätt et al., 2020; Radhakrishnan et al., 2019; Van Scoy et al., 2017; Van Scoy et al., 2020), education-only interventions (Carney et al., 2021) and interventions with both an educational and reflexive component (Abba et al., 2019; Barrison & Davidson, 2021; Bollig et al., 2021; Huang et al., 2016; Miller-Lewis et al., 2020; Nedjat-Haiem et al., 2018; Rabow et al., 2019; Radhakrishnan et al., 2019; Tieman et al., 2018). Interventions that combined both reflexivity and education were more successful in prompting death-related discussions post-intervention (Abba et al., 2019; Barrison & Davidson, 2021; Rabow et al., 2019; Tieman et al., 2018); however, all interventions reported an increase in death-related conversations with family and friends. Below, I have outlined the findings in relation to the three types of interventions identified in this review (i.e., Death Communication Workshops, Online Death Communication Courses and Conversational Card Games). 47 1.4.1 Online Death Communication Courses Three studies evaluated the use of online courses to increase engagement in death communication among the general public (Bollig et al., 2021; Miller-Lewis et al., 2020; Tieman et al., 2018). For example, Tieman et al. (2018) explored the influence of a six-week Massive Open Online Course (MOOC) 'Dying2Learn' on community death-related discussions. The course had an experiential focus (exploratory rather than didactic) and consisted of accessing content (articles/videos), posting reflexive comments and answering topic questions (Tieman et al., 2018). The topics covered included social issues around death and dying, how death and dying are portrayed in the media, the medicalisation of death, how society engages with death via language and humour, digital legacies and personal reflection activities (Tieman et al., 2018). Two hundred and eight participants completed the pre and post-intervention questionnaire (Tieman et al., 2018). The mixed methods study found that those who strongly disagreed with the statement "I am comfortable talking about death/dying" became more open to death communication post-intervention (Tieman et al., 2018). Pre-intervention surveys reported that 87.9% agreed or strongly agreed that they were comfortable with death communication, and post-intervention surveys reported that 95.6% agreed or strongly agreed that they were comfortable with death-related discussions (Tieman et al., 2018). Furthermore, of those who disagreed or strongly disagreed with feeling comfortable engaging in death-related discussions pre-intervention, 92.9% became more comfortable engaging in such discussions post-intervention (Tieman et al., 2018). Moreover, 79% of participants who strongly disagreed with feeling comfortable engaging in death-related discussions pre-intervention continued with the course post-enrolment, thus indicating that even those who felt uncomfortable engaging in such discussions still decided to take part, with no enrolees withdrawing from the course post enrolment (Tieman et al., 2018). Similar to the finding by Fried et al. (2017) in section 1.2 'Barriers to Death Communication', the study by Tieman et al. (2018) indicated that although participants felt comfortable engaging in death-related discussions, they felt as though others were not open to such discussions (Tieman et al., 2018). For example, participants who agreed or strongly agreed that they were open to death communication were more likely to report that most people were not comfortable engaging in death-related discussions (i.e., out of those who strongly agreed they were comfortable engaging in death-related discussions, 89.7% agreed or strongly agreed that others were not) (Tieman et al., 2018). Furthermore, the analysis indicated that there was little change in attitudes relating to the openness of others post-intervention (Tieman et al., 2018). This implies that the belief that others are unwilling to engage in such conversations could hinder or prevent individuals from initiating death-related conversations with others. The belief that others are unwilling to engage in death-48 related conversations is a significant barrier; however, exploring the process behind openness to death communication could suggest ways to overcome this barrier. Another mixed-method study by Bollig et al. (2021) explored the views and experiences of participants in an online Last Aid Course. The intervention explored four topics: dying as a normal part of life, reliving suffering, planning and saying goodbye (Bollig et al., 2021). The course included an education component (i.e., relieving pain, breathlessness, nausea, and information about local support and services) and a reflexive component (reflexive thought about death and dying generally) (Bollig et al., 2021). The study indicated that all modules were rated highly, and 99% of participants suggested they would recommend the course to others (Bollig et al., 2021). Most participants appreciated the death-related discussions and information about palliative care, with some suggesting that the intervention had given them a more confident approach to end-of-life care (Bollig et al., 2021). Unlike the study by Tieman et al. (2018), Bollig et al. (2021) did not measure the effect of the course on participants’ openness towards death communication; however, the high satisfaction rating given by participants indicates that this short (four modules each of 45-minute duration) intervention could be a useful tool to promote openness among the general public. The Dying2Learn MOOC used by Tieman et al. (2018) was explored in a qualitative study by Miller-Lewis et al. (2020), which examined the influence of the online course on death competence. The quantitative study of 134 participants from Australia, the UK, the US, New Zealand, and Canada used Burgen's 'Coping with Death Scale' to measure death competence (Burgen, 1981). The self-report questionnaire (comprised of thirty questions) used a 7-point Likert scale to assess aspects of coping with death pre and post-intervention. The questionnaire included items relating to the participant (i.e., "I can talk about my death with family and friends") and others (i.e., "I can communicate with the dying") (Miller-Lewis et al., 2020). The results indicated that the MOOC led to significant improvements in death competence scores over time, with participants reporting that they felt better prepared to cope with death (Miller-Lewis et al., 2020). Theoretically, an increase in death competence will impact people's openness towards death-related conversations. The increase in participants' death competence, as a consequence of the course, demonstrates the value of MOOCs in facilitating death communication among the general public. The study indicates that the MOOC's structure encouraged individuals to develop a 'community of practice', which enabled participants to support each other in communicating about death-related issues (Miller-Lewis et al., 2020). Unlike Tieman et al. (2018) and Bollig et al. (2021), the study used quantitative methods to assess death competence; therefore, the findings could have been strengthened by a mixed method approach as the use of qualitative data could have provided a more in-depth understanding of the impact of the course on death competence. 49 The studies cited above highlight the value of online death education interventions, emphasising the many far-reaching benefits of such interventions (Bollig et al., 2021; Miller-Lewis et al., 2020; Tieman et al., 2018). For example, the research shows that online death communication courses can provide individuals with a safe and supportive environment to engage in death-related discussions that may not occur in their everyday lives (Bollig et al., 2021; Miller-Lewis et al., 2020; Tieman et al., 2018). In addition, Tieman et al. (2018) found that those living in less advantaged areas were more likely to participate in the MOOC once enrolled, thus demonstrating that online learning platforms can be particularly valuable when trying to reach lower socio-economic areas. This is particularly pertinent given the connection between health literacy and lower socio-economic status, thus indicating the potential of mass open online courses to build knowledge and promote death-related communication in underserved groups. 1.4.2 Conversational Card Games The review found four studies that explored the use of conversational card games to encourage openness to death communication (Eneslätt et al., 2020; Radhakrishnan et al., 2019; Van Scoy et al., 2017; Van Scoy et al., 2020). For example, Van Scoy et al. (2017) used the card game 'My Gift Grace' to assess the influence of the intervention on ACP behaviours. The conversational game used 20 (out of the original 47) open-ended question cards to encourage members of the general public to initiate and partake in discussions around end-of-life care and wishes. Some questions were around medical decision-making, and others provided emotional respite for players (i.e., "What music do you want to be listening to on your last day alive?") (Van Scoy et al., 2017). Players would take turns drawing a card and reading it out. Players then wrote down their answer and discussed it with the group (players could also choose to pass). Participants dictated how much they shared, what they shared and when to move on to the next question. Players then traded counters to acknowledge moving, thoughtful or emotional responses. Before starting the game, the outcome of an unknown coin toss determined whether the player with the most or least game tokens won. The study used the transtheoretical model (TTM) of behaviour change as its conceptual framework (Prochaska & Velicer, 1997). The model suggests that behaviour change arises through five stages: pre-contemplation, contemplation, preparation, action and maintenance (Prochaska & Velicer, 1997). These stages are dependent on and influenced by other factors such as self-efficacy (an individual's belief in their capacity to change their behaviour), processes of change (behavioural activities such as pursuing information and experiential processes such as relationships with others) and decisional balance (attitudes towards the advantages and disadvantages of behaviour change) 50 (Prochaska & Velicer, 1997). The transtheoretical model of behaviour change suggests that readiness to change is nonlinear; instead, individuals move back and forth via ideas about readiness to change and action (Prochaska & Velicer, 1997). Validated questionnaires, informed by TTM, were used to measure decisional balance, stage of change and the processes of change. The study indicated that 78% of participants reported completing one advance care planning behaviour within three months post-intervention (the most commonly reported ACP behaviour was starting further advance care planning conversations with loved ones about end-of-life issues) (Van Scoy et al., 2017). Before the intervention, 21% of participants reported engaging in end-of-life discussions with family; this increased to 60% post-intervention (Van Scoy et al., 2017). In addition, 73% had advanced in stage of change for at least one of the advance care planning behaviours (Van Scoy et al., 2017). Furthermore, participants were significantly more likely to positively view advance care planning behaviours. The findings are consistent with behaviour change as predicted by the transtheoretical model of behaviour change; therefore, the study has a solid conceptual basis for explaining how the conversational card game helped participants to move towards ACP behaviour changes. Other studies have also explored the influence of the 'My Gift Grace' conversational card game on promoting death communication in ethnic minority populations (Radhakrishnan et al., 2019; Van Scoy et al., 2020). For example, Radhakrishnan et al. (2019) used a mixed methods design to explore the effectiveness of the conversational card game on increasing ACP behaviours in South Asian Indian Americans (SAIA). Like Van Scoy et al. (2017), Radhakrishnan et al. (2019) used TTM in conjunction with Social Cognitive Theory (SCT) (Bandura, 1977) to guide the study. As mentioned above, the Transtheoretical Model describes the processes of change individuals undergo to adopt health behaviour changes (Prochaska & Velicer, 1997). In addition, Bandura's Social Cognitive Theory indicates that behaviour change is reinforced via social support opportunities that encourage observational learning, self-efficacy and expectations through interactions with others (Bandura, 1977). The transtheoretical model of behaviour change and SCT were used to design and develop the validated ACP Engagement Survey to assess participants' engagement in ACP behaviours. The three-month follow-up survey indicated that the intervention improved knowledge, self-efficacy and readiness to engage in ACP, as 18% of participants were prompted to complete an advance directive. Moreover, the study found that 58% of those who completed the pre and post-intervention survey had engaged in at least one ACP behaviour (3 months post-intervention) (Radhakrishnan et al., 2019). For example, 42% had initiated end-of-life conversations with loved ones, and 15% had initiated such conversations with their healthcare providers (Radhakrishnan et 51 al., 2019). The qualitative data indicated that although most participants considered the game to be culturally neutral, some stated that the game was particularly valuable for increasing awareness of ACP in the SAIA community, where ACP was not typical for first-generation South Asian Indian Americans. Therefore, the study indicates that the game intervention can help raise awareness about ACP and motivate individuals from ethnic minority communities with a traditional reluctance to initiate and partake in pre-emptive death-related conversations about end-of-life planning. Similarly, Van Scoy et al. (2020) explored the effect of the same conversational game as Radhakrishnan et al. (2019) and Van Scoy et al. (2017) on ACP behaviours among African American individuals. The mixed methods study revealed that 98% of participants completed at least one advance care planning behaviour post-intervention, and 67% completed three or more advance care planning behaviours post-intervention, with 80% of participants initiating end-of-life discussions with loved ones (Van Scoy et al., 2020). In addition, the qualitative data found that participants viewed the intervention as enjoyable and emotionally beneficial, thus indicating that the conversational card game could help to promote advance care planning behaviours among African American individuals. In addition, a Swedish qualitative study used a similar conversational card game (DöBra cards) to explore the end-of-life preferences of older individuals (Eneslätt et al., 2020). The DöBra cards contain thirty-seven items considered important at the end of life (i.e., pain-free, not dying alone and having affairs in order) (Eneslätt et al., 2020). In addition, three wild cards were included to cover additional topics not included in the original thirty-seven. Participants were told to divide the cards into three categories: very important, somewhat important, and not important. Interviews were conducted in conjunction with the DöBra card game. The study found that the card game successfully stimulated participants' visualisations of future scenarios, providing context for their reasoning about end-of-life preferences (Eneslätt et al., 2020). This indicates that the DöBra card game could be a valuable tool to support reasoning about end-of-life issues without directing end-of-life discussions in a predetermined direction, thus enabling individuals to consider their underlying values, which may be context-specific (Eneslätt et al., 2020). As the research cited above suggests, conversational card games can help support discussions around what is important for individuals at the end of life, motivate them to engage in ACP behaviours, and advance their readiness. The above-mentioned conversational card interventions could overcome barriers such as the perception that death-related conversations are uncomfortable or awkward by reframing death-related discussions as enjoyable, positive experiences in which players can learn and share stories about each other's experiences. Moreover, the game format empowers individuals to contribute 52 without inhibitions and talk about sensitive and complex topics such as death and dying but also motivates people to continue engaging in such conversations with others (Radhakrishnan et al., 2019). In addition, the research cited above indicates that conversational card games can be useful in encouraging death-related conversations among ethnic minority populations, thus reducing health disparities relating to end-of-life care. Exploring the influence of conversational card games on openness towards death communication is essential; however, exploring how openness is achieved among the general population prior to engaging with death communication interventions would help to inform the development of such interventions and suggest ways in which to encourage the participation of those who may not be open to death communication. 1.4.3 Death Communication Workshops The review found six studies detailing death communication workshop interventions (Abba et al., 2019; Barrison & Davidson, 2021; Carney et al., 2021; Huang et al., 2016; Nedjat-Haiem et al., 2018; Rabow et al., 2019). In relation to research on the influence of death communication workshops on the general public, an American mixed methods study of one hundred and six participants aged 18- 75 or older explored the impact of a CHAT session (The Conversations: Health and Treatments) on advance care planning discussions and preparations among the general public (Carney et al., 2021). The session consisted of a one-hour presentation on the benefits of ACP, the importance of ACP discussions and information on the laws that regulate ACP; questions and concerns followed this. The study found that informing individuals of the benefits of advance care planning can help to change people's intentions regarding engaging in advance care planning discussions and putting advance care planning measures in place (Carney et al., 2021). For example, there was a significant increase in participants' intentions to implement advance care planning post-intervention (i.e., initiating such discussions with loved ones increased from 51% pre-intervention to 66.04% post-intervention) (Carney et al., 2021), thus indicating that educational interventions could impact advance care planning discussions and preparations among the general public. Similarly, a UK study by Abba et al. (2019) explored the impact of two public health interventions on promoting end-of-life discussion and preparation within the community. The first intervention (Awareness-Raising presentations) involved raising awareness of the importance of ACP and ACP-related discussions through PowerPoint aided talks, films and group discussions (Abba et al., 2019). The second intervention (‘How to’ Workshops) provided participants with the tools to facilitate death-related conversations through discussions, PowerPoint presentations and vignettes to prompt 53 further group discussions. Following this, participants were given an information pack to take home (Abba et al., 2019). Post-intervention, 69% of participants in the 'How to Workshop' and 57% in the 'Raising Awareness' intervention reported their intention to initiate a specific death-related conversation with known others (Abba et al., 2019). This could indicate that practical support to encourage such conversations is more valuable than education-only interventions. For example, the 'How to Workshop' intervention provided participants with valuable tools to help facilitate such conversations (e.g., planning what to say, talking upstream before the imminent need arises, identification of triggers to initiate such conversations, innating conversations by talking about your preferences and listening carefully). Moreover, 9% of participants at baseline stated that they had never engaged in conversations about end-of-life care; however, at follow-up (3 months post-intervention), these participants indicated that the intervention had promoted them to have those conversations (Abba et al., 2019) thus, indicating that community-based interventions can prompt individuals to become more open to death communication. However, the study indicated that participants aged 45 to 74 believed the workshops were more relevant than younger or older participants (Abba et al., 2019). Similarly, this age group also more often reported taking action due to participating in the workshop (Abba et al., 2019). This finding may suggest that the content was more relevant to this age range as opposed to those aged 18 -44 (i.e., this age group could consider end-of-life planning to be irrelevant to their current life stage); therefore, further research is needed to explore how openness to death can be achieved in all individuals regardless of age. The findings could help develop death communication interventions to encourage young adults to engage in such discussions. In addition, Barrison and Davidson (2021) assessed the feasibility of a health engagement workshop to promote ACP in seventy-four undergraduate students aged 18-25. The peer-led workshop consisted of an introductory discussion on ACP, including ACP terminology, followed by structured discussions among participants. The study found a significant increase in knowledge and confidence in advance care planning post-workshop (Barrison & Davidson, 2021). Additionally, the workshop prompted 44% of participants to engage in death-related discussions around end-of-life care with friends and family (Barrison & Davidson, 2021), thus indicating its usefulness in prompting death communication in young adults. This could suggest that unlike the workshop interventions explored by Abba et al. (2019), a peer-led intervention may be more successful in encouraging death-related conversations among young adults. Although the study found the workshop to be helpful in encouraging young adults to initiate and partake in death-related conversations, the sample consisted mainly of students interested in health-related topics; therefore, there could have been a 54 preexisting interest in advance care planning prior to completing the intervention (Barrison & Davidson, 2021). The review found two studies that explored the influence of death communication workshops on ethnic minority populations. For example, a mixed methods study by Huang et al. (2016) assessed the feasibility of the Thinking Ahead Project (TAP) to promote ACP among African Americans. Fifteen participants were assigned to the intervention group (TAP), and fifteen were assigned to the control group. Participants in the control group were provided with ACP educational materials and asked to review the material independently (no motivational interviewing, facilitated ACP discussions or guided coaching were provided). Participants in the intervention group received a 90-minute intervention (TAP) consisting of a semi-structured interview adapted from the Respecting Choices First Steps advance care planning protocol (an evidence-based ACP facilitation program) and guided AD coaching (advance care planning educational material was introduced in the session) (Huang et al., 2016). The study found that the intervention increased readiness and engagement among African-American individuals to complete an advance directive (Huang et al., 2016). For example, those who had never engaged in ACP conversations showed great interest in early engagement and open conversations (Huang et al., 2016). Furthermore, the multicomponent intervention addressed the psychological, cognitive and social factors involved in advance care planning conversations, enabling participants to move beyond barriers to openly engage in discussions (Huang et al., 2016). Similarly, Nedjat-Haiem et al. (2018) explored experiences with a counselling intervention using motivational interviewing (MI) techniques to promote advance care planning discussions among thirty-two older Latinos with advanced chronic diseases. The intervention included advance care planning education with MI counselling. Motivational interviewing counselling consisted of using/completing AD documentation, encouraging ACP discussions with others (family and healthcare providers) and applying AD information into action (by addressing barriers to engaging in/with advance care planning conversations and information). Like Van Scoy et al. (2017) and Radhakrishnan et al. (2019), Nedjat-Haiem et al. (2018) used the Transtheoretical Model of behaviour change to assess participants’ readiness to engage in ACP behaviours. Although Nedjat-Haiem et al. (2018) found that participants varied in their stage of readiness to engage in ACP, unlike Huang et al. (2016), the study found that some participants stayed in the pre-contemplation stage post-intervention. Those in the pre-contemplation stage indicated a lack of awareness around advance care planning issues and terminology, with some participants stating that they had never heard or thought about advance care planning prior to the intervention (Nedjat-Haiem et al., 2018). 55 Although participants had received ACP education and counselling, some stated they did not know how to take action (Nedjat-Haiem et al., 2018). Reasons for not taking action included confusion about ACP terminology, misunderstanding about the purpose of advance directives, believing that ACP did not apply to them (i.e., they were not sick enough yet) or the belief that if they followed the medical advice given, death would not occur (Nedjat-Haiem et al., 2018). However, 47% of participants reported that Spanish was their primary language, which could account for the confusion around ACP terminology (Nedjat-Haiem et al., 2018). Participants in the precontemplation stage wanted to shift the attention away from dying to instead focus on getting better. In relation to death communication, another aspect of the pre-contemplation stage was the difficult nature of ACP conversations. Participants stated that ACP conversations were difficult to discuss with loved ones and healthcare providers. Some participants indicated that cultural differences in death communication made it difficult to engage in such conversations (i.e., Spanish participants suggested that death is not discussed within their culture) (Nedjat-Haiem et al., 2018). In contrast to the studies cited above, the sample consisted of older Latinos with advanced chronic diseases, the most common being hypertension, cancer, diabetes and heart disease (Nedjat-Haiem et al., 2018). The findings could suggest that participants were less open to death communication due to their prior health conditions compared to similar studies on the general population. This implies that ACP may be more difficult for individuals who are potentially closer to death, stressing the importance of pre-emptive death-related conversations before the imminent need arises. In addition, the findings could also indicate that death communication workshops are more successful at promoting death-related discussions in populations without advance chronic diseases that may not want to think about death and dying. Similarly, a mixed methods study by Rabow et al. (2019) explored the influence of an advance care planning workshop on cancer patients and their family caregivers. The first session consisted of an introduction to ACP (including the facilitators' own experiences of ACP), information on care, hospice and choosing a DPOA. Following this, participants were provided with an information pack (including information on how to engage in death-related conversations, sample advance directives, a reading list, and information on other services within the community) (Rabow et al., 2019). After the workshop, participants were given two weeks to consider the following questions: What does quality of life mean for you at this time? What does "life support" mean to you? What are your criteria for stopping or continuing "life support?" (Rabow et al., 2019). Participants were instructed to think about their wishes, play Go Wish with their loved ones (Go Wish is the English version of the DöBra 56 card game mentioned above), name a durable power of attorney (DPOA) talk to their DPOA about their wishes, and document their wishes (as part of the Five Wishes form). The second session consisted of reviewing the Five Wishes document (both patient and caregiver) and sharing their experiences of the past two weeks (concerning their discussions and the ACP process). Following this, completed advance directives were notarised and scanned. The pre and post-ACP Engagement survey indicated that the mean readiness of participants to engage in ACP increased from 3.64 (out of five) pre-intervention to 4.26 (out of five) post-intervention) (Rabow et al., 2019). Furthermore, 65.4% of patients who attended both sessions had a new notarised advance directive (Rabow et al., 2019). The qualitative analysis found that the group setting (patients and their loved ones) was beneficial for initiating discussions and sharing their stories with others. Most participants revised their document due to the discussions they had with other participants, commenting that, as a result, their document was more personalised and meaningful (Rabow et al., 2019). Moreover, participants stated that discussing their end-of-life wishes in a group setting helped make the process less frightening (Rabow et al., 2019). This indicates the importance of engaging in pre-emptive death-related discussions in order to reduce fear and help individuals make more informed decisions about their end-of-life care. 1.4.4 Overview The findings indicated that death communication interventions could help to promote death-related discussions among the general public. In the studies cited above, the most common reported behaviour change (post-intervention) was initiating death-related conversations with others. This suggests that death communication interventions can be valuable tools to promote death communication among the general public. Previous research has shown a public willingness to engage in death communication interventions (Barrison & Davidson, 2021; Bollig et al., 2021; Carney et al., 2021; Miller-Lewis et al., 2020; Radhakrishnan et al., 2019; Tieman et al., 2018; Van Scoy et al., 2017; Van Scoy et al., 2020). However, it could be argued that those already open to death communication are more likely to engage in such interventions. For example, baseline results for most studies indicated that the majority of participants were already open to death-related conversations (Abba et al., 2019; Barrison & Davidson, 2021; Carney et al., 2021; Huang et al., 2016; Nedjat-Haiem et al., 2018; Rabow et al., 2019; Radhakrishnan et al., 2019; Tieman et al., 2018; Van Scoy et al., 2017; Van Scoy et al., 2020). Therefore, exploring the process behind how individuals become open to thinking and talking about death and dying could suggest ways to encourage individuals to attend such interventions. 57 In addition, the findings suggest that death communication interventions that promote death-related discussions accompanied by educational resources could be a useful public health strategy to promote openness within the general population; therefore, exploring how openness towards death communication is achieved could help inform the development of such interventions. Furthermore, most interventions focused on promoting advance care planning behaviours (Abba et al., 2019; Barrison & Davidson, 2021; Carney et al., 2021; Eneslätt et al., 2020; Rabow et al., 2019; Radhakrishnan et al., 2019; Van Scoy et al., 2017; Van Scoy et al., 2020). Previous research has indicated a need for open death-related discussions on various topics such as bereavement, euthanasia and talking to children about death (Miller-Lewis et al., 2020). Therefore, further research is needed to explore how individuals become open to death-related conversations more broadly. Furthermore, as noted in section 1.2, a lack of knowledge of end-of-life issues is a significant barrier to death communication. Research suggests that death communication interventions can reduce this barrier by providing information on end-of-life issues and ACP misconceptions; therefore, an exploratory study of the process behind openness to death communication would help inform future interventions aimed at facilitating death conversations among the general public. The review found that most studies into death communication interventions had predominantly female samples (Abba et al., 2019; Barrison & Davidson, 2021; Bollig et al., 2021; Carney et al., 2021; Miller-Lewis et al., 2020; Radhakrishnan et al., 2019; Tieman et al., 2018; Nedjat-Haiem et al., 2018; Van Scoy et al., 2020), with the exception of Huang et al. (2016) which had a 43% female-based sample; thus limiting knowledge about the influence of such interventions on the male population. Moreover, most studies relied on self-report measures to assess readiness to engage in end-of-life conversations, therefore leaving the potential for social desirability bias (overreporting of death-related discussions) (Abba et al., 2019; Barrison & Davidson, 2021; Carney et al., 2021; Miller-Lewis et al., 2020; Radhakrishnan et al., 2019; Tieman et al., 2018; Van Scoy et al., 2020). In addition, self-report surveys cannot address the long-term effects of such interventions on people's willingness to engage in death-related communication; therefore, an exploratory study into the process behind openness to death could suggest ways in which to promote continued openness towards thinking and talking about death and dying. As stated above, a scoping review was conducted to assess what is currently known about how individuals become open to death communication. In doing so, I was able to provide comprehensive coverage of the available literature on the broad topic of death communication, thus providing background and context for the research question. 58 The following chapter presents a narrative review of the literature relevant to openness to thinking and talking about death and dying, which was conducted post-analysis in accordance with a Charmaz-influenced approach to the literature review (the different grounded theory approaches to conducting the literature review and the approach taken in this study will be explained in section 2.1). The narrative review draws on research that relates directly to the findings of the current study. 59 Chapter Two: Narrative Literature Review 2.1 Introduction This chapter details the different grounded theory approaches to conducting the literature review and the approach taken in this study. I then go on to explore the existing literature in relation to the research topic. Drawing on previous research, I situate the research question within the existing literature. I then provide a rationale for why this is an important topic to explore further. Following this, I present the research aims and objectives. In most approaches to research, the literature review is conducted before data collection and analysis to help the researcher contextualise the research within the existing literature (Ramalho et al., 2015). However, in a grounded theory study, conducting the literature review before data collection and analysis is often seen as a "constraining exercise rather than a guiding one" (Ramalho et al., 2015). This is because, in a grounded theory study, it is assumed that the researcher should not hold any preconceived ideas about the research topic. Grounded theory takes an inductive approach where theory is derived from investigating the phenomenon under investigation instead of starting with a theory or hypothesis, which will then be tested (Walker, 2016). Therefore, grounded theorists have long debated the literature review's role. Delaying the literature review was first proposed by classic grounded theorists Glaser and Strauss (1967). Glaser and Strauss argued that researchers should concentrate on developing a theory that worked to explain the phenomenon being studied (Glaser & Strauss, 1967). Their advice was to "ignore the literature and theory" to ensure that the categories that emerge from the data "will not be contaminated" (Glaser & Strauss, 1967). As a result, Glaser and Strauss (1967) suggested that conducting the literature review before analysis could prevent the theory from being truly "grounded in the data" as the researcher could impose existing theories onto the analysis and emerging theory. It is for this reason that Glaser and Strauss (1967) advised that the literature review should be postponed until after data collection and analysis. This view has been maintained by Glaser (1998), who argued that delaying the literature review enables the researcher to remain open to all possible theoretical interpretations present in the data. However, Strauss and Corbin (1990) questioned whether delaying the literature review was naïve, contending that all researchers bring some prior knowledge to the study which is about to begin. This view is supported by Dey (2003), having critiqued Glaser and Strauss' view of delaying the literature review by arguing that "there is a difference between an open mind and an empty head (p. 65)". 60 However, now grounded theorists recognise that a lack of familiarity with the research topic is unlikely and unrealistic (Thornberg, 2011). Charmaz (2014) argues that it is "naïve" to assume that researchers do not have prior knowledge in their research field before choosing their research topic. Instead of postponing the literature review, Charmaz (2014) suggests that the researcher should conduct a preliminary search to establish significant theories and studies related to the research topic. This enables the researcher to identify which areas to research and what methodology should be used, as well as satisfying the requirements of research institutions. This study employed a Charmaz-influenced approach to reviewing the literature. Prior to data collection and analysis, preliminary searches into the topic of death communication were conducted. This acted as an initial review where gaps were identified in the research to indicate that this topic is worthy of research. These areas included: • Before conducting this study, little research had examined how individuals begin to actively think and openly talk about death and dying (Kirshbaum et al., 2011). • Most health research has focused on the barriers preventing death-related conversations (Bachner et al., 2014; Betker et al., 2021; Bernard et al., 202; Boerner et al., 2021; Carmel et al., 2020; De Souza et al., 2020; Im et al., 2019; Jakoby, 2014; Jeong et al., 2015; Reich et al., 2022) rather than exploring how individuals become open to these types of conversations in the first place. • Most research has come from a sociological perspective exploring whether society has formed a death-denying culture (Kellehear, 1984; Walter, 1992). • Numerous surveys have been conducted that suggested that people actively avoid death-related discussions within the UK (Biscuit Tin, 2021; Sue Ryder, 2019; The Academy of Medical Science and Ipsos Mori, 2019); however, the reasons behind a lack of death communication have yet to be researched. • Most research has mainly focused on encouraging openness with those that are elderly or terminally ill within an end-of-life context (Amjad et al., 2014; Bernard et al., 2020; Glaudemans et al., 2020; Im et al., 2019; Klemmt et al., 2020; Peterson et al., 2018; Stone et al., 2013; Sutherland, 2019). • Psychological studies of attitudes towards death and dying have mainly focused on an individual's fear of death (Depaola et al., 2003; Iverach & Menzies, 2012; Krause & Hayward, 2014; Sinoff, 2017) instead of examining the reason behind why those factors are feared. The above will be further explained in section 2.8 (Aims and objectives). 61 Charmaz argues that the preliminary review should "lie fallow" until the later stages of data analysis to encourage the researcher to use their own ideas and not push preconceived concepts and categories onto the emerging analysis (Charmaz, 2014). Therefore, a more substantial narrative literature review was conducted after the second stage of analysis, focused coding, to ensure that the data analysis was prioritised over any other input (Charmaz, 2014). At this stage, the research is located within the relevant literature. A further reason Charmaz (2014) gives for postponing the literature review is that it cannot be known what literature will be relevant to the research topic prior to starting the study (Charmaz, 2014). Due to grounded theories' inductive nature, literature that may be deemed relevant at the beginning of the study may not be regarded as relevant by the time the substantive theory emerges. This is particularly relevant to this study, which took place over four years, and within that timeframe, new literature on the topic became available. 2.1.1 Search Strategy During the preliminary search, three electronic databases were explored (PsycINFO, PsycArticles, and the University of Huddersfield’s’ Summon database) using the search terms talking about death, death-related conversations, end-of-life conversations and thinking and talking about death and dying. In addition, grey literature was used, including some information gathered from the social media platform Twitter. All papers were examined in relation to the aim of the study, that is, exploring the process behind how individuals become open to death communication. A paper was accepted and used if considered relevant to the research topic. The information gathered from the preliminary search was used to develop the introduction and rationale of this thesis. Building on the preliminary search conducted prior to data collection and analysis, a more substantial narrative literature review was conducted post-analysis. Following a constructivist grounded theory approach to the literature review, the search terms were amended to reflect the key findings. 2.2 The Benefits of Openness The thought of death can be frightening; therefore, it could be viewed as natural to avoid thinking and talking about death on both an individual and societal level (Zimmerman, 2007). However, an extensive body of evidence indicates the benefits of pre-emptively thinking about and engaging in death-related conversations (Department of Health, 2008; Llewellyn et al., 2016; MacKenzie & Lasota, 2020; Seymour et al., 2010). For example, the Department of Health (2008) identified several positive consequences of encouraging individuals to actively think and openly talk about death and dying, such as: 62 • Reducing fears around the dying process • Preventing distress and regret for surviving family members around end-of-life wishes • Helping close relatives to support the dying loved one • Preventing the use of inappropriate interventions to prolong life • Encouraging organ donation • Improving quality of life • Encouraging conversations with family and friends around funeral wishes • Encouraging discussion about grief and loss resulting in the bereaved feeling less isolated Although there is broad recognition of the need to encourage individuals to pre-emptively think and talk about death-related issues (Department of Health, 2008; Llewellyn et al., 2016; MacKenzie & Lasota, 2020; Seymour et al., 2010), research indicates that people are reluctant to engage in discussions around end-of-life care (Biscuit Tin, 2021; The Academy of Medical Science and Ipsos Mori, 2019; Sue Ryder, 2019). Murtagh et al. (2014) estimated that 69% to 82% of people will need palliative care at the end of life, and with an ageing population, that number is likely to rise. Consequently, end-of-life planning is becoming a significant public health issue (Cox et al., 2003). Understanding public attitudes towards death are essential in encouraging individuals to engage in conversations around end-of-life planning (Cox et al., 2003). However, recent research is limited, with researchers suggesting that further, more rigorous research is needed (Cox et al., 2003). Advance care planning is important in enabling individuals to receive the kind of care they want at the end of life (Llewellyn et al., 2016). However, research suggests that only a small percentage of UK residents have engaged in conversations around end-of-life planning (Dying Matters, 2018; Marie Curie, 2021). Advance care planning involves discussing, documenting and recording an individual’s preferences for end-of-life care (Ackermann, 2016). Current end-of-life care policy suggests that promoting death-related conversations among the general public will encourage advance care planning (Department of Health, 2008). Therefore, exploring how individuals become open to death and dying could help improve end-of-life care and inform policy on encouraging pre-emptive death-related discussions, thus, resulting in more end-of-life planning and preparedness. Encouraging individuals to engage in advance care planning has many benefits, such as improving the experience and quality of end-of-life care for patients and their loved ones (Brinkman-63 Stoppelenburg et al., 2014; Detering et al., 2010). Moreover, actively thinking about, discussing and planning for end-of-life care can help achieve a ‘good death’ (Flaskerud, 2017; MacKenzie & Lasota, 2020). A ‘good death’ will look different for everyone, and although individuals may not be able to choose how they die, many will have choices about what the dying process looks like. The concept of a 'good death' has been critiqued by various disciplines, including psychology, sociology, anthropology, medicine and theology (Granda-Cameron & Houldin, 2012). One major criticism of the 'good death' is that it depends on the dying person's perspective; therefore, there is no external criterion of what a good death involves (Flaskerud, 2017). Research suggests that patients, family members, caregivers and physicians vary in their perceptions of a good death (Granda-Cameron & Houldin, 2012; Meier et al., 2016; Payne et al., 1996; Steinhauser et al., 2001). Supporting this is a study by Meier et al. (2016). Meier et al. (2016) conducted a literature review of thirty-six articles between 1996 to 2015 to examine the definitions of a good death from the perspectives of patients, healthcare providers and relatives. Although the study identified commonalities between definitions of a good death, such as being pain-free, there were some differences. For example, relatives rated quality of life as more important (70%) than healthcare professionals (22%) and patients (35%) (Meier et al., 2016). This finding is particularly pertinent when considering Cottrell and Duggleby's (2016) literature review of 39 articles from 1992 to 2014, revealing that healthcare professionals may control a patient's dying experience by subscribing to the 'good death' agenda. In doing so, healthcare professionals may pressure patients into dying according to what they consider to be the 'good death' ideal. This is also supported by a qualitative study of thirteen hospice managers, which revealed that 'bad deaths' were often blamed on an individual's negative attitude towards hospice services and the prospect of dying (Semino et al., 2014). Therefore, the 'good death' discourse may limit a patient's freedom of choice by dictating what is considered a 'good death'. As there is no agreed-upon concrete definition of a good death, encouraging more openness towards death could be the first step towards changing restrictive institutional practices and policies around the 'good death' agenda (Tullis et al., 2017). Moreover, research indicates that cultural and demographic differences influence constructions of a good death. Culture shapes the meaning individuals give to death and dying; therefore, perceptions of the 'good death' will differ across cultures (Krikorian et al., 2020). As the UK is an expanding multi-cultural society (ONS, 2021), it is important to consider the cultural differences in perceptions of the 'good death'. For example, recent research shows that cultures which value individualism, such as the UK, view independence and autonomy as central to achieving a good death (Krikorian et al., 2020). Whereas Asian cultures, such as Japan and China, do not view autonomy as an essential component of a 'good death' (Krikorian et al., 2020). For instance, a study by Akechi et al. (2012) 64 found that Japanese cancer patients viewed "leaving the decisions to a medical expert" as central to achieving a 'good death'. In addition, age has been found to influence people's perception of a good death. For instance, older patients have been found not to value individuality and autonomy but instead place greater trust in allowing relatives and medical staff to make decisions for them (Gott et al., 2008). Although definitions of a good death are highly individualistic, individuals are more likely to experience a 'good death' by letting others know about their end-of-life care and wishes; therefore, encouraging more openness towards death is important in enabling individuals to experience a 'good death'. Although pre-emptive end-of-life conversations can help individuals to make more informed decisions about their end-of-life care (MacKenzie & Lasota, 2020), unfortunately, these conversations often happen late in the dying process (Borreani & Miccinesi, 2008). Research indicates several barriers preventing individuals from discussing end-of-life issues, such as the unpredictable nature of death (Glaudemans et al., 2020; Wilson et al., 2022), death seeming too distant to plan for (Bernard et al., 2020; Glaudemans et al., 2020; Im et al., 2019; Stone et al., 2013), fear of upsetting or burdening others (Bernard et al., 2020; De Souza et al., 2020; Glaudemans et al., 2020; Graham-Wisener et al., 2022; Islam et al., 2021; Klemmt et al., 2020; McIlfatrick et al., 2021; Peterson et al., 2018) and a lack of awareness of end-of-life issues (Bernard et al., 2020; Jeong et al., 2015; Marie Curie, 2021; McIlfatrick et al., 2021; Reigada et al., 2021; Schickedanz et al., 2009; Stone et al., 2013; The Academy of Medical Science and Ipsos Mori, 2019). Previous research on this topic has focused on the barriers preventing death-related conversations (See Table 2 for further details). Some studies indicated that healthcare professionals find it challenging to initiate and partake in death-related conversations with their patients (MacKenzie & Lasota, 2020; Reid et al., 2015; Sutherland, 2019; Travers & Taylor, 2016). The identified barriers preventing healthcare workers from engaging in death-related conversations with their patients include a perceived lack of skills and training (Department of Health, 2008; MacKenzie & Lasota, 2020; Travers & Taylor, 2016; White & Coyne, 2011), a culture of seeing death as a failure (Llewellyn et al., 2016; MacKenzie & Lasota, 2020) and high levels of personal death anxiety (Black, 2007; Deffner & Bell, 2005). However, exploring how individuals become open to actively thinking and openly talking about death could suggest ways to overcome these identified barriers. There is broad recognition of the need to encourage more openness towards death (Seymour et al., 2010; Llewellyn et al., 2016). As stated above, actively thinking and openly talking about end-of-life care is necessary for planning and preparing for end-of-life. Although there is increasing evidence for the positive impact of public health approaches to end-of-life care (Sallnow et al., 2016), further 65 research needs to be conducted to inform such interventions on how to promote early engagement within the general public (Graham-Wisener et al., 2022). Although it is widely accepted that pre-emptively thinking and talking about death and dying is important for all individuals, irrespective of health or age, the focus of encouraging death-related conversations has largely centred on those close to death and confined within the context of advance care planning (Bernard et al., 2020; De Souza et al., 2020; Glaudemans et al., 2020; Klemmt et al., 2020; Peterson et al., 2018). For example, previous research has mainly focused on advance care planning with older populations or individuals with health conditions (Amjad et al., 2014; Bernard et al., 2020; Fried et al., 2017; Glaudemans et al., 2020; Im et al., 2019; Klemmt et al., 2020; Peterson et al., 2018; Stone et al., 2013); therefore, there is a limited understanding of the attitudes towards end-of-life planning in the general population. However, recent research suggests that young, healthy adults are increasingly interested in discussions around advance care planning (Lyon et al., 2004; Sanders & Robinson, 2017). For example, a qualitative study conducted by Sanders and Robinson (2017) explored the reactions of eighty college students following the completion of their advance care plans. Participants found engaging in advance care planning a positive experience that fostered personal growth. Therefore, it is important to explore how individuals can achieve openness more generally, regardless of their health status and age. Although there are many benefits in encouraging individuals to actively think and openly talk about death and dying in the context of end-of-life care and planning, it is equally beneficial to explore how individuals become open to death to help those who have been bereaved. Approximately 97% of adults in the UK have experienced the death of someone close (Co-Op, 2018), and being able to openly discuss death can help with feelings of isolation and grief (Dying Matters, 2014; Jakoby, 2014; Robson, 2020). Whilst grief is not a medical illness, research suggests that bereavement can severely impact an individuals’ physical and psychological well-being (Byrne & Raphael, 1997; Chen et al., 1999; Christiansen et al., 2013; Detering et al., 2010; Kaltman & Bonanno, 2003; Stroebe et al., 2007; Wamser-Nanney et al., 2018). Although most individuals will experience a bereavement in their lifetime, evidence indicates that people living in the UK are uncomfortable engaging in death-related conversations with those that have recently been bereaved (Co-Op, 2018; Dying Matters, 2014; Together for Short Lives, 2019). However, research suggests that those who have recently been bereaved desire to engage in death-related conversations with others (Hospice UK, 2020; Jakoby, 2014). For example, a survey conducted by Hospice UK (2020) revealed that 72% of those recently bereaved would rather their friends and family say the ‘wrong’ thing than to say nothing at all. This statistic is particularly pertinent when considering the substantial number of unanticipated deaths due to COVID-19. Therefore, encouraging more openness towards death will help normalise death-66 related conversations enabling individuals to better support themselves and those around them after a bereavement. 2.3 A Public Health Approach to Palliative Care As stated in section 2.2, with an increasing ageing population, end-of-life care is becoming a significant public health issue (Cox et al., 2003). A public health approach to palliative care acknowledges that formal healthcare provision is limited; therefore, efforts to improve health and well-being at the end of life are best supported when healthcare is accompanied by social efforts (Sallnow et al., 2016). A public health approach to end-of-life care aims to promote social efforts to improve health and well-being at the end of life through community engagement, public education, improvement of social capital, partnerships and policy development (Richard et al., 2020). Such an approach recognises that health goes beyond injury and disease to not only include behaviour and lifestyle factors but also recognises that “social change can be a prerequisite for health” (Archibald et al., 2016). New contemporary challenges such as a new demography of death, social isolation, inequality of access to services for hidden populations and the over-medicalisation of death have led many to re-examine a public health approach to palliative care, taking into consideration these contemporary concerns (Sallnow et al., 2016). Cultural, medical and socio-economic solutions need to be addressed in order to provide meaningful palliative care (i.e., such factors will determine the kind of death individuals will face) (Stjernswärd, 2007); therefore, research suggests that a community approach is required in order to access all those in need of palliative care. There has been increasing recognition that to improve experiences of death, dying and bereavement, a social model of health is needed (Archibald et al., 2016). The Health Promoting Palliative Care model designed by Kellehear (1999) pushes for a social model of end-of-life care, where death and dying are positioned within a community context. A health-promoting response to end-of-life care involves a series of social efforts by institutions, organisations, communities and governments to improve health and well-being at the end of life (Sallnow et al., 2016). Those who support the Health Promoting Palliative Care model believe that community capacity should be prioritised over mainstream palliative care provision (Mills et al., 2015). Community capacity is built by promoting openness towards death and dying and preparing communities for the end of life (Mills et al., 2015). One response has been the ‘Compassionate Communities’ initiative (Kellehear, 2005). Compassionate Communities are a public health approach to palliative care derived from the WHO concept of ‘Healthy Communities or ‘Healthy Cities’ (Rawlings et al., 2021). The Compassionate Communities initiative is a significant form of community development that acknowledges that 67 death, dying, and bereavement are the responsibility of all, not solely health and social care professionals (Abel & Kellehear, 2016). The Compassionate Communities initiative aims to create supportive environments for death, dying and bereavement by initiating behaviour change and raising public awareness (Richard et al., 2020), thus enabling individuals to become more open to death communication and respond more compassionately to those experiencing death, dying and bereavement. Such initiatives involve the communal efforts of workplaces, schools, the media, places of worship and social organisations to reflect upon their death-related experiences and develop local responses and policies (Karapliagkou & Kellehear, 2014). In doing so, individuals become actively involved in their end-of-life concerns, thus, changing cultures, social environments and attitudes regarding end-of-life experiences and practices (Karapliagkou & Kellehear, 2014). A health-promoting response to end-of-life care has received considerable attention, with hundreds of Compassionate Communities and Cities established worldwide (Librada-Flores et al., 2020), thus indicating a willingness to develop community-based models of end-of-life care. Community-based end-of-life care would encourage more openness to engage in death-related discussions, leading to greater involvement in decision-making, making our end-of-life preferences known and accepting death as a natural part of our life cycle (Swerissen & Duckett, 2015). Research suggests that a community engagement approach to end-of-life care would encourage more openness towards death; however, there is a lack of research on implementing and evaluating such initiatives (Librada-Flores et al., 2020). In order to develop community-led initiatives aimed at promoting death-related discussions within the general public, it is crucial to develop a theoretically informed understanding of the processes behind this behaviour change. If, as a society, we cannot openly discuss death-related issues with our family members, healthcare providers and our communities, we will not have the knowledge, skills and confidence to engage in end-of-life decision-making or support others within the community. Therefore, an exploratory study looking at how individuals become open to death communication could help inform community engagement programmes such as the Compassionate Communities initiative. 2.4 Death-Related Fears and Anxieties It could be argued that an absence of openness towards death can be attributed to a person’s fear of death or death anxiety. Research suggests that the fear of death can prevent individuals from engaging in death-related conversations (Brown et al., 2014). As fear is subjective, death-related fears and anxieties will vary depending on various factors such as past experiences, cultural norms, knowledge and perceptions of death (Grubb & Arthur, 2016; Kellams & Blascovich, 2012; Rodenbach et al., 2016; Sinclair, 2011). 68 Research suggests that levels of death anxiety may change depending on individual factors such as age (Sinoff, 2017), gender (Iverach & Menzies, 2012), ethnicity (Depaola et al., 2003) and religion (Krause & Hayward, 2014). For example, a study conducted by Sinoff (2017) revealed that older individuals are more likely to fear the process of dying, whereas younger individuals are more prone to fear death itself. Similarly, previous research has found differences between ethnic groups and their death anxieties (Depaola et al., 2003). For example, Depaola et al. (2003) found that elderly white participants reported a higher level of death anxiety around the process of dying when compared to African American participants. Additionally, research suggests that gender can affect fears around death and dying. For example, a study conducted by Iverach and Menzies (2012) suggests that women are more likely than men to fear the death of loved ones and worry about the impact of their death on those left behind. High levels of death anxiety have been linked to a wide range of adverse outcomes. For example, death anxiety has been linked with the prevalence of mental health conditions such as OCD, anxiety disorders and posttraumatic stress (PTSD) (Iverach & Menzies, 2014). In addition, death anxiety can affect how healthcare providers discuss end-of-life planning with their patients (Braun et al., 2010). For example, healthcare providers with a higher level of death anxiety are more likely to avoid discussions around end-of-life planning with their terminally ill patients than are their low-anxiety counterparts, thus, affecting their patients’ end-of-life care (Black, 2007; Deffner & Bell, 2005; Peters et al., 2013). For example, Black’s (2007) quantitative survey of 135 participants found that healthcare professionals with a negative attitude towards death were less likely to initiate discussions around advance directives (ADs) with their patients. In contrast, death acceptance was positively correlated with the initiation and discussion of ADs (Black, 2007). In addition, Peters et al. (2013) conducted a literature review which explored the impact of death anxiety on how nurses cared for their dying patients. The review indicated that younger nurses showed higher levels of death anxiety, which resulted in a more negative attitude towards end-of-life patient care (Peters et al., 2013). However, reducing death anxiety has been shown to have many benefits, such as increasing the quality of care for dying patients (Gurdogan et al., 2019), encouraging death acceptance (Lekes et al., 2022) and fostering a greater appreciation for life (Buckle, 2013; Lekes et al., 2022). Nevertheless, it is essential to note that there are multidisciplinary teams involved in severe illness conversations (Department of Health, 2016; Myrhøj et al., 2023) and practice protocols and guidelines in place to help healthcare providers navigate these challenging conversations (National Health Service, 2011; NICE, 2019). Moreover, research indicates that interventions to reduce death anxiety can lead to more openness around death (Buckle, 2013; Hayasaki, 2014; Lekes, 2021; McClatchey & King, 2015; Testoni et al., 2021; Wong, 2009). Therefore, relieving death anxiety may play an important part in encouraging 69 individuals to actively think and openly talk about death and dying. Previous research into death anxiety has employed quantitative methods using a variety of Likert scales to examine the factors contributing to a person’s fear of death. However, death anxiety is a multifaceted construct and, therefore, hard to define. Death anxiety has been conceptualised to include the following: fear of one’s own death, fear of the death of loved ones, fear of the dying of loved ones and the fear of one’s own dying (Gire, 2014). Although such methods are useful in examining the factors contributing to an individual’s fear of death, such methods fail to underpin the meaning behind why these factors are feared. Psychological research into death anxiety has mainly focused on terror management theory (TMT) (Rosenblatt et al., 1989). For over thirty years, terror management theory has been used to explain how individuals protect themselves from death anxiety. Terror management theory is influenced by Becker’s seminal book, ‘The Denial of Death’, which asserts that our actions are mainly carried out in order to evade or avoid death (Becker, 1973). People are temporally conscious, abstract thinking, self-aware beings and are therefore able to comprehend their own mortality (Becker, 1973). People, like animals, possess the innate drive for self-preservation; however, unlike other animals, people have developed complex and advanced cognitive abilities that allow them to be not only self-aware but also predict future outcomes (Becker, 1973). Therefore, individuals are conscious of the certainty of death and that it can happen at any moment. As a result, the tension between our desire for self-preservation and the awareness of the unpredictable nature of death can provoke anxiety when individuals are reminded of their own mortality. According to terror management theory (TMT), mortality salience (awareness of death) can increase death anxiety; as such, people have developed various defence mechanisms to combat death anxiety (Rosenblatt et al., 1989). TMT proposes that individuals can protect themselves from death anxiety by adhering to their cultural worldviews and raising their self-esteem (Greenberg et al., 1990; Rosenblatt et al., 1989). However, some argue that TMT’s emphasis on defence mechanisms ignores personal resilience factors that lessen levels of death anxiety caused by mortality salience (Dursun, 2022). Another theory, meaning management theory (MMT), proposes that people are meaning-making and meaning-seeking; therefore, our primary motivations are to survive and to find meaning and reason to survive (Wong & Tomer, 2011). Meaning management theory asserts that because individuals want to live meaningful lives, people tend to focus on positive growth rather than developing defence mechanisms to cope with death anxiety (Wong & Tomer, 2011). Studies have demonstrated that meaning in life can negate death anxiety (Lyke, 2013; Tang et al., 2002; Routledge & Juhl, 2010). For example, a study by Tang et al. (2002) found that those who accepted death and perceived a greater meaning in life experienced less death anxiety. 70 Similarly, a study by Routledge and Juhl (2010) explored the relationship between meaning in life and death anxiety in sixty psychology students. Participants in the experimental group were asked to reflect on their own mortality, whereas participants in the control group we asked to reflect on the experience of failing a test (Routledge & Juhl, 2010). The study found that those with a higher meaning in life experienced lower levels of death anxiety (Routledge & Juhl, 2010). Supporting this, a study by Lyke (2013) found that meaning in life negatively predicted fear of death in 168 participants aged 18-35. Similarly, studies have shown that frequently reflecting on mortality can prompt people to re-evaluate their materialistic values, thus encouraging a move towards more growth-orientated, meaningful intrinsic values (Vail et al., 2012). Psychological research has mainly focused on death anxiety and its association with terror management theory. Concerning the research cited above, although TMT helps explain how individuals protect themselves from death anxiety, this theory does not explain how individuals can be encouraged to actively think and openly talk about death in a way that reduces death-related anxiety. 2.5 The Death ‘Taboo’ An absence of openness towards death and dying within the western world is often attributed to the death taboo. The notion that death is 'taboo' and western society is death-denying has been disputed (Kellehear, 1984; Walter, 1991;), despite inconsistent evidence for this assertion (British Social Attitudes Survey, 2012; Marie Curie, 2021). Contestation around the death taboo has mainly emerged from sociological literature arguing that the concept is reductionist and simplistic (Kellehear, 1984; Lee, 2008; Sayer, 2010; Walter, 1991); however, many psychological studies frequently proclaim that individuals avoid or deny death (Kang, 2021; Solomon et al., 2015; Vandrevala, 2002). This argument has mainly come from a clinical perspective which focuses on the death taboo as a tangible barrier to effective care (i.e., the need for clinicians to talk openly about end-of-life care and avoid the use of euphemisms when discussing death and dying) (Barlet et al., 2022). The notion that death is taboo was popularised through the work of Gorer (1955) and Aries (1981). In Geoffrey Gorer's influential essay titled 'The Pornography of Death', he argued that death had replaced the sex taboo in the nineteenth century. Aries (1981) and Gorer (1955) contend that attitudes towards death have worsened since the 19th century due to the medicalisation of death, a decline in mourning rituals and a growth in secularism; therefore, death has become avoided, unfamiliar and restricted (Gorer, 1955; Aries, 1981). However, such research has been heavily 71 criticised for romanticising death rituals (Walter, 1991) or, as Gorer refers to them, paying respect to the "beautiful corpses" (Gorer, 1955, p50). The existence of the death taboo has been widely challenged and disputed (Kellehear, 1984; Lee, 2008; Sayer, 2010; Walter, 1991). For instance, Sayer (2010) asserts that although death has become institutionalised and managed by specialists, this is evidence of society's acknowledgement of death, where death is managed socially and organisationally. Therefore, implying that the changes proposed by Aries (1981) and Gorer (1955) as contributing to the death taboo are evidence of societies evolving relationship with death. Walter (1991) argues that the death taboo has been "grossly overdrawn". Walter (1991) suggests that death-related conversations are not taboo; instead, such conversations are "rule-governed"; therefore, there is a right time and place to engage in such conversations (Walter, 1991). Additionally, Lee (2008) argues that there has been a 're-enchantment' of death. Lee (2008) claims that due to a rise in spirituality, a segment of society believes that death is no longer finite, holding the belief that their spirit or consciousness will continue after death; as a result, individuals are more open to talking about death (Lee, 2008). Furthermore, Mellor (1993), Walter (1991), and Lee (2008) argue that the rising popularity of death in the media and academia indicates that if death was a taboo, the taboo no longer exists. For example, Lee (2008) suggests that society's changing attitude towards death can be seen in the growing popularity of death-related topics such as after-death communication and near-death experiences. Walter (1991) proposes the idea of a 'limited taboo', suggesting that a reluctance to engage in death-related conversations is not the result of a societal taboo; instead, certain subgroups find these kinds of discussions difficult to partake in. It could be argued that children are part of a 'limited taboo' (Paul, 2019). For example, a qualitative study conducted by Paul (2019) found that social norms around being a child may prevent adults from engaging in death-related conversations with children. Bandura's social learning theory could be used to explain why death-related discussions might be avoided in the UK. For example, Bandura (1977) argues that children vicariously develop fears via observing others. Therefore, a child may develop a fear of death if they observe a significant adult fearing death. The same could be argued for engaging in death-related conversations, e.g., if children observe adults avoiding death-related conversations, they may learn to avoid such conversations in later life. Therefore, exploring how individuals become open to death and dying could promote more openness towards death with children, resulting in a more death open society. 72 Although these theories are helpful in explaining how society has shaped attitudes towards death and dying, they ignore how individual perspectives and experiences towards death may contribute to an individual's openness towards thinking and talking about death. Moreover, such theories explain the reasons behind why such conversations are avoided; however, the current study aims to explore the process behind how individuals become open to death communication. 2.6 The Death Positive Movement Some argue that death has replaced the taboo around sex which was dispelled as a consequence of the sixties sexual revolution (Gorer, 1965). However, it could be argued that with the increasing popularity of such initiatives as the Death Café, the Order of the Good Death and Death Over Dinner, a new type of death revolution is occurring, the death positive movement. In recent years there has been a surge of formal and social death awareness and education initiatives (e.g., Dying Matters, Order of the Good Death, Death Café and Death Over Dinner) (Koksvik & Richards, 2021). As stated in chapter one, such initiatives are at the forefront of what is known as the death positive movement (Melzer, 2018). The death positive movement is the newest development of the death awareness movement that has been ongoing for over fifty years (Koksvik & Richards, 2021). The movement began in the seventies with the popularisation of death through the academic work of Kübler-Ross (1969) and Mitford (1963). In 2011, several new death-related initiatives were developed (i.e., Death Café, Order of the Good Death). These initiatives collectively help form the death-positive movement (Order of the Good Death, 2023). One initiative that contributed to the success of the death-positive movement is Death Café. Death Café was developed by Jon Underwood in London in 2011 after being inspired by the ideas of Swiss sociologist and ethnologist Bernard Crettaz (Death Café, 2023). Bernard Crettaz developed and organised around forty “Café Mortels” in Switzerland from 2004 to 2011 (Richards et al., 2020). Crettaz’s “Café Mortel” format involved meeting in a café to discuss death-related issues (Guinness, 2010). Underwood went on to develop Crettaz’s concept of the “Café Mortel”, which resulted in the creation of Death Café. Death Café is a non-profit organisation aimed at encouraging death awareness (Death Café, 2019). Death Cafés encourage individuals to gather to engage in private group-directed discussions around death and dying (Death Café, 2019). The informal conversational format of such events provides individuals with a safe space to explore the subject of death. Such methods move beyond educational resources and passive interaction to allow individuals to actively and reflectively consider how they want to spend their finite time and what they want for their end-of-life care. As of July 5th, 2023, there have been 16,288 Death Cafés in 85 countries (Death Café, 2023). 73 The term ‘death positivity’ was first popularised and coined by mortician Caitlin Doughty in 2011 (End with Care, 2022). Doughty observed firsthand how the funeral industry failed its clients both emotionally and financially. After this realisation, Doughty set out to revolutionise the funeral industry and change what was possible at the end of life by creating the Order of the Good Death. In doing so, she assembled a community of academics, artists and funeral industry professionals who shared the same ambition to change public attitudes towards death and dying (Order of the Good Death, 2023). In the years since, this community expanded into what is now known as the death-positive movement. The overall aim of the death-positive movement is to remove the stigma around death-related discussions by encouraging individuals to acknowledge death as a natural part of life (Incorvaia, 2022). Both the death positive and awareness movements are positioned around the notion that late modern societies see death as a taboo. This notion asserts that the death taboo harms our well-being; therefore, advocates for the death positive movement contend that actively thinking and openly talking about mortality can have substantial benefits for everyone and, therefore, should be encouraged (Koksvik & Richards, 2021). Recent research suggests that these grassroots initiatives, such as the ones mentioned above, are helpful tools in encouraging individuals to actively think and openly talk about death and dying (Baldwin, 2017; Lambert et al., 2017; Mroz et al., 2022). For example, studies have shown that such events can help encourage individuals to talk about end-of-life planning, both within and outside of the event (Lambert et al., 2017; Mroz et al., 2022; Lambert South & Elton, 2017). Similarly, studies have indicated that such initiatives can reduce reservations about advance care planning and encourage young adults to engage in conversations around end-of-life care (Mroz et al., 2022). Research suggests that a lack of knowledge about end-of-life options can be a significant barrier to effective end-of-life care (Bernard et al., 2020; Jeong et al., 2015; Marie Curie, 2021; McIlfatrick et al., 2021; Reigada et al., 2021; Schickedanz et al., 2009; Stone et al., 2013; The Academy of Medical Science and Ipsos Mori, 2019). However, Death Cafés can provide and signpost people to resources and information on end-of-life care options; therefore, such initiatives could be useful in helping individuals overcome this barrier. The rise in popularity of such initiatives could indicate a shift in people’s openness towards death (Brooks, 2020). As the research cited above indicates, death positive initiatives and events are useful in encouraging individuals to engage in death-related discussions. These initiatives encourage conversations around death more broadly; however, as demonstrated, such conversations can lead 74 to discussions around end-of-life planning. Therefore, there is value in considering how death-related conversations broadly can be encouraged within the general population. As I have demonstrated, exploring how individuals become open to thinking and talking about death and dying is worthy of further empirical enquiry. As cited above, there are many benefits to actively thinking and openly talking about death and dying; however, previous research has mainly focused on encouraging openness with those that are elderly or terminally ill within an end-of-life context (Amjad et al., 2014; Bernard et al., 2020; Glaudemans et al., 2020; Im et al., 2019; Klemmt et al., 2020; Peterson et al., 2018; Stone et al., 2013); therefore, this study aimed to explore the process behind how individuals become open to death communication more generally regardless of health and age. 2.7 Research Aims and Objectives 2.7.1 Study Rationale The purpose of this research was to explore how people begin to become open to thinking and talking about death and dying. Death, dying and bereavement are unavoidable experiences that will impact everyone; however, research suggests that people in the UK find conversations around death and dying difficult to facilitate (Co-Op, 2018; Biscuit Tin, 2021; The Academy of Medical Science and Ipsos Mori, 2019; Sue Ryder, 2019). Little research has examined how individuals begin to start actively thinking and openly talking about death and dying. Most research has come from a sociological perspective exploring whether society has formed a death-denying culture (Kellehear, 1984; Walter, 1992). Similarly, psychological studies of attitudes towards death and dying have mainly focused on an individual’s fear of death (Depaola et al., 2003; Iverach & Menzies, 2012; Krause & Hayward, 2014; Sinoff, 2017). Within psychology, in 2004, Neimeyer et al. identified that there were approximately 2,000 quantitative studies on the fear of death (Neimeyer et al., 2004). A quantitative approach may be useful in estimating the prevalence of fear of death or examining the factors contributing to a person’s fear of death; however, it fails to underpin why those factors are feared. Unlike quantitative methods, qualitative research enables the researcher to uncover the meanings and behaviours behind people’s responses (Madrigal & McCain, 2012). Even though the modern world may favour verifiable facts and statistics, the importance of human experience cannot be overlooked (Madrigal & McCain, 2012). A person’s experiences contribute to their different perspectives on death and dying, and as a result of these complexities, employing a qualitative research method can produce more in-depth and detailed conclusions. 75 My grounded theory study is believed to be the first study to explore the process behind how individuals begin to actively think and openly talk about death and dying in the UK regardless of health status and age. Only in the last three years has there been an increasing amount of interest in research focusing on facilitating death-related conversations within the UK general public (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Wilson et al., 2022). As stated in section 1.2, previous research has mainly focused on encouraging openness with those that are elderly or terminally ill within an end-of-life context (previous research has mainly focused on encouraging openness with those that are elderly or terminally ill within an end-of-life context (Amjad et al., 2014; Bernard et al., 2020; Glaudemans et al., 2020; Im et al., 2019; Klemmt et al., 2020; Peterson et al., 2018; Stone et al., 2013); therefore, there is a need to explore how openness can be achieved by within the general population. Current policy (Department of Health, 2008) and evidence (Llewellyn et al., 2016; MacKenzie & Lasota, 2020; Seymour et al., 2010) suggest the need for a national approach to addressing the existing barriers to death communication to help individuals feel more open to discussing death-related issues. Addressing such issues from a public health perspective could increase awareness and understanding of end-of-life issues. Although there is increasing evidence for the positive impact of public health approaches to end-of-life care (Sallnow et al., 2016), further research needs to be conducted to inform such interventions on how to promote early engagement within the general public (Graham-Wisener et al., 2022). An exploratory study into the process behind openness to death communication could help develop recommendations for such initiatives, address low levels of awareness of palliative and end-of-life care and address existing societal taboos around death-related discussions, thus empowering individuals to feel more comfortable discussing such issues. As stated in section 2.3, research suggests that a community approach is required in order to access all those in need of palliative care (Sallnow et al., 2016; Stjernswärd, 2007); however, there is a lack of research on implementing and evaluating community-led initiatives (Librada-Flores et al., 2020). Therefore, exploring the process behind becoming open to death communication would provide a theoretically informed understanding of the processes behind this behaviour change which would help inform community engagement programmes such as the Compassionate Communities initiative. In addition, as stated in section 1.4, death communication interventions that promote death-related discussions could be a useful public health strategy to promote openness within the general population; therefore, exploring how openness towards death communication is achieved could help inform the development of such interventions. 76 Advance care planning is not a one-time conversation, it involves an ongoing process of reviewing and modifying preferences (Fried et al., 2017); thus, involving a continuous dialogue between family members and healthcare providers. Most advance care planning approaches are targeted at individuals instead of viewing ACP as a social process involving lifelong communication. However, focusing on the social aspects of ACP, such as how individuals become open to initiating and partaking in such conversations, could suggest ways to encourage readiness to engage in discussions around ACP. Furthermore, current policy indicates that encouraging death-related conversations among the general public will increase readiness to engage in advance care planning (Department of Health, 2008). Therefore, an exploratory study into the process behind how individuals become open to death communication could help improve end-of-life care and inform policy on encouraging pre-emptive death-related discussions, thus, resulting in more end-of-life planning and preparedness. According to a survey conducted by Macmillan Cancer Support (2017), 64% of people with cancer in the UK wish to die at home; however, only 30% of people do so. This may indicate that unfulfilled wishes may in part be being unable to tell loved ones of these intentions. Death is certain; however, what is less certain is the nature of our dying. Exploring how individuals become open to thinking and talking about death and dying could help to initiate conversations around practically planning for death. For example, by thinking about death and dying, people can reflect on what is important to them, make more informed decisions about end-of-life care, and plan for its inevitability. Similarly, exploring how people become open to thinking and talking about death and dying could help practitioners to broach death-related conversations with patients. If conversations around death and dying became more commonplace, practitioners could be more direct with patients and their families about end-of-life care and wishes. Individuals have many fears about death and dying, and there needs to be an open line of communication between practitioners, patients and their families to alleviate these fears. Therefore, exploring how individuals become open to thinking and talking about death and dying could open that line of communication which would enable people to make more informed choices and, therefore, feel more in control of their end-of-life care. Talking about these wishes with loved ones can give individuals peace of mind and allow others to take care of them in accordance with their wishes. Research also suggests that letting loved ones know about end-of-life wishes can reduce depression, anxiety and posttraumatic stress in surviving family members (Detering et al., 2010). In addition, informing loved ones of how the individual wants their life to be celebrated and remembered can prevent regret and disagreements among family members at a time when they are in mourning and in need of social support. 77 Most health research has focused on the barriers preventing death-related conversations (See Table 2 for further details). Although it is important to explore these barriers, especially within an end-of-life setting, it is equally beneficial to explore how individuals become open to these types of conversations in the first place. Exploring how individuals become open to thinking and talking about death and dying can suggest ways in which the identified barriers could be overcome. In addition, exploring this topic could also inform how openness is reached before these barriers arise. As stated in section 1.3, the most frequently discussed facilitator was death-related experiences (Amjad et al., 2014; Banner et al., 2019; Fleming et al., 2016; Fried et al., 2017; Glaudemans et al., 2020; McIlfatrick et al., 2021; Peterson et al., 2018; Reigada et al., 2021; Sanders et al., 2019; Stone et al., 2013; Wilson et al., 2022); therefore, further research is needed to explore how openness to death communication can be encouraged regardless of prior exposure to death. Most research on facilitating death-related conversations has been around individuals at the end-of-life (Bachner et al., 2014; Carmel et al., 2020; Im et al., 2019), mainly focusing on the barriers to engaging in ACP behaviours (Banner et al. (2019; Betker et al., 2021; Bernard et al., 2020; Boerner et al., 2021; Fleming et al., 2016; Fried et al., 2017; Glaudemans et al., 2020; Jeong et al., 2015; Klemmt et al., 2020; McIlfatrick et al., 2021; Peterson et al., 2018; Reich et al., 2022; Sanders et al., 2019; Stone et al., 2013; de Vries et al., 2019). However, it is not just about end-of-life care, everyone will go through a bereavement at some point in their lives and being able to talk about death and dying could help with bereavement support. Talking about the death of a loved one is important for the bereavement process (Jakoby, 2014). The value of engaging in death-related discussions as part of the bereavement process lies in the opportunity to share memories, verbalise feelings and acquire different perspectives (Jakoby, 2014). Additionally, talking about the bereavement also enables individuals to make sense of their experiences by “social sharing of their stories” (Jakoby, 2014). There are up to 600,000 deaths per year in the UK (ONS, 2021), with 72% of adults reporting a bereavement in the last five years (Sue Ryder, 2019); everyone is likely to have been affected personally by death or know someone that has been affected. Despite the high prevalence of bereavement experiences, a study commissioned by The Dying Matters Coalition (2014) revealed that 47% of people living in the UK were uncomfortable speaking to someone that has been recently bereaved. This is unfortunate since 70% of people who have been recently bereaved suggest that talking about the death has helped them with the grieving process (Dying Matters, 2014). Similarly, a survey conducted by Together for Short Lives (2019) revealed that one in three people in the UK knows someone caring for a terminally ill child; however, they are too uncomfortable to talk to them about it. This study suggests that people are likely being avoided or their needs are being left 78 unaddressed at a time when they are more likely to need support than ever. In addition, friends and family who feel unable to talk about death and dying might feel guilty or other forms of discomfort for not offering this support. Thus, being able to have these conversations would also be of benefit to them. Therefore, by identifying how individuals become open to thinking and talking about death and dying, we can begin to normalise death-related conversations so that people can receive the support needed after a bereavement to help themselves and those around them. 2.7.2 Research Aims Research Aims: ● To explore actively thinking and openly talking about death and dying from the perspective of participants ● To develop a substantive theory that explores the process behind how individuals begin to actively think and openly talk about death and dying 2.7.3 Research Objectives Research Objectives: • To critically review the literature on death and dying (the initial literature review) • To critically analyse the interview and written data of approximately thirty participants on the topic of death and dying. • To explore the process by which individuals begin to actively think and openly talk about death and dying • To critically review the literature on death and dying in relation to the findings (the literature review) • To use theoretical sampling to identify participants based on the data analysed from the initial sample. • To use constructivist grounded theory to develop a substantive theory that explains the results. 79 Chapter Three: Methodology 3.1 Introduction This chapter outlines the philosophical underpinnings of this research. I will present my ontological perspective of how I view social reality (what existence is, what knowledge is, what the reality is) and my epistemological view, my view of how knowledge can be gained (how to access that knowledge, what methods are needed to better understand my research topic). I will justify my choices and provide a rationale for using qualitative methods. In addition, I will also explain the different approaches to grounded theory, examining their similarities and differences. Following this, the reasons for choosing constructivist grounded theory are presented. 3.2 Ontology A researcher’s ontological and epistemological assumptions are intrinsically connected. A researcher’s ontological assumptions, how they view reality, influence their epistemological assumptions, how we can access that knowledge, which informs their research methods (Al-Saadi, 2014). This study explores how individuals became open to thinking and talking about death and dying in order to explore this issue, the philosophical underpinnings of the research must be considered. Ontologically, I take an interpretivist-constructivist position that reality is socially constructed. I, therefore, reject the positivist position that the world can be understood objectively. Instead, I believe that there is no single reality or truth, and that reality is created by individuals. Two opposing ontological positions are positivism and constructivism. Constructivism views reality as multiple and socially constructed (Charmaz, 2014). A constructivist perspective rejects the idea of a single observable known reality and believes that that the goal of the researcher is to understand the multiple social constructions of meaning and knowledge (Charmaz, 2014). Unlike constructivists, positivists hold the belief that there is a single, orderly, external reality that can be objectively observed (Charmaz, 2014). Below I have described these two opposing ontological positions and justified the philosophical underpinnings of this research. Positivism developed towards the end of the nineteenth century and has been attributed to the philosophical thinking of Comte (Ryan, 2018). Researchers that take a positivist stance believe that because the world is seen as an independent object, knowledge about the world can be discovered. Therefore, knowledge about the world can be equally accessed by researchers and independently verified. Positivism proposes that “discovered knowledge” is absolute and value-free (Scotland, 2012). Unlike constructivists, positivists believe that different people have the same relation to an 80 object; therefore, we make similar observations about that object. This view holds that our observations about the world are not biased by our beliefs, views, individual experiences or context in which these observations are embedded. Therefore, if something is claimed to be “real,” this should be able to be objectively observed, without bias, independently by others (Ryan, 2018). Consequently, positivists employ a deductive methodology that maintains distance between the researcher and the participants. Contrastingly, a constructivist approach sees reality as multiple and socially constructed (Charmaz, 2014). Ontologically, I take an interpretivist-constructivist position that reality is multiple and socially constructed. An interpretivist-constructivist approach aims to understand human experience by acknowledging that there are multiple realities with individual perspectives (Charmaz, 2014). This ontological position argues that reality is made by people in social ways and is, therefore, a product of social understanding. Unlike positivists, constructivists reject the notion that there is an objective world waiting to be discovered; instead, constructivists believe that knowledge about the world is subjective. For example, everybody has their own perspectives, views and beliefs (how I define something may be different from how you define something); therefore, it is impossible to know the feelings, thoughts and social processes that individuals go through objectively. Since reality is socially constructed, there can be multiple constructions of a certain phenomenon, some of which may conflict with each other (Charmaz, 2014). This ontological stance holds the view that the “fluid” nature of these multiple constructed realities means that people’s perceptions of reality may change over time (Charmaz, 2014). The meanings that individuals attach to their experiences are tied to culture, context and time; therefore, this ontological position does not attempt to generalise to a larger population (Charmaz, 2014). We are all different and will therefore attach different meanings to different experiences. This ontological position holds that different interpretations of a certain phenomenon are equally valid and are, therefore, not outside the realm of scientific enquiry (Crotty, 1998). I believe that understanding human experience from those who have lived it is just as important as focusing on prediction and explanation. My ontological stance that reality is not something that can be discovered but rather something that individuals construct is particularly relevant when studying death and dying. Death and dying are experiences that are intensely personal and inherently social. Our views, feelings and interpretations of death will differ depending on our experiences; therefore, these subjectivities must be explored. 81 3.3 Epistemology Epistemology is defined as the philosophical study of knowledge (e.g., what is knowledge and what methods can be used to access it?) (Scotland, 2012). The kind of knowledge that I sought to better understand my research topic was affected by my ontological belief that individuals construct meaning within their social settings; therefore, my ontological beliefs influenced my epistemology. This study aimed to search for meaning rather than facts. Unlike physical objects, human behaviour cannot be predicted; therefore, the same scientific paradigm used to study physical objects cannot be used to study individuals. As I take an interpretivist-constructivist position, I wanted to understand this phenomenon through those who experience it. I wanted to understand how individuals interpreted their lives rather than acquiring knowledge about what can be known in a factual sense. This led me to look at the first-hand experiences of participants in order to collect meaningful data. Interpretive qualitative methods enable the researcher to enter a participant's "world" (Charmaz, 2014). As this study aimed to look for interpretive meaning, a qualitative methodology was employed. A qualitative approach attempts to understand how individuals make sense of their lived experiences. Unlike quantitative methods that seek to discover objective facts about a studied phenomenon, the inductive nature of qualitative research allows the researcher to explore participants' lived experiences whilst focusing on the meanings that participants attach to their experiences (Charmaz, 2014). Through this, the researcher can explore how and why participants construct meaning and actions in certain situations (Charmaz, 2014). Therefore, this study used qualitative methods to gain direct access to how participants make sense of the world around them, (e.g., through interviews and written accounts). The use of qualitative data allowed me to gain a contextual understanding of how people became open to thinking and talking about death and dying. In addition, a qualitative methodology considers the role of the researcher and highlights the importance of reflexivity. An interpretivist approach relies on participants' views of the studied phenomena and recognises the impact the researcher can have on the emerging analysis (Charmaz, 2014). This approach rejects the notion of an independent objective researcher and acknowledges that the research cannot be independent of the researcher's values (Charmaz, 2014). The researcher not only interacts with participants but also with the data and emerging analysis. This enables the researcher to delve into why participants constructed meanings and actions in certain situations whilst being mindful that the resulting theory is an interpretation dependent on the researcher's point of view. It is by uncovering these meanings via data collection and analysis that new 82 knowledge can be constructed (Charmaz, 2014). Therefore, I reject the belief that the researcher is an objective observer and support the idea that the subsequent theory is a co-construction between participants and the researcher. For the reasons stated above, this study employed a constructivist ontology and interpretivist epistemology. By adopting a constructivist paradigm, I was able to gain access to the thoughts, intentions and actions of those that participated, thus, developing a deeper understanding of how individuals became open to thinking and talking about death and dying. 3.4 The History and Development of Grounded Theory The methodological approach adopted for this study was grounded theory. Grounded theory was first developed and proposed by Glaser and Strauss (1967) and has since become an enduringly popular research method for qualitative analysis. Both grounded theory and the sociological study of death made their simultaneous debut in 1965 with Glaser and Strauss's book 'Awareness of Dying'. In the study, Glaser and Strauss examined how medical staff approached death with their terminally ill patients (Glaser & Strauss, 1965). It was through this collaboration that the scientific method of verification came into question (Tie, Birks & Francis, 2019). While conducting the research, Glaser and Strauss developed the constant comparative method, a key component of all grounded theory studies. The study developed theory by comparing and conducting case studies rather than using theory as a starting point (Glaser & Strauss, 1965). Using a systematic inductive method ensured that the developing theory was "grounded" in the data instead of empirically testing existing theories. This led Glaser and Strauss to write their seminal book 'The Discovery of Grounded Theory' (1967) which explains how theory can be produced from data inductively. Grounded theory came about as a critique of quantitative hypothesis-driven research. At the time, this challenged the traditional method of refining or testing theory through deductive testing (Tie, Birks & Francis, 2019). Glaser and Strauss's work challenged the belief that qualitative methods lacked rigour and questioned the view that quantitative research is the only unbiased, valid way to determine truths about the world (Bryant & Charmaz, 2007). Glaser and Strauss's revolutionary work demonstrated how qualitative enquiry could move beyond description to explanatory theoretical frameworks that provided a conceptual understanding of the phenomena in question. Glaser and Strauss went on to develop their own grounded theory approaches. Glaser (1978) published his book 'Theoretical Sensitivity', and Strauss (1990) went on to publish 'Qualitative Research: Grounded Theory Procedures and Techniques' with Juliet Corbin, both expressing 83 different perspectives on the use of grounded theory methods. The subsequent grounded theory approaches proposed by Glaser and Strauss will be referred to as Glasser's classical grounded theory and Strauss's evolved grounded theory. Glaser's classical grounded theory maintains a strong link to the positivist ontology of traditional grounded theory (Glaser 1978, 1992, 2009, 2011). Glaser upheld the idea of an impartial, neutral researcher, which seeks to discover knowledge of an external objective reality. Contrastingly, Strauss's evolved grounded theory incorporates the methodological strategies of traditional grounded theory but changes its ontological perspective to allow for the acceptance of multiple realities (Corbin & Strauss, 2015; Strauss, 1987). Furthermore, Strauss and Corbin (1990) modified the systematic methodological strategies developed in traditional grounded theory to provide a step-by-step guide to conducting grounded theory research. This was challenged by Glaser (1992), who argued that their approach was not true grounded theory but instead conceptual description. Philosophical perspectives have shifted since Strauss and Corbin's post-positivism version of grounded theory and Glaser's positivist approach (Charmaz, 2011), resulting in the development of several different grounded theory approaches (Ralph, Birks & Chapman, 2015; Wuest, 1995; Bowers & Schatzman, 2009; Clarke, 2009). Some view the evolution of grounded theory as the "natural maturing of a methodology" (Rieger, 2019). Traditional grounded theory developed within a positivist/postpositivist perspective; therefore, some argue it needed to move towards a constructivist paradigm (Rieger, 2019; Mills, Bonner, & Francis, 2006; Charmaz, 2006). Although the philosophical underpinnings of grounded theory approaches differ, there are some fundamental components of all grounded theory studies. These include simultaneous data collection and analysis, constant comparative method, memo writing, theoretical sampling and creating a theory grounded in the data. However, despite the commonalities, there are distinguishing characteristics between these approaches. These include philosophical perspective, the role of the researcher, the use of the literature review and approaches to coding. Below I have outlined the key differences among the most widely used and developed grounded theory approaches; traditional grounded theory (Glaser & Strauss, 1967), evolved grounded theory (Strauss & Corbin, 1990) and constructivist grounded theory (Charmaz, 2014). 84 Table 3 - Key Differences among the Most Widely Used and Developed Grounded Theory Approaches Positivist Paradigm (Glaser and Strauss’s Traditional GT) Postpositivist Paradigm (Strauss and Corbin’s Evolved GT) Constructivist Paradigm (Charmaz’s Constructivist GT) • Assumes there is an orderly reality that can be objectively observed. • The researcher must remain neutral • Knowledge can be independent from the researcher. • The literature review should “lie fallow” until after data analysis. • Coding – substantive coding and theoretical coding • Although Strauss and Corbin reject the notion of a “pre-existing reality,” their work is ambiguous and contains conflicting opinions about the ontological nature of their work. Strauss and Corbin’s work does not address the philosophical underpinnings of their method. They use a mixture of language that fluctuates between post-positivism and constructivism. Such as ‘recognising bias’ and ‘remaining objective’ however, they also note that “it is not possible to be completely free of bias” (Mills, Bonner, & Francis, 2006). Therefore, some argue that researchers can find support for any ontological position they choose. • The researcher actively interprets the data • Prior knowledge can be used to encourage theoretical sensitivity • The literature review can be conducted prior to data collection. • Coding – open coding, axial coding and selective coding • Assumes that social reality is multiple and cannot be objectively discovered • People, including researchers, construct the realities in which they participate • The researcher is not a “tabula rasa.” Instead, prior knowledge should be examined through reflexivity. • Instead of postponing the literature review, the researcher should engage in a preliminary literature review to establish significant theories and studies related to the research topic. This enables the researcher to identify which areas to research and what methodology should be used as well as satisfying the requirements of research institutions. • Coding – initial coding and focused coding 3.4.1 Constructivist Grounded Theory (CGT) Building on this work (Glaser & Strauss, 1967; Strauss & Corbin, 1990), Charmaz (2014) developed constructivist grounded theory (CGT). Charmaz (2014) attempted to address the “objectivist” nature of original grounded theory, which aims to discover an objective reality separate from social actors. Constructivist grounded theory incorporates the methodological strategies of traditional grounded theory but changes its epistemological perspective and incorporates recent qualitative methodological developments such as reflexivity and co-construction of data. Constructivist grounded theory opposes Glaser and Strauss’s positivistic assumptions and brings subjectivities into consideration (Belgrave & Charmaz, 2014). Therefore, unlike earlier versions of grounded theory, CGT enables the researcher to go deeper into participants’ meanings of a particular experience and recognises the researcher’s role in interpreting and representing these meanings (Belgrave & Charmaz, 2014). This approach emphasises the interactive nature of the method. The researcher interacts with not just the participants but also the data and emerging analysis. Charmaz and Belgrave (2014) suggest that these interactions are especially important when researching topics 85 such as death and dying as it is these interactions that “give substance and form” to the interpretive analysis (Belgrave & Charmaz, 2014). Constructivist grounded theory sees reality as multiple and constructed. The researcher’s perspective, interactions and position are considered within the research process and contribute to its construction (Belgrave & Charmaz, 2014). Charmaz emphasises that qualitative research relies on the interpretations of the researcher. Researchers are not scientific observers who can claim “scientific neutrality” by dismissing their values and beliefs. Both the researcher and the participant are affected by and make assumptions about the world. Therefore, researchers need to be reflexive about what they see and how they see it. This contrasts with earlier approaches to grounded theory that viewed researchers as neutral observers without preconceived ideas and biases about the research topic. Charmaz (2014) suggests that taking this position ignores assumptions about the world and the research topic. Therefore, CGT questions the concepts of objectivity, discovery and generalisations separate from place, time and social conditions present in earlier versions of grounded theory. Constructivist grounded theory rejects the idea that theory can be discovered and instead suggests that theory is constructed by the researcher via their perspectives, interactions, and research practices. Therefore, Charmaz (2014) acknowledges that the resulting theory is just one possibility of the multiple constructions of reality. Rejecting the notion of a fixed external reality, it is unsurprising that Charmaz rejects earlier versions of grounded theory that offer fixed procedures for collecting and analysing data. Instead, a constructivist grounded theory approach offers systematic yet flexible guidelines for developing theory. The researcher can adjust these guidelines throughout the research process as the study evolves. Constructivist grounded theory draws on the theoretical perspective of symbolic interactionism. Symbolic interactionism follows a subjectivist ontology and interpretivist epistemology. Symbolic interactionism was first proposed by George Herbert Mead (1934) and later developed by Herbert Bloomer (1969), who coined the term symbolic interactionism. This perspective views actions as constructing self, society and situation and assumes that our meanings and actions are formed by language and symbols. This view acknowledges that people act in response to how they view their situations. Therefore, both our actions and the actions of others affect these situations, which can affect our interpretation of what could, is, or will be taking place. From a symbolic interactionist perspective, all meaning is socially constructed. Knowledge about death and dying is influenced by sociocultural processes which help to determine the meaning of death (Neimeyer, 2001; Rosenblatt, 2008). Therefore, a symbolic interactionist perspective is appropriate for this study as it emphasises how individuals influence, and are influenced by, social 86 norms around death and dying. Our perceptions and experiences of death and dying are deeply personal and fundamentally social. Therefore, a symbolic interactionist perspective is helpful when attempting to understand this contradiction. Additionally, a symbolic interactionist perspective emphasises temporality, which is particularly crucial to my research as past, present and potential future experiences of death can change our perceptions of it. This study seeks to explore the lived experiences of individuals; however, death and dying take place within a cultural context, and symbolic interactionism takes this into account. Through a symbolic interactionist perspective, I can learn what these experiences mean to participants, how their experiences and meanings changed and how, why and when they changed. Therefore, symbolic interactionism and constructivist grounded theory were deemed the most suitable approach to explore this topic. 3.5 Methodological Choice: Constructivist Grounded Theory This study employed a constructivist grounded theory methodology. Constructivist grounded theory agrees with my ontological position that reality is seen as multiple and constructed. A constructivist approach does not perceive reality as a "real" world waiting to be discovered but rather aims to find out what individuals define as real through their words and actions. This worldview gives attention to these subjectivities and how different people may interpret different things around them. Constructivist grounded theory is especially useful when exploring subjects such as death and dying, as it emphasises the importance of individual perspectives. Our individual perspectives of death and dying will differ depending on our experiences and cultural, religious and spiritual beliefs. Therefore, a constructivist approach to grounded theory starts with participants lived experiences and then asks how participants constructed that experience. Additionally, a CGT methodology was chosen for this study as, in contrast to other grounded theory approaches, a constructivist approach prioritises the studied phenomenon over the methods of studying it. Constructivist grounded theory uses grounded theory strategies as tools rather than as prescriptions allowing new methods to be used as the study progresses. Charmaz and Belgrave (2014) suggested that CGT is particularly useful when studying death and dying as it enables the researcher to delve deeper into participants' experiences of death and dying and the meanings that participants attach to these experiences. Grounded theory's (GT) focus on meaning-making is particularly useful for this study as openness towards death is bound up in meaning-making about mortality. Furthermore, a constructivist grounded theory methodology allows for multiple constructions of a certain phenomenon. Attitudes and perceptions towards death vary from person to person and may change across an individual’s lifetime. As death and dying are 87 complex; a CGT approach is advantageous as it includes variation rather than assuming a one size fits all answer to the research question. A constructivist grounded theory methodology relies on interpretation. This methodological approach not only interprets and theorises from the data shared by participants but also acknowledges that the emerging theory is also an interpretation (Charmaz, 2014). The emerging theory depends on the researcher's view and cannot exist outside of it. The subsequent theory is not the result of a removed researcher but instead results from the researcher's commitment to analysing what they observe in the data. Therefore, a CGT approach takes into account my epistemological position that meaningful qualitative research should consider the role of the researcher in the co-construction of knowledge. A GT methodology does not attempt to empirically verify existing theories but instead starts with a topic and allows theoretical concepts to emerge from data collection and analysis. Therefore, grounded theory is useful in explaining social processes that have had little prior research attention as it seeks to construct a theory that is "grounded in the data" (Charmaz, 2014). Little research has been conducted from the perspective of individuals on how openness towards death and dying can be reached; therefore, grounded theory is the most appropriate method for finding yet undiscovered information about the process behind how people begin to actively think and openly talk about death and dying (Walker, 2015). Additionally, constructivist grounded theory is useful when studying topics that are sensitive or difficult to discuss, such as death and dying, as it is very participant-led. This bottom-up approach allows theory to be developed from the perspectives of the participants (Birks & Mills, 2015). Through interviews, issues around death and dying from the perspective of participants can be explored and analysed. As a result, interviews are led by the concerns of participants and follow-up interviews can be used to explore these concerns in further detail. This will provide a deeper understanding of how individuals begin to actively think and openly talk about death and dying. 88 Chapter Four: Methods 4.1 Introduction Chapter Four is structured according to the three phases employed within this grounded theory study (i.e., Initial sampling, Theoretical sampling (Stage One) and Theoretical sampling (Stage Two)). The chapter starts with an overview of the research participants. I will then discuss the study's design, including sample and recruitment, ethical considerations and data collection in relation to the three phases cited above. Reflexivity and data analysis will be discussed in relation to the study as a whole. A constructivist grounded theory method was employed to analyse the data of forty participants. Grounded theory methods consist of systematic, yet flexible guidelines for collecting and analysing data (Charmaz, 2014). Data analysis started after the first interview. Data was simultaneously collected and analysed until theoretical saturation was reached (this will be further explained in section 4.7). 4.2 Summary of Research Participants Forty participants agreed to take part in this study. Sixteen participants were in the initial sample, and twenty-four participants were part of theoretical sampling (see Table 4 for further details). Table 4 - Number of Participants Recruited in the Initial and Theoretical Samples The sample consisted of twelve male participants and twenty-eight female participants, ranging in age from 25 to 86, with a mean age of 53. Participants held a wide range of religious beliefs, from Christianity to Heathenism and came from a variety of occupations. Background information on all participants can be seen in Appendix 1. There were no age, gender or ethnicity limitations during the recruitment process. It was held that there were no right or wrong participants to recruit for this Sampling Number of Participants Initial Sample N = 16 Theoretical Sampling (Stage One) N = 15 Theoretical Sampling (Stage Two) N = 9 89 study, as every participant could provide rich data about how they became open to thinking and talking about death and dying. 4.3 The Initial Sample Section 4.3 will describe the methods and procedures for the first stage of this study (the initial sample). The recruitment process will be described along with the data collection methods employed in this study (semi-structured interviews). Following this, the ethical approval process is presented. 4.3.1 The Sample Sixteen participants were recruited for the initial sample. The research question determined the sample for this study. In a grounded theory study, no fixed number of participants is sought after. Instead, the sample size depends on theoretical saturation (Charmaz, 2014). As this study used a qualitative methodology, a large sample size was not required. However, this study received a good response, with forty participants agreeing to participate overall. The sample sought to provide in-depth qualitative answers to my research question, which explored how people began to actively think and openly talk about death and dying. Therefore, sampling was geared towards theory construction rather than population representativeness (Charmaz, 2014). A defining characteristic of a grounded theory study is the use of theoretical sampling; however, before theoretical sampling can begin, researchers must first purposefully collect and analyse the data of the initial sample. The inclusion criteria for the initial sample were deliberately broad to include all individuals open to thinking and talking about death and dying. This provided for a broad range of experiences that allowed flexibility for different types of individuals to take part as the study evolved. See Table 5 for further details on the inclusion and exclusion criteria chosen for the initial sample. 90 Table 5 - Inclusion and Exclusion Criteria for the Initial Sample Initial Sample Criteria Details Rationale Inclusion Criteria • Participants must be open to thinking and talking about death and dying • Inclusion criteria were deliberately broad to allow for a range of experiences/individuals to take part. In a grounded theory study, it is important that the initial sample is as broad as possible in order to explore all possible processes present in the phenomena being studied. • Focusing on both thinking and talking – it is important to look at both thinking and talking about death and dying because individuals must have first thought about death in order to be able to talk about it. Thinking about it enables us to talk about it and talking about it can change how we think about it. • Little research has been conducted on people’s openness towards thinking and talking about death and dying (most research has focused on the barriers preventing death-related conversations, instead of how that openness can be reached). • Previous research has mostly focused on individuals that are already facing death. This study aims to add to the body of literature by looking at openness in general. • Openness towards thinking and talking about death includes thinking and talking about dying. Conversations around death are heavily wrapped up in conversations around dying, therefore, it’s important to examine openness towards both death and dying. Exclusion Criteria • Individuals living outside of the UK • This study aimed to look at openness towards death and dying within the UK. 4.3.2 Recruitment This study originally aimed to recruit the initial sample from a local death-positive festival in Todmorden, West Yorkshire (Pushing Up Daises). This approach was chosen to gain interest from individuals that were already open to thinking and talking about death and dying. However, I did not receive full ethical approvable until a few days before the festival, so I could not advertise the study before the festival took place. I did still attend the festival, and whilst there, a potential participant overheard me talking about the study and agreed to take part. Most participants were recruited via social media (Facebook/Twitter). Initially, a Facebook post and recruitment tweet was sent from my personal account and that of my supervisory team. The Facebook post and recruitment tweet included a brief description of the study and a link to a WordPress site which contained the following details: • Study information sheet • Background to my master’s research • My contact details 91 Link to the blog: https://deathresearch436794189.wordpress.com Using the WordPress site was helpful as it ensured that participants fully understood what the research was about and could decide in their own time whether it was something they would be interested in participating in. Using social media as a recruitment tool encouraged a further fifteen participants to participate in the study. Figure 2 depicts the recruitment process for the initial sample. Figure 2 – Recruitment Process (Initial Sample) 92 Although there are many advantages to recruiting via social media, it is also important to acknowledge its disadvantages. Below I have outlined the advantages and disadvantages of internet-based recruitment strategies and justified my choice. Table 6 - Advantages and Disadvantages of Internet-based Recruitment Strategies 4.3.3 Data Collection In this section, I will describe the data collection process for the initial sample stage. It is important to note that in a grounded theory study, data collection and analysis happen simultaneously and, therefore, do not follow a linear process. The data was integral to the resulting grounded theory, which provides an interpretive explanation of how individuals became open to thinking and talking about death and dying (Charmaz, 2014). In order to produce in-depth, descriptive first-person Advantages • Cost effective • Allows for a larger and potentially more diverse sample • Enables the researcher to target a specific sample/population • Greater, more convenient access to information • Convenient form of communication (for both the researcher and participant) • Enables the study to be widely seen (retweets and reposts) Disadvantages • Can create potential biases – research suggests that social media-based recruitment strategies can lead to an over-representation of white, young participants with a higher education and income (Benedict et al., 2019; Whitaker, Stevelink & Fear, 2017; Topolovec-Vranic & Natarajan, 2016) • Internet-based recruitment strategies cannot reach populations without access to the internet (the elderly and economically disadvantaged). Justification • Allowed participants to access the study information at any point (information could be accessed at the convenience of the potential participant) • Participants were able to ask direct questions before deciding to take part (eligibility/what was required) • I was able to respond quickly to any questions/concerns of potential participants, therefore, it was less likely that participants would lose interest. • The study was seen across multiple social media platforms (Facebook, Twitter, Instagram) via re-tweeting and re-posting. • The initial sample was heavily skewed towards white, professional middle class individuals. However, this changed after the first stage of theoretical sampling (recruiting participants directly from death-positive Facebook groups). Although this allowed for a more diverse demographic in the sense of education and occupation, participants were predominantly white British. In some qualitative studies this could be considered a limitation, however, in a grounded theory study, sampling is geared towards theory construction rather than population representativeness, therefore, this was not seen as problematic. • Research suggests that a person’s fear of death significantly reduces with age (Sinoff, 2019). This could suggest that older individuals are more open to thinking and talking about death and dying which could be potentially problematic as elderly individuals are less likely to have access to social media and therefore less likely to see the study. However, this study managed to recruit five participants, 12.5%, that were over the age of seventy. 93 perspectives of how individuals become open to thinking and talking about death and dying, a qualitative methodology was employed. 4.3.3.1 Semi-structured Interviews Sixteen participants were interviewed as part of the initial sample. Interviews lasted between 25 to 117 minutes, with a mean time of 67.4 minutes. Table 7 - Length of Interviews Conducted in the Initial Sample It is essential to gather rich data to develop a strong grounded theory (Charmaz, 2014). Charmaz (2014) advocates using interviews as an effective way of gathering rich data. As this study aimed to explore how individuals begin to actively think and openly talk about death and dying, the data gathered was qualitative. Semi-structured interviews are a widely used qualitative method that enables the researcher to explore how a phenomenon is understood by those who experience it. This study utilized semi-structured interviews to explore participants' openness towards death and dying and how this openness was reached. This enabled me to obtain participants' interpretations of their experiences whilst paying particular attention to what these experiences meant to them. The use of semi-structured interviews allowed for an in-depth exploration of the research topic and, therefore, was a helpful method for interpretive enquiry (Charmaz, 2006). The in-depth nature of semi-structured interviews allowed participants to share detailed descriptions of their individual experiences, which would otherwise be undisclosed in quantitative data (Madrigal & McCain, 2012). This resulted in Participant Length of Interview (Minutes) (P01) 74 (P02) 60 (P03) 81 (P04) 108 (P05) 33 (P06) 25 (P07) 58 (P08) 70 (P09) 94 (P10) 54 (P11) 57 (P12) 51 (P13) 49 (P14) 117 (P15) 91 (P16) 60 94 data that revealed participants' actions, feelings, views, intentions and experiences of becoming open to thinking and talking about death and dying. A grounded theory methodology seeks to explore social processes and actions. As constructivist grounded theory is rooted in symbolic interactionism, it is important to start with open-ended questions that encourage participants to discuss the meanings behind their actions. This study used open-ended questions to direct the discussion around the topic of death and dying. Using open-ended, non-judgemental interview questions encouraged unanticipated stories and statements to emerge from the data. After open-ended questions were used to elicit detailed descriptions of participants' individual experiences, further questions were asked to clarify statements and encouraged participants to elaborate on the issues discussed. As a result, interviews were led by participants' concerns, which provided a deeper understanding of how individuals become open to thinking and talking about death and dying. Below I have outlined the interview objectives. Interview objectives: • To explore the responses of participants that have had a first-hand experience of the phenomena in question. • To obtain in-depth responses of participants' experiences and perceptions of openness towards death and dying. • To use open-ended questions to elicit detailed descriptions of participants' individual experiences of openness towards death and dying. • To understand participants' meanings, views and experiences of the phenomena in question. • To follow up on unanticipated experiences, statements, views and actions. 4.3.3.2 The Interview Schedule All sixteen interviews (in the initial sample) were conducted using the interview schedule to guide and initiate the conversation around death and dying, particularly openness towards death communication. A preliminary interview schedule was designed consisting of open-ended questions and follow-up probes. For example, the following questions demonstrate the interviewing style used: • Do you ever talk about death? In what context have these conversations arisen (e.g., your own potential death, the potential death of the other party in the conversation or the actual or potential death of a third party etc. What has prompted these conversations? Who initiated them? If it was you who initiated the discussion around death and dying what was the response of the person/people to whom you were talking? 95 • To what extent do you feel comfortable talking about death? Why? Has your comfortableness with the subject changed over time? If yes it has changed, what do you feel prompted this change? • Has the nature of the conversations changed over time? Or does it depend on the context in which the conversation arises? • When you do think of death what are the key issues that you're thinking of? • Have you ever thought about your own death? What circumstances prompt this and what were the key issues you were thinking about? How did it make you feel? The full interview agenda can be found in Appendix 2. The interview schedule acted as a topic guide, which assisted participants in talking about their experiences of openness to death allowing the interview to remain spontaneous and fluid. The interview schedule was not intended to be followed verbatim. Instead, it functioned as a provisional guide, which prompted participants to discuss death, dying and their openness towards the subject without placing constraints on the discussion. This enabled me to address the research aim whilst allowing flexibility to gather detailed descriptions of the phenomena. The interview schedule was designed to provide questions and prompts to elicit responses from participants; however, the interview needed to have a natural flow allowing participants to freely discuss any relevant topics that arose from the conversation. Although the interview schedule was used to guide and initiate the conversation, participants were encouraged to explore all topics that they considered relevant. As a result, interviews did not follow the same format; instead, interviews varied according to participants' concerns. The interview schedule provided a starting point for questions. Not all questions were asked to each participant; instead, the interview schedule acted as a guide rather than a rigid schedule. The interview schedule was heavily used for some interviews, and for others, it was barely utalised. For example, during one interview, four interview questions were sufficient to obtain a long (91 minutes) and in-depth description of how the participant's openness towards death had changed over time. Interview questions and follow-up probes were modified during the interview to expand, enhance and clarify participants' responses. Some of the phrases used to probe further were: • Could you provide an example of ______? • Could you please say more about ______? • What circumstances prompted ______? • What was your reaction to ______? 96 The interview questions and follow-up probes followed Charmaz's (2014) guidance for constructing an interview guide, thus ensuring that participants' concerns, perspectives, situations, implicit meanings and assumptions were drawn out. In doing so, constructivist grounded theory principles informed the interviews, which assisted in exploring the social interactions and symbolic meanings influencing participants' openness towards death and dying. As stated above, the interview schedule was treated as a flexible tool to collect data on how individuals became open to thinking and talking about death and dying. This approach fits well with theoretical sampling as I explored possible theoretical directions further in subsequent interviews; therefore, the analysis shaped the interview agenda. Although early theoretical ideas were explored with subsequent participants, these ideas were only raised in the interview if the participant indicated that it was relevant to their openness towards death. Therefore, the interview guide was used as a flexible tool which was revised as significant theoretical ideas emerged (Charmaz, 2014). 4.3.3.3 Pre COVID-19 Interviews Five interviews were conducted pre-COVID-19. As stated in section 4.3.2 ‘Recruitment’, participants were recruited via social media (Facebook/Twitter). Participants that were interested in taking part would contact me directly via email. A copy of the information sheet and potential interview questions were sent to all participants prior to the interview (see Appendixes 3 and 4 for the information sheet and potential interview questions). This ensured that the nature of the research was fully understood. As death and dying are sensitive topics, it was important that participants felt comfortable; therefore, interviews were conducted on a one-to-one basis in a private place of their choosing. The first five interviews were conducted on campus at the University of Huddersfield from the 6th of August 2019 until the 11th of March 2020. These interviews lasted between 33 to 108 minutes, with a mean time of 71.2 minutes. Participants were contacted via email to arrange the time and place of the interview. Participants were met and taken to a booked meeting room on campus. Before the start of the interview, participants were welcomed, and the purpose of the research was discussed. Participants were then presented with a paper copy of the information sheet, background questionnaire and consent form. Following this, the consent form was discussed, outlining the procedures in place to ensure confidentiality and anonymity (see Appendix 5 for consent form). Participants would then fill out the background questionnaire (see Appendix 6 for the background questionnaire) and sign the consent form. I would then obtain permission from the participant to record their interview. The interview began when the participant was ready, and the paperwork was signed. 97 All interviews were digitally recorded on an encrypted/password-protected mobile phone. The audio recordings were downloaded onto my university K drive immediately after the interview, and the original recording was deleted from the mobile device. In addition, all transcripts, consent forms and background questionnaires were stored securely on my university K drive in separate folders. Paper copies of the consent forms were locked in a secure folder. Participants were debriefed at the end of each interview. This enabled participants to ask questions about the research project and reiterated the information provided at the start of the study and on the information sheet. Memos were recorded to document my initial thoughts and observations after each interview. All interviews were then transcribed verbatim and analysed immediately after transcription. 4.3.3.4 Mid-COVID-19 Interviews Although interviews are typically conducted in person, COVID-19 meant this could no longer be the case. The interviews conducted post the onset of the social restrictions imposed in response to the COVID-19 pandemic took place from the 1st of April 2020 until the 22nd of June 2020. One interview was conducted via phone, and the following ten interviews were conducted over Zoom/Microsoft Teams. All interviews took place on a one-to-one basis and lasted between 25 to 117 minutes, with a mean time of 65.7 minutes. The interview procedures for the mid-COVID-19 interviews were largely the same as the pre-COVID-19 interviews; however, there were some differences. Participants were not supplied with a hard copy of the information sheet and consent form; instead, these were attached to the contact email; therefore, consent forms and background questionnaires needed to be completed and signed electronically. On the whole, participants did not find this problematic; however, one participant had difficulties signing the consent form electronically. Alternatively, she signed a hard copy and sent it to my address. 4.3.3.4.1 Evaluating Internet-based Interviews The use of telecommunication software such as Skype, Zoom or Microsoft Teams was already becoming popular as a data collection tool prior to the pandemic (Weller, 2017; Mirick & Wladkowski, 2019). Although internet-based interviewing has many advantages, there are some disadvantages to using this type of interviewing that I will discuss. On the whole, the interviews went well. However, external factors did cause some interruptions to the flow of the interviews (e.g., internet connection, external noise and technical issues). As the mid-COVID-19 interviews took place on Zoom/Microsoft Teams, it took a while to become confident with using this type of software as it was not something with which I was familiar. However, once I had familiarised myself with the technology, I found using Zoom//Microsoft Teams to be a relatively easy and effective tool for data collection. 98 The flexibility of internet-based interviews enabled individuals to participate who may have otherwise found it difficult to find the time. For example, some participants worked as nurses and care workers; therefore, in the middle of a pandemic, it would have been difficult, if not impossible, for them to find the time to take part in an interview. As internet-based interviews are usually held in the participant’s home, this could encourage some participants to talk more openly about their experiences, thoughts and feelings of openness towards death and dying. Some researchers suggest that this can be attributed to the fact that both the participants and the researcher can remain “in a safe location” and are not “imposing on each other’s personal space” (Hanna, 2012). In addition, being in a familiar environment could help shy or introverted participants feel more comfortable opening up because they are behind a screen (Seitz, 2015). As the nature of this research is sensitive, another advantage of this type of interviewing is that it gives participants the power to end the interview if the subject matter becomes too upsetting without the need to provide a reason. None of the participants decided to end the interview prematurely; however, for some participants, knowing that the interview could be stopped at any point could have encouraged more open responses to the interview questions. Additionally, some researchers argue that conducting internet-based interviews can hinder rapport from building between the participant and researcher (Rowley, 2012; Cater, 2014). However, I would disagree with this statement based on my own experiences of conducting internet-based interviews. I found that rapport was easily achieved, and whilst the subject matter was sensitive, participants appeared relaxed during interviews. Some participants actually wanted to extend their interview by asking further questions about the research and why I had chosen to study such a topic. In addition, most participants discussed how much they enjoyed the interview. However, there are some disadvantages to this type of interviewing, for example, the unpredictability of the internet connection. Seitz (2015) states that a “loss of intimacy” can be created by technical difficulties. Seitz (2015) argues that technical difficulties during emotional conversations can create “an abrupt feeling” during an interview that is difficult to move on from. On two occasions, the internet connection was lost at the start of the interview. This took a while to fix, with participants having to continuously log on and off during interviews. Although these issues were not helpful, they had little impact on the interview once technical difficulties were resolved. However, during one interview, the internet connection was lost whilst a participant was explaining an emotional experience that happened after the death of her mother. Although this was a little embarrassing for me, and I had to ask the participant to please retell her experience, there was no problem resuming the conversation. 99 Another issue that presented itself was whether to turn on the camera during interviews. I always had my camera on whilst conducting the interviews; however, one participant decided not to turn the camera on. Although talking to a black screen felt a little uncomfortable, this did not affect the interview. In fact, this was one of the longest and most detailed interviews that occurred. However, this could cause difficulties for the interviewee when trying to elicit responses from participants (e.g., the absence of nonverbal cues and the difficulties of talking into a void). Research suggests that an absence of nonverbal cues (body language, facial expressions) can result in “mechanical and cold” interviews (Cohen, 2007; Novick, 2008). Although interviews were not conducted in person, Zoom and Microsoft Teams enabled me to visually see participants and their nonverbal cues. However, the first interview conducted mid-COVID-19 was a telephone interview. This was the shortest out of the sixteen interviews (25 minutes). I found it difficult to elicit detailed responses from this participant, which could be attributed to an absence of nonverbal cues. Below I have outlined some further advantages and disadvantages of internet-based interviews. Table 8 - Advantages and Disadvantages of Internet-based Interviews Advantages of Internet-based Interviews • Reduces risk to personal safety (the researcher has the ability to stop the interview at any time). • The participant has the ability to stop the interview if they become uncomfortable (without fear or embarrassment of asking to stop the interview) which is particularly pertinent when studying sensitive subjects such as death and dying. • The flexibility of internet-based interviews allows individuals to participate that may have otherwise been too busy. • Interviews can be easily conducted from the researchers/participants home. • A wider geographical area and range of participants can be accessed. Disadvantages of Internet-based Interviews • Technical difficulties can create a “loss of intimacy” (Seitz, 2015). • Participants need access to the software (Skype, Microsoft Teams, Zoom) and knowledge on how the software works (Lo Iacono, Symonds and Brown 2016). • Some researchers suggest that internet-based interviews hinder rapport (Rowley, 2012; Cater, 2014) • Excludes potential participants who do not have access to the internet (Lo Iacono, Symonds and Brown 2016). • Older participants may be reluctant to use this type of software (Sullivan, 2021). 4.3.3.5 Follow-up Interviews Follow-up interviews were not conducted with participants in the initial sample. After collecting and analysing the initial data, I felt as though I had enough rich data to develop some tentative categories; therefore, I began theoretical sampling. 100 4.4 Theoretical Sampling (Stage One) The following section describes the sample and recruitment, ethical considerations and data collection for the first stage of theoretical sampling. Following a constructivist grounded theory approach to data collection, theoretical sampling was used to explore the tentative categories that emerged from the initial sample through further empirical enquiry (Charmaz, 2014). Theoretical sampling is a form of sampling that aids the researcher to collect data to refine and expand on the categories developed in the emerging theory (Charmaz, 2014). Unlike purposive sampling, theoretical sampling involves simultaneously collecting and analysing data to determine what data is needed to develop the grounded theory further; therefore, theoretical sampling is theoretically orientated (Conlon et al., 2020). In the current study, theoretical sampling was used to guide how, where and from whom additional data should be gathered (Conlon et al., 2020). I sought participants whose experiences were relevant to or could expand on the tentative categories from the initial sample; therefore, I was able to elaborate on and strengthen the emerging theory. 4.4.1 The Sample (Theoretical Sampling- Stage One) Fifteen participants were recruited in the first stage of theoretical sampling. The initial sample was recruited to provide maximum variation in how participants became open to thinking and talking about death and dying. The aim of collecting the initial sample is to purposively recruit participants who can answer the research question (Tie, Birks & Francis, 2019). Once the researcher collects and analyses this data, theoretical sampling can begin. After the initial sample, all subsequent data was determined by theoretical sampling. Theoretical sampling aims to identify new participants based on the data analysed from the initial sample. Theoretical sampling was used to elaborate and refine the categories constituting the emerging theory and define any gaps amongst the categories derived from the data analysis (Birks & Mills, 2015). Theoretical sampling was also used to develop the properties from the emerging categories until no new properties emerged (Charmaz, 2006). Theoretical sampling (stage one) sought to recruit participants that could identify a specific experience or turning point moment where their openness towards thinking and talking about death and dying started to change (further details on how theoretical sampling was established are provided in section 4.7.2 ‘Data Analysis Within This Study’. Below I have outlined the inclusion and exclusion criteria for theoretical sampling (stage one), along with the rationale for the criteria. 101 Table 9 - Inclusion and Exclusion Criteria for Theoretical Sampling (Stage One) Theoretical Sampling (Stage One) – Turning Point Moments Criteria Details Rationale Inclusion Criteria • Participants must be open to thinking and talking about death and dying • Participants must be able to identify a specific experience/turning point moment where their openness to death started to change • Participants in the initial sample could identify a particular experience or turning point moment where their openness towards death and dying started to change. Therefore, I decided to explore this concept further. Exclusion Criteria • Individuals living outside of the UK • This study aimed to look at openness towards death and dying within the UK. 4.4.2 Recruitment (Theoretical Sampling- Stage One) Social media was used to recruit potential participants. Similar to the initial sample, a Facebook post was sent out; however, the recruitment rate was low this time. Despite several Tweets/Facebook posts going out and being reposted/re-tweeted, only two participants came forward through this method over two months. Therefore, I decided to think about other ways to recruit potential participants. As the study aimed to explore openness towards death and dying, I decided to try to recruit participants from death-positive groups on social media. This was a successful recruiting strategy, as thirty-six potential participants requested further information. The two main death-positive Facebook groups were The Death Group and Death Chat. However, other groups were also contacted, such as: • Todmorden Death Café • Death Café Huddersfield • A Positive Death UK • Death Café Bristol • The Death Positive Library Permission was obtained from the administrators of these Facebook pages before advertising the study. The subsequent tweets/posts all had a meme-like image. This meme-like image attempted to attract the attention of potential participants. Two meme-like images were created (shown in Figures 3 and 4), one quite gothic and the other humorous. It was decided that the humorous image was more appropriate as I hoped that using the image would both engage and encourage potential participants to request further information about the study and increase the chance of the image 102 being forwarded to other users (see Appendix 9 for Theoretical Sampling - Stage One recruitment poster). Overall, this was an effective recruitment strategy as the post was forwarded onto other social media platforms, i.e., Instagram. In addition, it allowed me to target specific groups in order to answer the research aim. For example, by targeting death-positive groups on Facebook and Twitter, I could directly recruit those who experienced a turning point in their openness towards death. Although most participants were recruited from death-positive groups on Facebook (n = 13), one participant was recruited from my personal Twitter account, one participant was recruited from the personal Facebook account of one of my supervisors and one participant was recruited after the advertisement was forwarded to Instagram. Figure 5 depicts the recruitment process for Theoretical Sampling (Stage One). Figure 3 – Potential Humorous Recruitment Poster for Theoretical Sampling (Stage 1) Figure 4 – Potential Gothic Recruitment Poster for Theoretical Sampling (Stage 1) 103 Figure 5 - Recruitment Process - Theoretical Sampling (Stage One) 104 4.4.3 Data Collection (Theoretical Sampling- Stage One) During this stage of sampling, the data collection approach changed to collecting written accounts. As stated in section 4.4.2, participants were recruited via social media. All potential participants were sent the information sheet detailing the nature of the research (see Appendix 10 for Theoretical Sampling (Stage One) information sheet). Participants who agreed to participate were then sent a consent form and background questionnaire to sign and complete (see Appendices 11 and 6 for theoretical sampling consent form and background questionnaire). Although participants were given a suggested timeframe to return their written accounts within two weeks of agreeing to take part, it was made clear that written accounts could be returned in their own time. Participants were also sent a debriefing document after I had received their written account (see Appendix 12 for theoretical sampling debrief). This reiterated the purpose of the study and their right to withdraw within two weeks of sending the written account. All written accounts were analysed immediately after they were received. 4.4.3.1 Written Accounts (Theoretical Sampling- Stage One) After analysing the data collected from the initial sample, it became apparent that the tentative categories in the emerging theory needed to be further developed. During this stage, I decided to collect data via written accounts. Written accounts were chosen as they provided good quality, rich descriptive data, which was highly focused and more reflective than the data collected via interviews. By using written accounts as data, I was able to explore in more fine detail the tentative analytic directions of the research by gathering more reflective responses about the ideas generated from the initial analysis. Fifteen participants agreed to take part in this stage of theoretical sampling. Written accounts were collected from the 23rd of June 2021 until the 13th of September 2021. Fourteen participants completed a written account, and one participant communicated their account verbally via Microsoft Teams. This method was tested with one participant from the initial sample to ensure that potential participants would understand the method. The data collected from the pilot study was not used in the developed grounded theory. Instead, this was used as an exploratory stage to evaluate the method rather than as part of the main study. Initially, I had intended to complete this exercise with three participants from the initial sample. However, after asking one participant from the initial sample to complete a written account, it was clear that the method was understood. Therefore, I began theoretical sampling. 105 Participants were asked to provide a written account of a specific experience or turning point moment which prompted them to become or begin to become more open to thinking and talking about death and dying. The information sheet outlined what was required from participants and defined what was meant by a turning point moment. Examples of specific experiences or turning point moments were presented in the information sheet (See Appendix 10 for information sheet). However, it was made clear to participants that I would still like to hear from them if they could identify a particular experience or turning point moment that was not listed on the information sheet. Participants were asked to provide the following information: ● A detailed account of their specific experience or tuning point moment. ● A detailed account of how and why this experience or turning point moment prompted them to become or contributed to them becoming more open to thinking and talking about death and dying. 4.4.3.2 Evaluating Written Accounts as Data I found that the written data provided insights into how these participants became open to thinking and talking about death and dying, equivalent to the richness and complexity of the data gathered from verbal interviews. Participants conveyed their experiences of openness with great clarity, which helped to create a picture of how past and present experiences and perceptions of death and dying led to more openness. I would argue that grounded theory is particularly suited to this type of method as the chronological ordering of data aided in exploring processes and their social context. Moreover, using written accounts as data was easier to analyse and engage with than the data acquired through semi-structured interviews. This could be attributed to the fact that all participants were well-educated and felt comfortable using written language to communicate their experiences. However, the disadvantages of using this method were evident in this study. Although participants were asked to produce a written account, one participant contacted me to see if she could be interviewed instead. This participant had dyslexia and found written communication difficult. Therefore, this method excludes potential participants who might find written communication challenging. Another advantage of this method is that, unlike interviews, written accounts enable the participant to consider the question before answering; therefore, self-reflective pieces are more likely to be focused and self-consciously ordered than face-to-face interviews (Handy & Ross, 2005). 106 Research suggests that some participants may be more inclined to provide an in-depth written account of their experiences rather than communicate them verbally via a face-to-face interview (Letherby & Zdrowski, 1995). As death and dying are sensitive topics, it could be argued that it was easier for participants to write about such issues rather than to communicate them verbally. The limited personal contact between the participant and the researcher could make it easier for participants to share such sensitive information. Interview data often results in spontaneous answers to highly personal questions. However, as written accounts can be completed in the participant’s own time and responses more easily controlled, this could result in more openness and a greater willingness to reveal information. I found that participants could communicate their experiences of openness towards death with great clarity. The only disadvantage of using this method was that I could not immediately delve deeper into the issues written by participants. However, follow-up questions were sent to all participants to encourage them to elaborate on and clarify their responses. 4.4.3.3 Follow-up Questions and Interviews (Theoretical sampling – Stage One) Follow-up questions were sent to all participants in theoretical sampling (stage one). Theoretical sampling (stage one) did not have a good response, with only eight out of fifteen participants completing follow-up questions. Out of the eight, three participants requested a follow-up interview via Zoom/Microsoft Teams, and five participants answered follow-up questions via email. Follow-up questions were modified for each participant, and open-ended questions were used to clarify statements and explore the emerging themes from the written accounts. Follow-up questions were also asked about other categories if the data indicated that it would be useful to the emerging theory. The questions and participants' responses were then added to the original written account document sent by participants. The data gathered were coded the same way as the initial interviews and written accounts. This is discussed further in section 4.7 ‘Data Analysis’. 4.5 Theoretical Sampling (Stage Two) The following section will justify the sample sought and the recruitment process employed for this stage of theoretical sampling. I will then discuss the methods of data collection used for this stage of the grounded theory study. 4.5.1 The Sample (Theoretical Sampling - Stage Two) Nine participants were recruited in the second stage of theoretical sampling. Theoretical sampling (stage two) sought to recruit participants that had explored their relationship with death. Exploring 107 their relationship with death was an in vivo code taken from the initial sample. The analysis from both the initial and theoretical sample (stage one) indicated that exploring their relationship with death was a significant part of how these participants became open to thinking and talking about death and dying. Therefore, this was explored further via theoretical sampling. Below I have outlined the inclusion and exclusion criteria for theoretical sampling (stage two), along with the rationale for the criteria. Table 10 - Inclusion and Exclusion Criteria for Theoretical Sampling (Stage Two) Theoretical Sampling (Stage Two) Criteria Details Rationale Inclusion Criteria • Participants must be open to thinking and talking about death and dying • Participants must have explored their relationship with death, and this must have contributed to more openness around the subject • In both the initial sample and the first stage of theoretical sampling, exploring their relationship with death was a significant part of becoming open to the subject. Therefore, it was important to explore this further via theoretical sampling. Exclusion Criteria • Individuals living outside of the UK • This study aimed to look at openness towards death and dying within the UK. 4.5.2 Recruitment (Theoretical Sampling - Stage Two) Like theoretical sampling (stage one), theoretical sampling (stage two) used social media to recruit potential participants. A Facebook post and recruitment tweet was sent from my personal account and that of my supervisory team. Like theoretical sampling (stage one), the recruitment rate was low, with only one participant agreeing to participate. Due to the success of directly recruiting from death-positive groups on social media during the first stage of theoretical sampling, this recruitment strategy was also used for this stage of theoretical sampling. The following death-positive Facebook groups were contacted: • Death Café Huddersfield • Death Café Bristol • The Death Group • Death Chat Like theoretical sampling (stage one), permission was obtained from the administrators of these Facebook pages before advertising the study. The meme-like image presented in Figure 3, section 108 4.4.2, was used in the subsequent tweets/posts to advertise this stage of the study (see Appendix 14 for Theoretical Sampling - Stage Two recruitment poster). Seven participants were recruited via death-positive groups on Facebook, one from my personal Facebook account, and one was recruited after she was passed on the details of the study via a friend. Figure 6 depicts the recruitment process for Theoretical Sampling (Stage Two). 109 Figure 6 - Recruitment Process - Theoretical Sampling (Stage Two) 110 In section 4.3.2, I outlined the advantages and disadvantages of using social media to recruit participants. One disadvantage of this type of recruitment was present in this stage of theoretical sampling. Internet-based recruitment strategies does not allow for individuals without access to the internet. Although most participants were recruited directly via social media, one participant came across the study through a friend who viewed the post on Facebook. This participant was eighty and did not have a social media account; however, she still wanted to participate. As a result, her friend (who saw the original post on social media) passed on her contact details, and a phone interview was conducted. 4.5.2 Data Collection (Theoretical Sampling - Stage Two) All potential participants were sent the information sheet detailing the nature of the research (see Appendix 15 for Theoretical Sampling (Stage Two) information sheet). Participants who agreed to take part were emailed the consent form and background questionnaire to sign and complete (see Appendices 11 and 6 for theoretical sampling consent form and background questionnaire). Participants were given a suggested timeframe of two weeks to complete the written account; however, it was made clear that written accounts could be returned in their own time. After receiving the written account, participants were sent a debriefing document that reiterated the purpose of the study and their right to withdraw within two weeks of sending the written account (see Appendix 16 for theoretical sampling (stage two) debriefing document). All written accounts were analysed immediately after they were received. 4.5.2.1 Written Accounts (Theoretical Sampling - Stage Two) Nine participants agreed to take part in this stage of theoretical sampling. Written accounts were collected from November 29th, 2021, until January 30th, 2022. Eight participants completed a written account, and one participant communicated their account verbally via a telephone interview. Written accounts varied between one paragraph to four pages. Participants were asked to provide a written account of how they have explored their relationship with death and how this led them to become or begin to become more open to thinking and talking about death and dying. Exploring their relationship with death was defined on the participant information sheet (See appendix 15 for information sheet for theoretical sampling – stage two). Although the information sheet provided examples of how potential participants could have explored their relationship with death, it was made clear that I would still like to hear from potential participants that had explored their relationship with death in ways that were not included in the examples provided. Participants were asked to provide the following information: 111 ● A detailed account of how they explored their relationship with death. ● A detailed account of how/why exploring their relationship with death had prompted them to become or contributed to them becoming open to thinking and talking about death and dying. 4.5.2.2 Follow-up Questions and Interviews (Theoretical Sampling – Stage Two) Follow-up questions were sent to all participants in theoretical sampling (Stage Two). Theoretical sampling (stage two) had a better response to the completion of the follow-up questions than theoretical sampling (stage one), with seven out of the nine participants completing the follow-up questions. One participant requested an interview via Microsoft Teams, and six participants answered follow-up questions via email. Follow-up questions were modified for each participant. Follow-up questions were used to clarify statements and explore the emerging themes from the written accounts. Follow-up questions were also asked about other categories if the data indicated that it would be useful to the emerging theory. All follow-up questions and participants' responses were added to the original written account document sent by participants. The data gathered were coded the same way as the initial interviews and written accounts. This will be discussed in further detail in section 4.7 ‘Data Analysis’. 4.5.2.3 Theoretical Saturation Theoretical sampling was carried out until theoretical saturation was reached. Although no set number of samples is required to achieve theoretical saturation, this study achieved theoretical saturation after two stages (Theoretical Sampling – Stage One and Theoretical Sampling - Stage Two). Theoretical saturation was reached when no new theoretical insights were gathered from the data, indicating that the categories had been saturated with data (Conlon et al., 2020). Strauss and Corbin (1998) state that theoretical saturation occurs when the following is achieved: • No new theoretical insights emerge from the data • The dimension and properties of a category are developed • The relationships among categories are established Theoretical saturation does not indicate that there are no more cases to include or data to collect; instead, theoretical saturation occurs when it is no longer necessary to collect new data to develop the established grounded theory (Flick, 2018). Due to the nature of a grounded theory study, the exact number of participants required to develop the grounded theory was not known in advance. Therefore, there were no set numbers for both stages of theoretical sampling. The decision to cease sampling was made after the second stage of theoretical sampling as no new properties emerged from the data, and the relationships among the developed categories had been established. It was 112 therefore decided that enough robust data was gathered to support the developed theory (Charmaz, 2014). No new theoretical insights were gathered from this stage of data collection and analysis; therefore, theoretical saturation was reached. How theoretical saturation was reached will be further explained in section 4.6.2 ‘Data Analysis Within This Study’. 4.6 Ethical Considerations The study received full ethical approval from the School Research Ethics and Integrity Committee, School of Human and Health Sciences, University of Huddersfield, in May 2019 (see Appendix 7 for approved ethics application). Death and dying are sensitive topics; therefore, it was important that participants were fully informed about the nature of the research before agreeing to participate. Participants were provided with the information sheet and interview questions before deciding whether to participate in the research. This gave potential participants a chance to decide if the study was something they wished to participate in and ensured that anyone who found the subject matter distressing was free to decline. It was made clear to all participants that they could refuse to answer any questions/potential questions that made them feel uncomfortable without the need to provide a reason. All participants consented to answer all potential interview questions. The information sheet explicitly explained the purpose of the study. This provided clear details of what is expected of a participant in terms of commitment, the procedures in place to ensure anonymity and what would happen to the data they provided. Every effort was made to ensure that the data provided could not be traced back to participants. All identifying characteristics were removed throughout the research process, and participants were allocated a number to ensure anonymity, i.e., (P01). All interview transcripts were anonymised before analysis, and particular care was taken to remove identifying details such as names and places. The information sheet also informed participants of the parties who would or may have access to their data. My contact details were provided should participants have any further questions. In addition, participants were briefed before the interview to ensure all details of the research had been understood. Participants were also provided with the appropriate number to call if psychological distress should occur. Participants were also provided with a consent form that clearly outlined their right to withdraw from the study up to two weeks after receiving their transcript. Analysis began two weeks after participants received their transcripts back. No participants withdrew consent after receiving their transcript. In addition, once the transcripts were sent back, participants could decide if they wished to remove anything they no longer wished to disclose. However, no participant requested to remove any information from their transcript. It was also made clear that all transcripts, audio recordings 113 and any other personally identifiable data will be destroyed within ten years of completion of the research project in line with the university data protection policy. Participants were debriefed post-interview. This allowed participants to freely ask any questions about the research and allowed me to reiterate the information provided at the start of the interview and on the information sheet (see Appendix 8 for debriefing information). Due to the topic's sensitive nature, it was important that I remained sensitive and observant when soliciting responses from participants. For example, during an interview, a participant started to cry after talking about the death of her childhood dog. When I observed this, I stopped the interview immediately and tried to comfort her. We talked about the importance of our animals and the significant impact they have had on our lives. I then asked the participant if she felt okay continuing the interview, and she agreed. This was the first, and only time a participant became visibly upset during an interview. 4.6.1 Ethical Amendments It was made clear in the original ethics application that due to the nature of grounded theory; the sample, recruitment and research methods cannot be known in advance as the design of a grounded theory study evolves as the study progresses. After collecting and analysing the data from the initial sample, I began to think about theoretical sampling. Although theoretical sampling did not require any particular sensitive groups, I decided to modify my research method to reflect this new stage of data collection. In the first part of this study (collecting and analysing data from the initial sample), I conducted semi-structured interviews with all participants. For this new stage of data collection, I wanted to use individual written accounts to explore the most prominent tentative categories from the initial analysis; therefore, an ethical amendment was required (See Appendix 13 for ethical revisions). 114 4.7 Data Analysis As grounded theory is an iterative method, data analysis is not a linear process, therefore, I will describe the procedures of data analysis within grounded theory before going on to explain how these methods were used within this grounded theory study. 4.7.1 Constructivist Grounded Theory Methods of Data Analysis The first step in data analysis is the creation of codes from raw data. Coding in grounded theory is the pivotal link between data collection and developing the emergent theory. Charmaz defines coding as naming fragments of the data with a label that summarises, categorises and accounts for the data segments (Charmaz, 2014, p. 111). Grounded theory coding requires the researcher to stop and ask analytical questions about the data collected. These questions not only further the researcher's insight into the phenomenon being studied but also help direct the subsequent data-gathering towards the analytical issues that the researcher is defining (Charmaz, 2014). Codes are allocated to small segments of the data in order to define what the data are about. These codes form the pivotal link between data collection and theory construction. Consistent with Charmaz's approach to grounded theory coding, the data was coded in two stages: initial and focused coding. The first stage of analysis is initial coding. Line-by-line initial coding sticks closely to the data and involves coding the data with codes that reveal actions. Coding the data with words that reveal actions prevents the researcher from coding people as types. Coding people as types assign fixed labels to participants, which may cause the researcher to concentrate on the individual instead of what is occurring in the data (Birks & Mills, 2015). This makes participants one-dimensional; the behaviour upon which the code is based may only signify a small part of who that participant is and what they do (Charmaz, 2014). Both what they do and who they are may change as their situations change; therefore, this type of coding fixes individuals in a specific time and space and reduces the opportunity to identify variation in the phenomenon being studied. Additionally, coding data via actions prevent the researcher from making conceptual leaps before the necessary analytical work has been completed (Charmaz, 2006). The codes developed at this stage of analysis are comparative, tentative and "grounded in the data" (Charmaz, 2014). Initial codes are tentative because the researcher must stay open to other analytic possibilities that best describe the data. Initial coding is used to "spark" the researcher's creative thinking, enabling new ideas and concepts to arise from the data (Charmaz, 2014). This initial step in coding leads the researcher towards later decisions about defining the core conceptual categories. Applying initial 115 codes allows the researcher to ask questions about the data and provide a tentative set of ideas to explore further. The second stage of analysis consists of focused coding. Focused codes occur more frequently amongst the initial codes and/or have more theoretical significance than other initial codes (Charmaz, 2014). In this stage, it is important to decide which initial codes make the most analytical sense to categorise the data (Charmaz, 2014). Focused coding condenses and refines the work produced in the initial coding stage and highlights the key findings from the emerging analysis. Focused codes are often more conceptual than the codes developed in the initial analysis and further the theoretical direction of the research (Glaser, 1978). Focused coding aims to establish the conceptual strength of the initial line-by-line codes. By comparing the initial codes with the data, the researcher can distinguish which codes have greater analytic power, thus, indicating which focused codes could be promising tentative categories to explore further. Tentative categories are then further progressed by memo writing. Memoing is a pivotal step between codes, tentative categories and theory construction. Memo-writing keeps the researcher actively engaged in the analysis and helps to intensify the level of abstraction of the emerging findings (Birks & Mills, 2015). Three types of memos were recorded throughout the research process: spontaneous, reflexive and analytical. Spontaneous memos occurred throughout all stages of analysis. Spontaneous memos recorded initial thoughts or reflexive thinking about the data. Spontaneous memos were usually short and impulsive and often developed into reflexive and analytical memos. Writing reflexive memos gives the researcher a space to engage in critical reflexivity. This is particularly important when conducting grounded theory research, as the research depends on the researcher's interpretation of the data. Reflexive memos enable the researcher to explore, question and articulate these interpretations, thus, raising theoretical sensitivity and preventing preconceived ideas from being pushed onto the research (Charmaz, 2014). Analytical memos record the researcher's analytical thoughts on the emerging analysis. This enables the researcher to develop ideas, treat codes as categories to analyse, record connections and comparisons that emerge within the data, discover gaps in the data collection and record possible questions and directions to peruse (Charmaz, 2014). Analytical memos are also used to raise focused codes to tentative categories. This form of memo writing helps to define the category, develop the properties of the category, specify the conditions under which that category arose, persisted or changed and show how categories relate to other categories (Charmaz, 2014). 116 Memos are created and used at every level of analysis to ensure that ideas and analytical directions present in the data are not overlooked. Once the analysis is complete, memos are manually sorted in order to integrate them into the emerging theory. Sorting enables the researcher to compare categories at an abstract level which helps to create the emergent theoretical framework (Charmaz, 2014). The advantage of grounded theory coding comes from this constant comparative involvement in the research process. In a grounded theory study, analysis proceeds by constant comparison. Constant comparative analysis starts after the first data is gathered and continues throughout all stages of the research process. This process helps the researcher to make analytical distinctions at each stage of analysis (Charmaz, 2014). This analytical process aids the researcher in discovering the similarities and differences within the data; through this, the researcher continually refines the emerging theoretical categories present in the data (Tie et al., 2019). These are reflected upon and analysed through memo writing. The constant comparative method distinguishes grounded theory from merely descriptive analysis and ensures that the resulting theory is "grounded" in the data. (Tie et al., 2019). 4.7.2 Data Analysis Within This Study The qualitative data gathered for this study involved a large amount of textual data from memos, written accounts and interview transcripts. Data analysis started after the first interview, and data were simultaneously collected and analysed until theoretical saturation was reached. The first stage of analysis was transcribing and completing the initial coding of the data gathered from the initial sample (sixteen interviews). Interviews were recorded on a password-protected mobile phone and transcribed verbatim (see Appendix 17 for transcript example). The recorder software enabled me to pause, rewind, stop and slow down the audio recording. Continuously listening to and rewinding the audio recording allowed me to immerse myself in the data and assisted with the familiarisation of the data in the initial stages. Initial notes and ideas were recorded after each interview and during and after transcription. At first, I considered using NVivo to help me manage the data; however, I found this constraining and left me feeling disconnected from the data. I also found that using NVivo restricted my analytical and creative thinking about the data. Therefore, I decided to complete the analysis by hand. The first step in grounded theory coding is initial coding. Transcripts were printed, and initial line-by-line coding was completed by hand. Coding by hand helped me to delve deeper into participants' responses and encouraged me to interact continuously with the data. Initial codes were written in 117 the margin next to each line on the paper copy of each transcript. All coded transcripts were stored in a designated folder. As stated in section 4.7.1, initial codes stick closely to the data and attempt to code with words that reflect action. During the initial coding stage, I studied the data line-by-line looking closely for its analytic importance (see Appendix 18 for initial coding example). Initial coding was completed with speed and spontaneity, as recommended by Charmaz (2014). Moving quickly through the data sparked my creative thinking and enabled me to view data from a fresh perspective. Initial codes labelled what I saw happening in the data. During this stage, I looked closely at the data asking myself what meanings could be observed within the data fragments. Following CGT methods of analysis, I made notes on all interview transcripts. These notes expressed my initial thoughts and ideas about the data. Initial ideas, phrases and thoughts about the data were written on a separate piece of paper. This was added to following the initial coding of each transcript and used to develop more theoretical codes as the study progressed. Furthermore, all analytical ideas that occurred during the initial coding stage were recorded in memos. During this stage, I found it challenging to produce codes with conceptual power. Instead, some codes appeared more descriptive than conceptual. Noting this in a methodological journal helped me identify and reflect on the difficulties I faced at this stage of analysis. In the journal, I noted that I found it challenging to assign codes with a satisfactory level of conceptual abstraction. Charmaz (2014) states that if the codes created in the initial analysis appear descriptive, the researcher should return to the data to code the initial codes. Coding the initial codes helps the researcher to think analytically about the data and sharpens the emerging analysis. I then went back to look at the initial codes to ensure they reached a certain level of conceptual abstraction. Table 11 shows how some initial codes were revised into more conceptual codes. Table 11 - Revised Initial Codes Descriptive Initial Code Initial Code (Revised) Seeing death in a more positive light Reconceptualising death Not wanting to talk about death Avoiding death-related conversations Not wanting a painful death Death-related fears and anxieties Reading death-related books Learning about death Feeling upset talking about death Emotional responses to death-related conversations This stage resulted in hundreds of initially unconnected codes and ideas about the data. In the journal, I noted that I found it challenging to sift through the many codes created in this stage of 118 analysis. Before beginning focused coding, I wanted to ensure that I was immersed in the data; therefore, I decided to write extensive notes on all interview transcripts. This resulted in eighty pages of detailed notes. This stage prompted me to start thinking analytically about the data. Although this stage helped to familiarise myself with the data and aided in sparking my analytical thinking, I still felt overwhelmed by the number of codes created from the initial analysis. I had all these unconnected codes and ideas about the data and moving from initial coding to focused coding seemed like a monumental task. The thought of sorting and synthesising the initial codes without missing something vital felt challenging. I had spent all this time listening to participants' statements, trying to carefully capture what they wanted to say and now had to make decisions about which initial codes should be cut from the progressing analysis. However, with Charmaz's notion that grounded theory is a "craft" that researchers practice in mind (Charmaz, 2006, p. 10), I began to think about ways that would enable me to sift through the initial codes and aid with the next level of abstraction, focused coding. Before moving on to the next level of coding, it is important to note that during the initial coding stage, the global COVID-19 pandemic hit. Reflecting on Charmaz’s approach to grounded theory, I felt it was important to document the potential impact that COVID-19 might have on the research. Charmaz asserts that research takes place within a particular context (Charmaz, 2014). This study occurred within a specific historical context, a global pandemic. As the death toll increased daily and death rates dominated the headlines, death had never been so present in our lives all at once. As this study aimed to look at how individuals actively thought and talked about issues relating to death and dying, it was important to look at the potential impact that COVID-19 might have on the research (see Appendix 19 for the first memo recorded about COVID-19). Whilst conducting grounded theory research, it is important to stay open to all possible theoretical directions indicated by the emerging analysis (Charmaz, 2014). During the first stage of data collection and analysis, COVID-19 seemed to impact how people thought and talked about death and dying. Eleven of the sixteen initial interviews were carried out during the pandemic. Out of eleven interviews, only one participant did not mention COVID-19. Participants were not prompted to talk about COVID-19; however, COVID-19 seemed to impact how people thought and talked about death and dying. Although COVID-19 was mentioned in ten interviews, participants varied in how much they referred to it. Some participants scarcely mentioned it, while for others, COVID-19 dominated the interview. Therefore, I decided to conduct a thematic analysis of these data, focusing on how the COVID-19 pandemic impacted how participants thought and talked about death and 119 dying. For more consideration of the impact of COVID, see Radley, King and Wager (2023). The analysis of the COVID-19 related data revealed that how people thought and talked about death and dying on a personal level was responsive to the wider circumstances in which people found themselves. For example, COVID-19 was a universally shared circumstance which forced people to start thinking and talking about death and dying; therefore, after speaking to my supervisors, I began to think about if this could suggest the same for more individual circumstances, (e.g., people’s individual death-related experiences). At this point, the initial data analysis had already indicated that people’s individual death-related experiences prompted them to begin to actively think and openly talk about death and dying; therefore, this was something to consider pursuing further. Figure 7 depicts the memo recorded after a supervision meeting that noted this possible analytical direction to explore further. Memo Taken after a Supervision Meeting – July 12th 2020 Almost all of the participants are talking about COVID-19 and raising it in the interviews. For some this has prompted them to think and talk more about death and dying. This could suggest that how people think and talk about death and dying personally is responsive to the wider circumstances in which people find themselves. COVID-19 is a universally shared circumstance which has forced people to start thinking and talking about death and dying; however, this could imply the same for more localised individual circumstances. One of the things that I could explore further is how circumstances force death awareness on people (e.g., by exploring groups of people who have been forced to think about death and dying in some way). By looking at these groups further, I can better understand and explain how death awareness leads people to actively think and openly talk about death and dying. However, before moving on to theoretical sampling, I must complete the initial and focused coding stage for all sixteen transcripts, this way I can really get to know what’s going on in the data before moving on to theoretical sampling. This stage enabled me to reflect on the emerging findings and think about possible analytic directions to pursue further (Charmaz, 2014). However, before moving on to theoretical sampling, I needed to begin the second stage of analysis, focused coding. After completing the initial coding of all data, I began focused coding. As stated in section 4.7.1, focused coding involves assessing which initial codes appear more frequently or have more theoretical significance than other initial codes (Charmaz, 2014). In this stage, the researcher decides which initial codes make the most analytical sense to categorise the data. After establishing some possible analytical directions of the research through initial coding, focused coding helped me to analyse, synthesise and conceptualise the larger segments of data (Charmaz, 2014). In the methodological journal, I note that after my progression monitoring (stage two), I started to consider if there is a general process by which individuals become able to actively think and openly talk about death and dying or if there may be several processes. This raised questions about whether Figure 7 – Memo Depicting the Influence of COVID-19 on How Participants Thought and Talked about Death and Dying 120 I should narrow the research to a specific group of individuals. However, I first needed to complete the focused coding of all data to see if there were commonalities or differences among the data. Figure 8 depicts the memo recorded about this potential challenge. Reflexive Memo Taken November 12th, 2020 Is it reasonable to presume that there is a general process by which individuals become able to actively think and openly talk about death and dying? There may be several processes. Initial coding indicates that there are similarities among participants. However, there are so many initial codes, so it's hard to see how they all fit together. Once I've completed focused coding, I need to look and see if people are describing different ways or if there are some similar experiences between participants. This also might affect theoretical sampling as I might have to narrow the research to a specific group who have had similar experiences. With this in mind, I returned to the data to continue focused coding. Focused coding was used to sift through the copious amount of data and helped to synthesise and conceptualise the work produced in the initial coding stage. I arrived at the focused codes by assessing the codes that emerged from the initial analysis. Assessing the initial codes involved comparing them with data and distinguishing which codes had greater analytical power. Comparing codes with codes enabled me to think about the ones that may be promising tentative categories. This condensed and sharpened the work produced in the initial coding stage and emphasised what was important in the emerging analysis. As I learn visually, I created mind maps for all participants. Returning to the data, I reviewed each transcript, looking for the most frequent and important codes generated from the initial analysis. Initial codes that became focused codes were then highlighted in the data. Initially, mind maps were created by hand. Handwritten mind maps were later created into word documents. The word documents detailed the following: • Participants’ background information • The most frequent/significant codes leading to openness • Descriptions of the frequent/significant codes • References to the data Mind maps varied between one and four pages. Creating mind maps helped me to distinguish what participants viewed as important and enabled me to identify which codes had greater analytical power. Like the initial coding stage, memos, initial thoughts, ideas and notes were recorded separately. This stage encouraged me to question which initial codes would become focused codes and, therefore, tentative categories to explore further. Figures 9, 10 and 11 demonstrate an example Figure 8 – Memo Exploring the Possibility of Multiple Processes to Actively Thinking and Openly Talking 121 of a mind map produced in this stage of analysis. This example can be seen in further detail in appendix 20. Figure 10 – Example Mind Map (Initial Sample) - Page 2 Figure 9 – Example Mind Map (Initial Sample) - Page 1 Figure 11 – Example Mind Map Initial Sample) - Page 3 122 I found this method especially helpful as it provided a concrete image of the emerging ideas. This type of visual imagery helped to progress the emerging analysis by highlighting what participants considered important and what they viewed as problematic. After completing the mind maps, memos were recorded on each participant explaining, in a narrative style, how the focused codes developed from each interview contributed to their openness (see Appendix 21 for a memo recorded on the most significant codes in relation to participant one’s data). The memos recorded at this stage of analysis helped depict the key concepts and processes that led to participants' openness. This method also aided in making comparisons and distinctions across all data. During this stage, I noted that some focused codes could be revised or grouped together to create codes with greater analytical reach. I, therefore, decided to create cluster lists and maps exploring the codes present in each participant's mind maps and memos. Clustering is a visual, creative and flexible technique that aids the researcher in understanding and organising the data. Cluster lists were created by noting the most frequent and significant initial codes and grouping them in loosely handwritten lists. Cluster maps were handwritten and started with a central idea (or focused code) and then branched off into related ideas (or initial codes). I returned to the data to look for initial codes closely related to the tentative focused codes developed from the mind maps and memos. Closely related initial codes were grouped to form more precise focused codes. This method was useful as it soon became possible to see how the initial codes formed around an emerging theme. For example, by using clustering, the theme of 'Engaging with the subject of death' began to present itself. Table 12 demonstrates the initial codes developed into the focused code 'Engaging with the subject of death'. This technique was used to revise focused codes to a greater level of theoretical abstraction and helped to depict the relationship between the initial and focused codes. 123 Table 12 - Codes Underpinning the Theme ‘Engaging with the Subject of Death’ Focused Code (Revised) Focused Code (Tentative) Initial Codes Engaging with the subject of death (revised focused code) This focused code would later become a component of the category ‘Exploring their relationship with death’. Learning about death (initial focused code) Reading about death and dying Reading books on religious beliefs and practices Reading books on the afterlife Reading books on spirituality Learning about near-death experiences Attending death-related conferences Reading books on near-death experiences Hearing about other people's near-death experiences Watching documentaries/TV programmes on death and dying Learning about how other cultures deal with death Completing the death doula training Although I began to use clustering during this stage of analysis, this technique was applied throughout the research process to develop the codes, categories and the resulting theory. For example, cluster lists were used to revise and refine focused codes, and cluster maps were used to raise focused codes to tentative theoretical categories. This technique aided in refining codes, categorising the data and showing the relationships among the codes and categories, ensuring that the analysis became progressively more abstract as the study progressed. After using the clustering technique to revise and develop the focused codes, I began to think about turning the focused codes into tentative categories. At this stage, I had some promising ideas about where the analysis was heading; however, in the journal, I noted that it was still unclear how the focused codes related to each other and the emerging theory as a whole. A more conceptual mind map was created to explore the relationships and connections between the focused codes. This helped me move from specific examples to more abstract theoretical concepts, which led to more openness. Mapping out the tentative focused codes from the initial analysis enabled me to establish the relationships among them. In doing so, I could see how the tentative categories came together to create a complete picture of the experience of becoming open to death and dying. Screenshots of the conceptual mind map can be seen in Figures 12, 13 and 14. The conceptual mind map created at 124 this stage of analysis can be viewed via the following link: https://www.mindmeister.com/map/1859215335?t=RjutAwXon6 Figure 12 – Conceptual Mind Map (Screenshot One) Figure 13 - Conceptual Mind Map (Screenshot Two) Figure 14 - Conceptual Mind Map (Screenshot Three) 125 I found this method a valuable tool for developing the properties of the tentative categories and establishing the connections between them. Creating the conceptual mind map helped to visually see the connections and relationships between the data, the subsequent categories and the developing grounded theory. For example, the conceptual mind map enabled me to see the connection between the focused codes ‘Experiencing death’ and ‘Recognising the benefits of thinking and talking about death and dying’. In addition, depicting how the initial codes related to the focused codes assisted in elevating the analysis to a higher level of abstraction. This type of diagramming enabled the emergence of what would go on to be the key processes and concepts that make up the substantive grounded theory. At this stage, I established nine focused codes to explore further. All focused codes were considered tentative categories. Table 13 demonstrates the focused codes derived from the analysis of the data collected in the initial sample. Table 13 - The Tentative Focused Codes Derived from the Initial Analysis Tentative Focused Codes Derived from the Initial Analysis Experiencing death Recognising the importance of thinking and talking about death and dying Contemplating beliefs Comforting beliefs Accepting/embracing death Changing comfortableness Exploring/addressing fears and beliefs around death and dying Learning about death Becoming more aware of death Encouraging others to actively think and openly talk about death and dying Once I had developed some tentative focused codes, I worked with what I found in them and the patterns they suggested. I then moved back and forth between initial codes and focused codes when new threads of analysis became apparent. 126 Several ideas for memos presented themselves from this stage of analysis. Advanced memos were then recorded to raise focused codes to tentative categories. Charmaz (2014) suggests that treating focused codes as tentative categories prompts the researcher to develop and scrutinise them. Advanced memos were recorded on all tentative categories to achieve the following: • Define the tentative categories • Develop the properties of the tentative category • Specify the conditions under which a category arose, persisted or changed • Show the relationships between categories Appendix 22 depicts an analytical memo recorded on the tentative category ‘Recognising the Benefits of thinking and talking about death and dying’. This tentative category would later be revised to the category, ‘Recognising the benefits of openness’. At this stage, using the revised, more conceptual focused codes, I created a timeline for all participants detailing the sequence of events, realisations and epiphany moments that led to more openness around death and dying. Continuously returning to the data ensured that the resulting grounded theory was "grounded" in the data. This stage enabled me to see how these individuals' openness towards death changed over time and helped to examine the properties further to create a dense analysis. During the creation of the timelines, five questions were proposed: • When, how, why, and under which conditions does this process change? • How do participants think, feel and act while involved in this process? • How do the components of this process relate to one another? • What shapes people’s perspectives of death and how does this lead to the phenomena in question? • What are the consequences of the process? The timelines served as route maps demonstrating how participants became open to death and dying. Timelines were printed, and the tentative categories identified from the initial analysis were highlighted on the document. This helped me to explore the tentative categories and aided in identifying the patterns or routes to openness between participants. Figure 15 shows the timelines created for the initial sixteen participants. 127 Creating the timelines prompted me to see that for most participants, a particular experience or turning point moment resulted in more openness towards death and dying. Therefore, this was something that I decided to explore further via theoretical sampling. In addition, the timelines encouraged me to continuously compare and contrast the data, consistent with the constant comparative method fundamental to all grounded theory studies. This assisted in comparing the data amongst participants and the resulting tentative categories. The connections and ideas identified during this stage were elaborated on in memos. In the journal, I note that at this stage, I started to become aware that the way participants talked and thought about death and dying varied between participants. This led to the development of the core category of this grounded theory, the concept of openness. The core concept of openness was derived from a memo recorded late in the analysis of the data obtained in the initial sample. The concept of openness was not raised in interviews; instead, interview questions were geared around how participants became able to think about and discuss such matters. During the initial interviews, I would directly ask participants how comfortable they felt thinking about and discussing issues relating to death and dying. Most participants stated that they were comfortable with the subject; however, two participants suggested that although they actively thought about and engaged in death-related conversations, they found this topic difficult to discuss and think about. For these participants, although they were uncomfortable, recognising the benefits of actively thinking and openly talking about death prompted them to engage with the subject to become more comfortable Figure 15 – Timelines Created for the Initial Sample 128 with the topic. Initially, I categorised segments of their data as ‘Wanting to become comfortable’ under the tentative category, ‘Changing comfortableness’. Looking back, this was a very naive assumption as being able does not equate to comfortableness. This prompted me to explore the idea of ableness vs comfortableness which led to the core concept of openness. Below is a reflexive memo that spurred my thinking about the concept of openness. Reflexive Memo: 15th of September 2020 At the start of this project, I naively assumed that some people are comfortable talking about death and dying. However, as the project has progressed it seems that this is not the case. Being able and finding these conversations comfortable are not the same. People are having death conversations but don’t find them comfortable. This has got me thinking, will death conversations ever feel comfortable? I’m not sure such a sensitive topic could ever lead to a comfortable conversation. Even when I think of my own experiences of talking about death with family members, it’s not comfortable even though there is a feeling of relief after. Maybe openness better describes what’s going on in the data. Participants suggest that although they are open to death-related conversations this does not mean that they are comfortable conversations to engage in. The memos recorded at this stage were all considered potential categories or sub-categories of the emerging grounded theory. Therefore, they needed to be developed in terms of their properties via theoretical sampling. After developing some tentative categories from the initial sample, I began to think about theoretical sampling. As stated in section 4.4, theoretical sampling was used to elaborate and refine categories in the emerging analysis by examining these ideas through further empirical enquiry (Charmaz, 2014). Collecting, coding and analysing the data from the initial sample guided how, where and from whom additional data should be gathered (Conlon et al., 2020). During this stage, I started to think about identifying new participants that could further develop the tentative categories based on the analysis of the data collected in the initial sample. In the journal, I noted that it would be beneficial to outline the possible questions and directions to peruse that would help in the development of the emerging theory. Using the mind maps, memos, diagrams and cluster lists created in the first stage of analysis, I mapped out potential questions about the tentative categories that would aid in the development of the emerging grounded theory. The memos recorded at this stage of analysis enabled me to identify gaps in the data and consider possible questions and directions to peruse further. Below is a memo recorded on the category ‘Death-related experiences’ outlining questions for further empirical enquiry. Figure 16 – Memo on the Core Category ‘Openness’ 129 During this stage of analysis, I noted that I needed to gather further data that focused on the emerging categories and their properties. Therefore, theoretical sampling was used to explicate the properties of the tentative categories and strengthen the emerging theory. I decided to seek out participants whose experiences were relevant to or could expand on the tentative categories from the initial sample. Reflecting on the ideas produced from the initial sample, theoretical sampling was used to establish if these ideas would be challenged, supported or elaborated on. The properties and dimensions of two categories were explored further via theoretical sampling, ‘Death-related experiences’ and ‘Exploring their relationship with death’. Other categories were not explored further via theoretical sampling as sufficient data was gathered from the initial sample to define the properties and characteristics of the categories. During the first stage of analysis, it became apparent that most participants could identify a particular experience that acted as a turning point where their openness to thinking and talking about death and dying started to change; however, these experiences varied. Therefore, exploring this notion of a turning point moment via theoretical sampling was the next step in developing the grounded theory. Fifteen participants were recruited as part of this stage of theoretical sampling. Participants were asked to identify a particular turning point moment or experience that prompted them to become more open to thinking and talking about death and dying. This was explored further Memo Recorded on the Category ‘Death-related Experiences’ Outlining Questions for Further Empirical Enquiry Experiences Experiences of death seem important to the process of becoming open. Most participants have had experiences which has led them to become comfortable thinking/talking about death and dying. These experiences include spiritual experiences, near-death experiences, the death of others, being faced with their own potential death, experiences within work (nursing/doctor) and the bereavement of others (i.e., complicated bereavement of friends/ex-partners). There is no conformity on the type of experience that they’ve had. Experiences seem to have prompted participants to start thinking about death in general including their mortality. ● Does it matter what type of experience people have? Does it depend on the closeness to that person? Does it depend on people’s proximity to death? ● Does it depend on a positive or negative experience? ● Within work – is there a specific experience within work that enabled people to feel more comfortable? (Two participants suggest that they have witnessed lots of death, and it’s comforting to know that most people die very peacefully) ● Does people’s exposure to death affect their openness? ● Does age affect people’s openness to thinking/talking about death and dying? – The older you are the more death you have experienced (however, this is not always the case). Figure 17 - Memo Recorded on the Category ‘Death-related Experiences’ Outlining Questions for Further Empirical Enquiry 130 by examining written accounts of people’s experiences or turning point moments that led to more openness. Data analysis began after receiving the first written account (see Appendix 23 for an example of a written account). As with the initial data collection and analysis, the data were coded in two stages: initial and focused coding. Written accounts were printed, and initial line-by-line coding was completed by hand. Initial codes were written in the margin next to each line on the paper copy of each written account. Initial ideas and potential focused codes were recorded on a separate piece of paper. Next, I completed the focused coding of all data. After coding the new data, I compared the codes with each other, earlier codes (from the initial sample), and the tentative categories. Like the initial sample, memos were recorded in a narrative style detailing the most frequent and significant codes from the analysis. Focused codes were then highlighted in the printed document. Tentative cluster lists and maps were then created and added to as the data was gathered. After completing the initial and focused coding of the written accounts, all data (including the initial sample) were revisited in its entirety to explore the similarities and differences amongst participants. The tentative categories developed from the first stage of data collection and analysis were largely supported by the data acquired through this stage of theoretical sampling. After receiving the written accounts, it became apparent that for some participants it was a combination of multiple experiences that led to more openness around death and dying. Additionally, no new types of experience were identified; all experiences were death related. Therefore, I categorised the data as death-related experiences rather than turning point moments. Analysis of the data acquired through this stage of theoretical sampling revealed a new death-related experience that led to more openness, ‘Experiencing the death of a pet’. However, this experience was closely related to the subcategory, ‘Experiencing the death of a loved one,’ and was therefore incorporated into the subcategory, ‘Experiencing the death of a loved one’. By looking at data specifically relating to people’s turning point moments, I was able to elaborate on and define the properties of the first major category (Death-related experiences). The data gathered during this stage, proved valuable as I was enabled to learn more about how death-related experiences plays a part in participants’ overall experience of becoming open to death and dying. After analysing the data gathered through theoretical sampling, a focused code that I had initially overlooked in the initial sample, 'Recognising death as taboo', kept appearing in the data. I noted that this code was frequently mentioned in the initial sample; however, I did not raise this code to a tentative category as it did not seem significant in the process of becoming open to death and dying. Although it was frequently mentioned, it did not contribute towards participants' initial openness 131 towards the subject; therefore, I did not see its relevance to the overall developing theory. This stresses the importance of Charmaz's emphasis on continuously interacting with the data. Charmaz states that the constant comparative method used in grounded theory research enables the researcher to enter an "interactive space" (Charmaz, 2014, p. 115). This interactive space helps to challenge earlier ideas and preconceptions about the data. The data was then re-examined to explore the significance of this code in relation to the developing theory. By interacting with the data, I came to see these data in a new light. Although the code 'Recognising death as taboo' provided a descriptive handle on the data fragments, the code did not capture the implicit meanings behind participants' statements. Instead of recognising that death is taboo, the data indicated that the belief that death is taboo influenced participants' engagement in such discussions. Therefore, it was decided that the code was significant and should be included in the overall theoretical model. The code was then revised to 'Influence of perceived societal beliefs' which also explained a number of the earlier codes and the statements that those codes corresponded to. The second category explored further via theoretical sampling was 'Exploring their relationship with death'. After exploring how the focused codes related to each other, via advanced memo writing, the focused codes 'Contemplating beliefs', 'Comforting beliefs', 'Exploring/addressing fears and beliefs around death and dying', and 'Learning about death' were integrated into the category 'Exploring their relationship with death'. Exploring their relationship with death was an in vivo code taken from the initial sample. Three participants in the initial sample referred to the term 'Exploring their relationship with death' when describing how they became more open to the subject. For these participants, exploring their relationship with death consisted of reflecting on previous death-related experiences and exploring perceptions, fears and beliefs around death and dying. Other participants' actions and statements suggested that they also began to explore their relationship with death, although they did not directly refer to this term. Charmaz (2014) states that in vivo codes are useful in preserving participants' meanings of their actions and views; however, they need to be subjected to analytical scrutiny. Therefore, the concept of exploring their relationship with death was examined via theoretical sampling. The data acquired through this stage of theoretical sampling were analysed in the same way as those obtained through theoretical sampling (stage one). The data collected as part of theoretical sampling helped to define the properties and establish the relationships between the category, 'Exploring their relationship with death' and the core concept of openness. The data gathered enabled me to explore the following: • What prompted individuals to start exploring their relationship with death? 132 • How have individuals explored their relationship with death? • How does this process develop and change overtime? • What are the consequences of exploring their relationship with death? • How has exploring their relationship with death led to more openness? • What is the relationship between exploring their relationship with death and the core concept of openness? This enabled me to create an analytical definition and explanation of the category (Exploring their relationship with death) and determine the relationship between its properties and the core concept of openness. Like the first stage of theoretical sampling, the focused codes generated from the second stage of theoretical sampling supported the tentative categories developed in the initial analysis. Moreover, the data collected as part of both stages of theoretical sampling identified and illuminated other categories in the developing theory. Data were simultaneously collected and analysed until theoretical saturation was achieved. As stated in section 4.5, categories were considered saturated when gathering new data no longer revealed new properties or theoretical insights of the key theoretical categories (Strauss & Corbin, 1998). In order to determine if theoretical saturation had been achieved, the theoretical categories were tested against the data in its entirety. Looking across all data, the four theoretical categories were determined robust enough to stand as theoretically relevant. As no new theoretical insights were gathered after analysing the data acquired through theoretical sampling, and the dimensions, properties and relationship between the categories had been established, the categories were considered saturated with data; thus, theoretical saturation was achieved. Table 14 demonstrates how the focused codes produced in the initial analysis were revised and developed into the theoretical categories and subcategories of the final theoretical model. 133 Table 14 - The Revised Theoretical Categories and Subcategories in the Final Theoretical Model Tentative Categories Derived from the Initial Analysis Revised Categories in the Final Analysis Experiencing death Death-related experiences (main category in the theoretical model) Recognising the importance of thinking and talking about death and dying Recognising the benefits of openness (main category in the theoretical model) Exploring/addressing fears and beliefs around death and dying Exploring their relationship with death (main category in the theoretical model) Contemplating beliefs Exploring after-death beliefs (Subcategory of the main category ‘Exploring their relationship with death’) Comforting beliefs The focused code, ‘Comforting beliefs’ was not robust enough to stand on its own, and, therefore, was interpreted as part of the subcategory ‘Exploring after-death beliefs’ (Subcategory of the main category ‘Exploring their relationship with death’) Learning about death Engaging with death (Promoting more death awareness) (Subcategory of the main category ‘Exploring their relationship with death’) Accepting/embracing death Enabling individuals to live life more meaningfully (Subcategory of the main category ‘Exploring their relationship with death’) Although this subcategory did not contribute to participants initial openness, it is explored as a consequence of exploring their relationship with death and plays a part in continued openness towards the subject. Becoming more aware of death Much of the data relating to ‘Becoming more aware of death’ directly related to the categories ‘Death-related experiences’ and ‘Exploring their relationship with death’. Therefore, it was interpreted as part of these categories. Changing comfortableness Conditions and context for openness (main category in the theoretical model) This category is not part of the process behind how individuals become open to thinking and talking about death and dying, however, it is an important concept that informs how the core category of openness is experienced. Promoting others to actively think and openly talk about death and dying Promoting openness (subcategory of the category ‘Conditions and context for openness’) The systematic application of the grounded theory methods mentioned above enabled the emergence of the core processes and concepts that were developed into the final substantive 134 grounded theory. These theoretical concepts emerged during the constant process of going back and forth between progressively more focused data and successively more abstract conceptualisations of those data (Charmaz, 2014). This resulted in a constructivist grounded theory that explores the process behind how individuals begin to actively think and openly talk about death and dying. See Appendix 24 for an outline of the categories and sub-categories that form the grounded theory. Above I have described the procedures of analysis used in this grounded theory study, however, it is important to note that analysis within grounded theory is not linear. All codes, categories and sub-categories were continually examined and revised until a satisfactory level of theoretical abstraction was achieved. This continued throughout the research process including the creation of this thesis. Below I have outlined the data analysis procedures employed in this grounded theory study. Figure 18 - Data Analysis Procedures Employed in This Grounded Theory Study 135 4.8 Reflexivity Being reflexive is an integral part of conducting a qualitative study. Reflexivity enables the researcher to explore how their positions, interests and assumptions influence the research Charmaz (2014). With this in mind, I have been reflexive through the research process, including writing this thesis. A reflexivity journal was kept in order to document my ideas, thoughts, feelings and assumptions throughout all stages of the research process. I found writing in the journal to be extremely beneficial and cathartic, especially after interviews. 4.8.1 Methodological Reflections Initially, I intended to look at the potential barriers to thinking and talking about death and dying and how these barriers could be overcome. I aimed to do this by looking at individuals already open to thinking and talking about death and dying. However, after my progression monitoring (stage one), it became clear that the aim of the research was not focused on a specific social process (what if these individuals did not face any barriers?). Therefore, I decided to look specifically at the process behind how individuals become open to thinking and talking about death and dying. As explained in section 4.7.2, I found that the sensitive nature of the research sometimes hindered my analysis. During interviews, participants spoke about their deeply personal and often traumatic experiences of death, dying and bereavement; therefore, I found conducting the analysis challenging. I spent much time developing the initial and focused codes. I wanted to be sure that I fully captured my participants' experiences. Participants shared incredibly personal and emotional information, and I wanted to ensure I did their stories justice. This resulted in a lot of time being spent familiarising myself with the data, continuously going over all transcripts ensuring that I did not miss any important details. Although this aided in developing the grounded theory presented in this thesis, the emotionally charged nature of the research resulted in a lot of anxiety about the need to capture participants' experiences carefully. Moreover, reflecting on the research process led me to recognise the importance of scheduling plenty of time between interviews. Conducting the interviews in the middle of a pandemic was particularly challenging. I once conducted two interviews in one day. The interviews conducted in the initial sample were intense, and I felt emotionally drained by the end of the day. Therefore, I recommend that future research considers this. Reflexive thinking also helped with the emergence of the core category of my grounded theory, ‘Openness towards death’ as discussed in in section 4.7.2, 'Data analysis within this study'. 136 4.8.2 Personal Reflections Visser (2016) suggests a limit to which the researcher can prepare for such sensitive research. Therefore, it is vital to acknowledge the impact studying such a sensitive topic can have on the researcher. I acknowledged that reflexive thinking throughout the study was necessary for my wellbeing. Although I have focused on reflexivity in this chapter, I have weaved reflexivity throughout the thesis. Whilst conducting such sensitive research, it would be difficult for me not to become emotional about my participants; therefore, it was important to reflect on my emotional wellbeing throughout this study. The emotional labour involved in conducting a study such as this was particularly pertinent at the start of the COVID-19 pandemic. At the start of the pandemic, I felt as though death had taken over my life. During this time, I was writing a paper on the influence of COVID-19 on how people thought and talked about death and dying whilst also gathering data for the current study. Every day I was bombarded with daily death statistics, worrying about the health and wellbeing of family and friends whilst also conducting emotionally charged interviews. During this period, I found writing in the reflexive journal particularly cathartic as it allowed me to record my emotional responses. At the start of the research, I reflected on how my death-related experiences might influence the analysis. I experienced one significant death before conducting this study, my grandfather's death. Although this experience was emotionally challenging, as is most death-related experiences, his death was expected and not something I look back negatively on. I questioned how this might influence rapport with my participants. Participants in the study had experienced challenging and sometimes traumatic death-related experiences. Participants often asked what motivated me to study such a topic, and I sometimes felt as though they were disappointed that I had not had a similar experience. The first memo recorded detailed my observations at a local death positive festival (Pushing Up Daisies). At the Pushing Up Daisies festival, I noticed that the most popular talk was about pet grief. People seemed more open and willing to talk about their experiences of pet death. People were also more visibly upset when compared to other events. Moreover, the only time a participant became visibly upset during an interview was after thinking about the death of her childhood dog. This realisation led me to reflect on the significance of death-related experiences. What would be classed as a significant death experience? Does it depend on the closeness of the person/animal in question? Does it depend on the impact of that death experience on an individual's life? Although I have experienced the death of a loved one, what might be a significant experience to me may not feel significant to others. For example, I have experienced multiple pet deaths and believe these 137 experiences to be just as challenging as the death of a close individual. I believe my prior experiences of pet death enabled me to empathise with the participant and comfort her. Although most reflections were on the emotional labour involved in conducting a study such as this, it is essential to note that I also laughed with my participants and felt privileged to have the opportunity to learn something about their journey of becoming open to death. Moreover, the stories they shared have not only aided in the development of my grounded theory but will also stay with me forever. Throughout this research, I was often asked why I would want to study such a 'morbid' topic. Although some might question my motivations, conducting this research has given me a greater consideration and appreciation for life. 138 5 Chapter Five: Findings 5.1 Introduction In this chapter I will introduce the core category of this grounded theory, ‘Openness.’ The core concept of openness is explained along with the social processes at work within the core category. Following this, I will present the findings and provide an explanation of the theoretical model developed from this grounded theory study. 5.2 The Core Concept of Openness ‘Actively Thinking and Openly Talking’ The core category of this grounded theory is the concept of openness towards death and dying. The concept of openness is defined as actively thinking and openly talking about death and dying. Actively thinking and openly talking are terms employed to denote what happens when individuals become more open to death and dying. It was decided that openness towards death would include both actively thinking and openly talking about the subject, as people must have first thought about death to talk about it openly. For example, thinking about death enables us to talk about it and talking about death can change how we think about it. Actively thinking is defined as thinking about and engaging in conscious, focused thought on the subject of death and dying. Distinct from passive thinking, active thinking involves thinking about death on a deeper level. Openly talking is defined as verbally expressing our thoughts, feelings and ideas about death and dying without reservation. Four types of death-related conversations were identified within the data: talking about practically planning for death, talking about bereavement, talking about fears, and talking about spirituality, philosophy and religion. Participants also mentioned these same topics when actively thinking about death and dying. The data gathered from interviews and written accounts suggested that death-related experiences, recognising the benefits of thinking and talking about death and dying, and exploring their relationship with death led to more openness around death. Although these processes led to more openness, the meaning of openness varied between participants. Additionally, some participants were more open to thinking and talking about some aspects of death than others. Moreover, it became apparent that perceived societal beliefs around talking about death influenced participants' openness towards the subject. 139 The data showed several ways that participants' openness towards thinking and talking about death and dying was experienced. A number of social processes and concepts were evident as openness was reached. These processes and concepts are identified as 'Death-related experiences,' 'Recognising the benefits of openness', and 'Exploring their relationship with death'. These categories are integral to how the core category of openness around death and dying is reached. Figure 19 was generated to illustrate the conceptual understanding of how these categories led to more openness around death and dying. Each category is considered in terms of its properties, dimensions and variance. For example, the category Death-related experiences' is characterised by the subcategories ‘Spiritual experiences,’ ‘Near-death experiences,’ ‘Experiences within work’, ‘Being faced with their own potential death’, ‘Being faced with the potential death of others’, ‘Experiencing the death of a loved one’, and ‘Experiencing the complicated bereavements of others’. Figure 19 – Diagram Demonstrating the Relationship Between the Major Categories and the Core Concept of Openness Death-related experiences Recognising the benefits of thinking and talking about death and dying Exploring their relationship with death Openness around thinking and talking about death and dyingConditions and context for openness Continued openness 140 5.3 Death-related Experiences The first category that plays a crucial role in openness towards death and dying is ‘Death-related experiences.’ This category captures how participants’ death-related experiences led to more openness around the subject. Seven death-related experiences were identified ‘Spiritual experiences,’ ‘Near-death experiences,’ ‘Experiences within work’, ‘Being faced with their own potential death’, ‘Being faced with the potential death of others’, ‘Experiencing the death of a loved one’, and ‘Experiencing the complicated bereavements of others’. For most participants, their death-related experiences have led them to recognise the benefits of death-related conversations and/or to start exploring their relationship with death; this has then prompted them to start actively thinking and openly talking about death and dying. All participants in the initial sample discussed previous death-related experiences during their interviews. However, some participants could identify a specific experience that acted as a turning point moment where they started to actively think and openly talk about death and dying (P03, P05, P06, P08, P11, P12, P14, P16). However, there was no unanimity about the type of death-related experience participants had. For the remaining eight participants, although their death-related experiences have contributed to their openness around the subject, there was not a specific experience that led them to actively think and openly talk about death and dying, instead it was a combination of multiple experiences (P01, P02, P04, P07, P09, P10, P13, P15). Death-related experiences were a significant factor in how these participants became open to thinking and talking about death and dying, as shown in the findings from the first stage of data collection and analysis. The notion of such experiences as a turning point was then explored further by theoretical sampling. Participants were asked to identify a particular turning point or experience that prompted openness about death and dying; one new type of experience was identified; ‘Experiencing the death of a pet’ (P19). Although participants were asked to identify a specific experience or turning point moment, similar to those in the initial sample, some participants stated that it was a combination of multiple experiences that led to more openness around thinking and talking about death and dying (P17, P20, P24, P27, P28, P30). In addition, participants recruited in the second stage of theoretical sampling (‘Exploring their relationship with death’) also provided examples of specific death-related experiences that contributed to their openness around thinking and talking about death and dying (P32, P34, P36, P37, P40). In total thirty-three participants suggested that their death-related experiences had contributed to more openness around death and dying. These experiences held more significance than previous death-related experiences. There was no unanimity on whether a positive or negative death-related experience contributed towards more openness around the subject. For example, some participants 141 became more open to thinking and talking about death and dying after having a positive experience of death (experiencing a peaceful death, experiencing a ‘good death’, being present at the death, being more involved with the death (having an active role in the death (pre and post), sensing loved ones after death, recognising the benefits of openness in enabling individuals to have a ‘good’ death). For others, a negative death-related experience led to more openness (experiencing a sudden unexpected death, being faced with their own potential death, recognising the benefits of pre-emptively engaging in death-related conversations prompted by a negative death-related experience). In addition, for some participants, their death-related experiences held more significance because they had a closer relationship to the deceased, unlike previous deaths that have occurred. Below are the experiences described by participants and how these experiences contributed to them becoming open to actively thinking and openly talking about death and dying. 5.3.1 Spiritual Experiences Eight participants stated that their spiritual experiences had prompted them to actively think and openly talk about death and dying. For the purpose of this study, a spiritual experience will be defined as a transcendent experience that cannot be logically explained. In the initial sample, four participants stated that their spiritual experiences contributed to them becoming more open to the topic (P01, P10, P12, P16). Similar experiences were described by four participants recruited as part of theoretical sampling (P24, P30, P34, P36). Some participants have experienced a number of spiritual experiences (P01, P10, P16, P24, P36), whereas other participants have experienced only one type of spiritual experience (P01, P12, P30, P34); however, all participants described similar outcomes (their spiritual experiences either prompted or reinforced their belief in the afterlife). Most participants stated that encountering a spiritual experience directly led to the belief in an afterlife. For these participants, their spiritual experiences comfort them when thinking and talking about death and dying because they no longer fear death. Participants gave one reason for no longer fearing death: belief in the afterlife. All participants stated that their spiritual experiences brought them comfort and reassurance when thinking and talking about death and dying. Participants described three types of spiritual experiences: ● Sensing loved ones after death (P10, P16, P24, P30) ● Receiving messages (P01, P10, P12, P16, P24, P34, P36) ● Seeing apparitions (P10, P36) 142 For these participants, their spiritual experiences strengthen their spiritual beliefs, enabling them to think and talk about death and dying openly. How spiritual experiences led to more openness around death and dying is illustrated in Figure 20. 5.3.1.1 Sensing Loved Ones after Death For four participants (P10, P16, P24, P30), sensing loved ones after death has contributed to them becoming more open to thinking and talking about death and dying because they believe that “death is not the end”, and they will see their loved ones again. For these participants sensing loved ones directly led to a belief in the afterlife. For example, participant twenty-four became more open to thinking and talking about death and dying after her partner’s death, as she could sense him around her. At the time, she did not hold any beliefs in the afterlife. She tried to revisit her Christian beliefs, but this posed more questions than answers. If my partner had gone to Heaven, why was I so aware of his presence most waking moments. I used to talk to him in my mind although I couldn't see him. Being able to sense the presence of her late partner prompted her to explore her after-death beliefs. She started to attend the local spiritualist church. Learning about spiritualism helped her to make sense of her experience. I didn't get a message, but it made a lot more sense and as I began to attend more and more, I made friends and came to understand that my partner was right with me. This led her to become more open to thinking and talking about death and dying because she no longer fears death, as death is not final: I now have no fear of death because I don't believe it's final, it's just a doorway that we have to pass through in order to accomplish the further development of our immortal soul. Figure 20 - Illustrating the Influence of Spiritual Experiences on Participant’s Openness 143 Similarly, participant ten started to sense her father after his death. Her father typically came through to her in times of hardship or important dates such as Christmas and anniversaries. … and then the Christmas after he died, I got such a sense of him being there and of him saying to me, ‘life does not need to be a struggle.’ Sensing her father after his death reinforced her spiritual after-death beliefs. As a result, she feels comfortable openly talking and actively thinking about death because her spiritual beliefs in the afterlife are so strong: I believe that… I think my spiritual beliefs are so sort of strong that actually, yeah, I don’t see it [death] as a problem. 5.3.1.2 Receiving Messages For seven participants (P01, P10, P12, P16, P24, P34, P36), receiving messages from loved ones led to more openness around death and dying. Like sensing loved ones after death, receiving messages from loved ones strengthened their belief in the afterlife and lessened their fear of death. Participant one described a message he received from his father: So, I like to back horses… when I picked a horse out, I'd circle the horse's number, but my dad used to underline the horse…anyway, he always said to me don't worry if you see a ghost, don't worry just say you're welcome…and I never thought a lot about it. Anyway, one day, this was about a month or two after he died, I bought a racing paper, brand new from the newsagent. I took it home and I was glancing through it, and I saw this horse underlined, already underlined. Do you know what they called the horse? You're welcome… and I backed it and it won. Isn't that strange? This participant was particularly afraid of death in his twenties, especially the fear of the unknown. However, after the death of his parents and receiving these messages, he no longer fears death as he believes that he will see his parents again in the afterlife: And, and the more I get these messages you know every so often it gives you that greater comfort really. Six participants (P10, P12, P16, P24, P34, P36) stated that experiencing two-way communication between themselves and the deceased prompted them to become open to thinking and talking about death and dying. Two-way communication includes direct communication with the deceased or second-hand communication through mediums. 144 For example, participant twelve became more open to thinking and talking about death and dying after visiting a medium. The medium was able to communicate with the participant’s father. Her father did not believe in mediums or the afterlife; therefore, she believes that for him to come through in a reading strengthens her belief in the spiritual world. … my father’s always come through, and he’s always been, “oh, bloody stupid stuff it is that. Don’t believe in it,” and he was so adamant, I think it’s men, I think they just don’t, they don’t believe in it. Erm, he always comes through. So, for someone like my dad to come through there must be something there. So, it gives you some kind of reassurance that even though you’re no longer there in body, you’re there in spirit to support and guide people. This brings her comfort, as she no longer fears death as “our spirit will go on to the next life.” She stated: So, it gives you some kind of reassurance that even though you’re no longer there in body you’re there in spirit to support and guide people if they want to believe that. In addition, participant thirty-four explained how visiting mediums had reinforced her belief in the afterlife. This participant provided examples of her experiences with mediums during her interview to provide “proof” of her after-death beliefs. For example, she stated: “I’ve had proof of that [psychic abilities] as well because I've gone to many psychics.” She recalled one experience where her husband came through on a reading: I went to see him [medium], and I sat at the front, erm, and he picked me out and he said, err, gosh, ‘there’s this guy here and he's really anxious to come through, have you lost somebody?’ And I said, ‘yes.’ Erm, he said. ‘it’s your husband.’ Now, I didn’t want to give him any indication. Anyway, err, he said, ‘oh, goodness,’ he said, ‘boy did he like his boo… did he like his shoes? He’s showing me….’ Well, my husband had a thing for nice shoes. Erm, he was really always proud of his shoes, you know (laughs). He always had them polished up and that. And he said, erm, erm, ‘yeah, he’s… he can see you and, erm, he's fine, erm, and he liked… something else he always had a nice one on and that was a watch.’ Well, he did. he loved his watches but other than… no jewellery other than that. Erm, and I couldn't answer because by this time I was in tears and then he moved on to somebody else and then he came back to me and he said, ‘do you know he’s still trying to get through. I told him he's been through, and he wants to come again.’ I thought, oh, my god (laughs). 145 This participant finds her strong spiritual belief in the after-life comforting when contemplating death. Erm but dying itself I'm not afraid of because I just… to be quite truthful, err, (laughs) I think it's a very wonderful thing to look forward to. Another example was provided by participant sixteen. Hours after her mother’s death, she witnessed her daughter communicating with her mother. Her daughter was only three at the time and had not been told about her grandmother’s death. So, when she passed away, erm, that evening, erm, she passed away in the early hours of (audio goes). When that night, we went to bed, erm, my daughter was still in her cot bed in our bedroom. Erm, and chatting away, erm, and, you know, baby chatter. But erm, and then, and then she was saying, ‘oh, hello nana,’ and she was talking to my mum. And, you know, but obviously, there was no… I woke up, and I was watching her, and she was chatting, you know, she was just looking and looking at somebody obviously (inaudible). Erm, chatting away, erm, and going no nana… yeah, I’m going to be fine, nana and, you know, I love you too. And all this like, obviously, answering questions. Do you know what I mean? Erm, and I just sat there, and I was just like, oh, my god, this is so strange, do you know what I mean? She found this experience extremely comforting and believes that her mother wanted to say goodbye: … when she [her deceased mother] came to see my daughter, erm, that actually made me feel more settled. It’s almost like my mum was trying to speak to me through my daughter. For this participant, her spiritual experiences and belief in the afterlife led her to no longer fear death, as death is not the end. 5.3.1.3 Seeing Apparitions For two participants, the experience of seeing an apparition played an important part in their openness to death and dying (P10, P36). Participant thirty-six was first prompted to start exploring her after-death beliefs after encountering an apparition. Since then, she started to explore spiritualism, attended the spiritualist church, and encountered many more apparitions. Seeing and communicating with the deceased and exploring her after-death beliefs enabled her to talk openly about death and dying. She stated: Having been an intermediary between the living and the dead for so many decades as a speaker and demonstrator at Spiritualist churches etc I have no problem talking about death. 146 One significant experience was seeing her son the night he died: The night he died I spent with my daughter in an inn, her husband and two children were in an adjoining room. In the quiet of the night, I became aware of an old open-back double decker bus crammed with angels in a state of great excitement as they waited for him to arrive and drive the bus away. I was aware of their silver-gold wings, like filigree. Then the excitement changed to an outpouring of love as they welcomed this “reunion” with immense love, and reverence, for a "great soul" – their words. Her strong after-death beliefs are continuously reinforced by her spiritual experiences, resulting in more openness around death and dying: Since then, we [herself and her husband] have had decades of experiences with ghosts, spirits, and spiritual healing. Consequently, we know, not believe but know, that death is not the end. 5.3.2 Near-death Experiences (NDEs) For eight participants (P10, P16, P17, P22, P23, P24, P32, P37), having a near-death experience directly impacted their openness to thinking and talking about death and dying. Similar to spiritual experiences, participants were not frightened by their NDEs; instead, they found them reassuring and comforting. All participants described similar experiences and outcomes. All participants described seeing a tunnel of light/vortex/arc, seeing deceased loved ones, feeling a sense of calm and unity with the universe, and not wanting to return. All participants' near-death experiences either encouraged or reinforced their belief in the afterlife. This removed any fear of death, leading them to become open to thinking and talking about it. How NDEs led to more openness around death and dying is illustrated in Figure 21. Figure 21 – Illustrating the Influence of NDEs on Participant’s Openness 147 Participants described their NDEs as extremely meaningful and significant experiences. Below I have outlined some examples of participants' accounts of their NDEs and how their experiences contributed to more openness. Participant sixteen was involved in a car accident where she had a near-death/out-of-body experience. She was looking down at herself and could see everything that was going on around her, including a man in the next bed: Erm, and then I was saying to people about, you know, about this man being next door to me. I said to one of the nurses, erm, and she said, “well, well, yes, he was, but how did you know he was there because there was a curtain?” And I said, well, I could see him. Do you know what I mean? Erm, and what was it… what was wrong with my blood pressure, and all this. And they said, “well, no, but you couldn't have seen him because you, you know, your eyes were bandaged,” and I said, “no, I could see him and why was he in the same room as me” (laughs). This experience profoundly impacted this participant's openness towards death and dying. Her NDE reinforced her belief in the afterlife (she has previously encountered other spiritual experiences – communicating with the deceased) which alleviated her death-related fears. … I haven't got the fear of it that I had before, you know? And, like when, like when my husband says that, you know, erm, there isn't anything else. I actually think, no, no, I’m sure there is because I've had like these two experiences. Similarly, participant ten has had numerous spiritual experiences (sensing loved ones after death, communicating with the deceased, seeing apparitions (dreams), however, one particular experience significantly impacted her openness to thinking and talking about death and dying: seeing her grandmother in the afterlife. Although she explains that this was a dream, it felt more than a dream to her. She describes this experience as a near-death/out-of-body experience. I had this kind of like Alice in Wonderland the rabbit down the, down the tunnel, but it was all white. The most amazing sound that I’ve ever heard, I couldn’t, couldn’t say it sounded like, it was music, but it wasn’t like any music I’d ever heard. And I got to this place where my grandmother was, and I was just sort of sent away again. During her NDE, she spoke to her deceased grandmother. Her grandmother’s words have brought her immense comfort when thinking and talking about death and dying. 148 …she was telling me; it was her telling me that death’s okay and, you know, go back, you’re fine. Death’s like… death’s okay, it’s beautiful. This experience reinforced her belief in the afterlife. In addition, her grandmother’s reassuring words alleviated her death-related fears and anxieties; consequently, she no longer fears death. Similarly, participant twenty-three described her near-death experience: I remember some sort of tunnel, nothing special just a normal arc above me. I felt lovely peaceful and safe wanted to stay! My dad was close next to me full of joy, my grandma, and people all around the bed. My godfather at the bottom. I understood ' he's gone to find out and saw my grandad walking toward a door lit up inside, he turned around and shook his head and I was sucked away swiftly. I was sad and disappointed… Like other participants, participant twenty-three’s NDE lessened her fear of death which promoted more openness around the subject. So, I've always said that dying 'feels nice' and is nothing to be afraid of. Participant seventeen also described a similar experience: My near-death experience brought me much peace and a realisation that everything and everyone is connected and made out of the same stuff... it appeared as some sort of light... Pure love. I felt more certain about this than about anything before or since. That we are in essence all one. Her NDE profoundly impacted her beliefs and views towards death and dying. Her fear of death lessened, contributing to more openness around death and dying. In addition, a further three participants in the initial sample encountered a NDE (P04, P08, P12). Participants four and eight stated that although their NDE reduced fears around death and dying, it did not contribute to more openness. These participants described their NDE as an intense out-of-body experience; however, they rationalised their experiences rather than viewing them as a transcendent spiritual experience. For example, participant eight stated: That was quite extraordinary. I mean I tell you, you… that hallucinations were mind-blowing, the whole thing, but that constant theme and I remember a lot of it very very vividly. It was a combination of the coma and some incredibly strong opiates, that aren’t, aren’t generally open for, open for the public, I believe. I think horses and elephants have access to them occasionally but not humans. Erm, and there was that… that’s the only thing that I could, you know, this thing about, you… because a lot of people, you hear people say, people talk about 149 you're fighting against this, and you think that’s a ridiculous thing to say but there was something. Something was subconsciously going on up there about it. Additionally, participant twelve’s near-death experience occurred during childhood (age four). Her NDE did not impact her openness, as she believed that she was too young to understand the experience fully. 5.3.3 Experiences at Work Seven participants suggested that their experiences at work have contributed to more openness around death and dying. In the initial sample, four participants stated that their experiences at work had contributed to them starting to actively think and openly talk about death and dying (P02, P04, P07, P09). Similar experiences were identified after analysing the data acquired through theoretical sampling (P20, P28, P31). Participants describe various reasons as to why their experiences at work have contributed to more openness around the subject: becoming more familiar with death/being exposed to death, encouraging more death awareness, recognising that death can be peaceful, recognising the benefits of thinking and talking about death and dying (within a work context), and being exposed to how other cultures deal with death. How experiences at work influenced participants’ openness is illustrated in Figure 22. Experiences at work Recognising the benefits of thinking and talking about death and dyingExploring their relationship with death and dying Promoting more openness around death and dyingBecoming more familiar with death/being exposed to death Encouraging more death-awareness Changing views around death -Recognising that death can be peaceful Being exposed to how other cultures deal with death Recognising the importance of death-related conversation (within work) Exploring after-death beliefs Embracing death enables you to live life more meaningfully Figure 22 – Illustrating the Influence of Experiences Within Work on Participant’s Openness 150 For example, participant two stated that he started to think more about death and dying after attending medical school. He had to face dying patients and, as a result, became more familiar with death. He suggested that this has given him a “professional hardening” when thinking and talking about death and dying. Participant seven suggested that her job as an archaeologist helped her to become more open to death and dying as it is something that they study, think and talk about. …my background as an archaeologist helps …it’s something that we study as archaeologists. It’s something that we think about, we talk about. We work with dead people, you know, we excavate skeletons and, erm… I worked on a site, erm, for quite a number of years, and we had quite, err, err, a lot of human remains from that site, and I processed all of those, and so, kind of, you know, I've spent time handling human remains. Participant nine was a community matron and death doula. She had seen and experienced a lot of death throughout her career. She had sat with dying patients, laid them out and talked to their family and friends. She believes that working with death prompts her to actively think and openly talk about it: I think lots of people go through and don’t think about death and I think in nursing I’ve seen a lot of dead people and I’ve laid people out and I’ve sat with dying people and talked to their families and I’ve been at quite emotional deaths. Especially in the community when we’re there supporting family. Erm, so, it’s always been with me really. Working with dying patients changed the way she views death, and she now finds it comforting to know that most people die very peacefully. I think what’s comforting is that most people die very peacefully, often without family realising that they’ve taken that, erm… they’ve breathed out and then there isn’t another breath in, but family are sometimes all talking quietly, and they can suddenly see that the persons died, and they haven’t realised because it’s so peaceful. Erm, I think the majority of people do die that way, very, very peacefully. In addition, she stated that she has become more comfortable with death-related conversations after completing the death doula training. She believes this is because you must “go deep within about your relationship with death.” This participant feels very passionate about talking about death and dying and strongly believes in the importance of death-related conversations, particularly around end-of-life care. 151 Participant four had worked in a death-related field all her life (counselling/end-of-life doula/working in psychiatry/nursing assistant/care worker/working in the funeral profession). She described how seeing and being exposed to death at work enabled her to become more open to it. Like participant nine, she believed that being exposed to death through work contributed to more openness around the subject. Both participants (P04, P09) believed that being regularly exposed to death raised their death awareness. For example, participant four stated: I've worked with it [death] all my life, for me is like breathing, but most people haven’t done that… Working in a death-related field led her to recognise the benefits of death-related conversations both professionally and personally. As a result, she tries to facilitate/open up death conversations regularly and has talked about her end-of-life wishes with family and friends. Like participant nine, she also completed the death doula training. She stated that becoming more aware of death via exploring her relationship with it has reduced her fears around the subject. She also suggested that the more she understands her relationship with death, the more open she is to talk about death and dying with others. Similarly, participant twenty-eight stated that his openness towards thinking and talking about death and dying started to change after becoming a funeral director. He explained how working full-time in the death industry and being faced with death every day has encouraged him to become more open to the subject (his openness towards talking about death was a gradual change). Consequently, becoming more open to death has encouraged him to live life more meaningfully: I became more alive as I faced death every day. Time is a gift not to be wasted but enjoyed. Too many people have too many regrets. Participant twenty’s openness towards death and dying changed after travelling for work. He explained how on his travels, he encountered different religions and attitudes towards death contradictory to how death is perceived within the UK. Whilst working in Nigeria, he encountered a road accident: The damage was extensive, and several dead bodies were strewn around the crash site. The vehicles and bodies had been pushed just off of the road to the patch of sand at the side. Each following day I passed that crash site. The bodies remained and were slowly decaying in the hot sun and also being eaten by vultures. … Dead bodies were useless! What was death? I suppose that my travels effectively separated me from the combined thinking of the society 152 into which I was born. I no longer understood how death was viewed by my fellow countrymen and women. His travels prompted him to “embark on a journey of thought” about death via reading and actively thinking about religion and what happens after death. This prompted him to want to talk more openly about death. Similar to other participants, his “journey of thought” led him to recognise the benefits of death-related conversations: I am convinced that we should feel free to openly discuss all aspects of life and of death without the present inhibitions and taboos. It would in my opinion lead towards a far healthier and more compassionate society. For participant twenty, encountering different attitudes towards death prompted him to explore his ideas, beliefs and relationship with death, enabling him to become more open to thinking and talking about it. His change in openness was gradual as his thoughts developed over time. He suggested that if he had not travelled and come across different cultures and religions, he would have never changed his attitudes around death: Had I never travelled and actually worked for long periods in other countries and cultures in such a way that it was impossible not to actually confront such different attitudes, I doubt if I would ever have challenged the social attitudes that I was infused with as a child… 5.3.4 Being Faced with Their Own Potential Death For four participants, facing their own potential death prompted more openness around the subject (P03, P08, P15, P27). A similar experience was identified after analysing the data acquired through theoretical sampling (P27). Participants stated that they were “forced” to confront their mortality after a cancer diagnosis. Confronting their mortality led them to recognise the benefits of openness towards death and encouraged some to start exploring their relationship with death. This is illustrated in Figure 23. 153 For example, participant three described how confronting her own mortality after her cancer diagnosis, started her on a journey to become more open to thinking and talking about death and dying. Thinking about her own mortality led her to recognise the benefits of openness towards death, prompting her to start exploring her relationship with death (exploring her fears and beliefs around death and dying). She explained how exploring her fears and following a spiritual path (the Buddhist principle of accepting what is) contributed to her becoming more open to the subject. This prompted her to recognise the benefits of accepting death and engaging in death-related conversations. Becoming more open to death and dying encouraged her to start helping others to become more open to the subject by running death cafes, death positive festivals and starting a threshold choir. Similarly, participant eight’s cancer diagnosis prompted him to start thinking about practically preparing for death with others in mind. His change in openness was sudden; before his diagnosis, he had never had a strong thought about his mortality. For this participant, thinking about his own potential death opened death-related conversations with friends and family, as it has prompted him to recognise the benefits of such conversations. Similarly, after participant twenty-seven was diagnosed with thyroid cancer, she started to actively think about her own mortality. Her diagnosis prompted her to reflect on life, death and her previous death-related experiences. Her dad and sister both had ‘good’ deaths without fear or regret. Reflecting on this took away any fear that she had about her own death resulting in more open conversations around death and dying with family and friends. Exploring after death beliefs Exploring fears around death and dying Engaging with the subject of death • Recognising the importance of accepting death • Recognising the benefits of openness to enable individuals to have a ‘good death’ • Recognising the benefits of practically preparing for death (with others in mind) Reflecting on life, death and previous death-related experiences Figure 23 - Illustrating the Influence of Being Faced with Their Own Potential Death on Participant’s Openness Being faced with their own potential death Confronting their mortalityRecognising the benefits of actively thinking and openly talking about death and dyingExploring their relationship with deathPromoting more openness around death and dying154 5.3.5 Being Faced with the Potential Death of Others One participant stated that being faced with the potential death of others had led to more openness around death and dying (P05). For participant five, the potential death of her mother following a cancer diagnosis prompted her to start thinking more about death, including actively thinking about her own death. Her mother's death was going to be her first significant death-related experience as she had not experienced the death of a close friend or relative. Although she does not feel entirely open to having death-related conversations with "those that matter" (e.g., family members), her mother's diagnosis has led her to recognise the benefits of such conversations. This prompted her to want to become more open to death and dying. Wanting to become more open to death encouraged this participant to start exploring her relationship with death through such activities as reading and watching documentaries. This is illustrated in Figure 24. Figure 24 - Illustrating the Influence of Being Faced with the Potential Death of Others on Participant’s Openness A similar experience was identified by analysis of the data collected through theoretical sampling (P29). Participant twenty-nine stated that her openness towards death changed after her grandfather's death (this is further explained in the subcategory 'Experiencing the death of a grandparent'). Although her openness started to change after her grandfather's death, since meeting her boyfriend, who had previously been diagnosed with cancer, she felt a "closedness" when thinking and talking about death and dying within the context of her partner's situation. This could suggest that openness can change depending on the situation that individuals find themselves in. For example, some individuals may be open to thinking and talking about the subject; however, their openness can change depending on their death-related experiences at that particular time. This could also indicate that openness can change depending on the immediacy or closeness to the person that the death-related experience relates to. Being faced with the potential death of othersRecognising the benefits of opennessExploring their relationship with deathPromoting more openness around death and dying Actively thinking about death and dying Wanting to become open ● Exploring fears ● Reading and watching documentaries 155 5.3.6 Experiencing the Death of a Loved One For some participants experiencing the death of a loved one prompted them to start actively thinking and openly talking about death and dying. In the initial sample, two participants stated that the death of a loved one had led to more openness around death and dying (P11, P15). Similar experiences were described by eight participants recruited as part of theoretical sampling (P18, P21, P25, P2, P28, P29, P30, P31). One new experience was identified via the analysis of the data acquired through theoretical sampling, 'Experiencing the death of a pet' (P19). Considerably more participants recruited through theoretical sampling suggested that experiencing the death of a loved one had contributed to more openness. The majority of these participants were recruited from death-related Facebook pages and groups. This could suggest that those that have experienced the death of a loved one may seek out comfort and/or information from others via social media. In addition, this could also indicate that a lack of death-related discussion between family and friends led them to seek out conversations with those online as it may be easier to engage in such topics with those not personally involved. Experiencing the death of a loved one is split into four subcategories: 'Experiencing the death of a parent,' 'Experiencing the death of a partner,' 'Experiencing the death of a grandparent', and 'Experiencing the death of a pet'. Figure 25 illustrates how experiencing the death of a loved one contributed to participants openness around death. 156 Figure 25 - Illustrating the Influence of Experiencing the Death of a Loved One on Participant’s Openness 5.3.6.1 Experiencing the Death of a Parent For some participants, experiencing the death of a parent has had a significant impact on their openness towards death and dying (P01, P17, P18, P21, P25, P28, P31). For these participants, the death of a parent acted as a turning point moment where they openness towards the subject began to change. Most participants experienced the death of a parent when they were relatively young (between the ages of 18 to 41). Although some participants had encountered previous death-related experiences, the death of a parent held more significance. Participants stated that they were forced to confront mortality after the death of a parent. Death was now seen as more than just a concept. Experiencing the death of a parent challenged participant’s attitudes towards death and dying. For one participant this led to the realisation that there are worse things than death. For another, the death of a parent led to the realisation that death is unpredictable and indiscriminate. However, for most participants, this experience led to the realisation that death is not something that is openly discussed. Participants found it upsetting, frustrating and difficult being unable to talk openly about their experience with others. This encouraged participants to recognise the benefits of openness towards death and dying which contributed to them becoming more open to the subject. Experiencing the death of a loved one Recognising the benefits of opennessExploring their relationship with deathPromoting more openness around death and dying Death seems more possible (more real/less of a concept) accept, acknowledge and become more conscious that death is a possibility for all Recognising the negative effects of not pre-emptively discussing death Recognising the benefits of openness in enabling individuals to have a good death Recognising the benefits of normalising death-related conversations Recognising the benefits of death-related conversations in preventing distress for those left behind Having to deal with the practicalities and formalities around death whilst grieving Reducing death-related fears and anxieties (death of a parent) Experiencing a lack of death-related discussion Changing views on death – there a far worse things than death, death is unpredictable and indiscriminate Being with the body after death Confronting death Trying to make sense of the death (spirituality and survival stories) Help process the death Exploring the subject of death (Kubler ross/Caitlyn Doherty – enabling a ‘good’ death) 157 Participant eighteen’s parents died when she was aged 18 and 22. The death of her parents prompted her to recognise the reluctance of others to engage in death-related conversations: However, at 18 my mother became terminally ill, and I felt utterly unable to discuss this with anyone and then my father died when I was 22, and again the topic seemed more or less taboo. It became clear to me that death is not a popular topic with people. I began to realise that the general avoidance of the topic of death is almost humorous as it is the one thing in life - that none of us can avoid and yet the one topic that our culture seems to try to avoid at all times. She explained how she was forced to confront the subject of death for her mental health. She began to actively think about the topic by reading about how people confront death through survival stories. After the death of her parents, she began to develop a growing fascination with death and spiritual matters to “try and put some sort of meaning to everything”: “I’ve never tried to pinpoint this before, but I do feel that my parents’ deaths so young left me with a thirst to know more about that great mystery of life - death” For this participant, the death of her parents and the realisation that death-related conversations are avoided led her to recognise their importance. As a result, she has openly spoken about death and dying with family and friends. Participant twenty-one’s father died when she was eighteen. She was extremely close to her father, and his death was sudden and unexpected. Whilst visiting her father in the hospital, she recalls a lack of communication between her and the hospital staff. She did not know that he was dying, and as a result, she was left feeling confused and unprepared: …No one told me what was happening. No one told me he was going to die. Then a couple of days before he did, I remember being called in to the doctor’s office in the hospital (my dad still on the ward) and the doctor asking me if they wanted me to resuscitate my dad if he died. I remember thinking what a stupid question that was, and I said yes of course I did. Again, no information - just a lot of assumptions that I somehow knew what was going on at the age of 18. Her attitude towards death changed after the death his father. She came to the realisation that death is unpredictable and indiscriminate. 158 The subject was always on my mind as you’ve seen, but his death brought it more sharply in to focus; the death of a parent is something that can challenge the ‘View of a Just World;’ that if you’re ‘good', ‘bad’ things don’t happen. She explains how she honestly thought that her dad would live forever. Reflecting on this experience, she thinks about how “naïve” she was. This has led her to recognise the benefits of normalising death-related conversations to prevent confusion. Consequently, she became more open to the subject of death. Participant thirty-one explained how her father's death led her to become more open to death and dying. Her father was diagnosed with Motor Neurone Disease and died eight weeks after his diagnosis. She suggested that her family were in denial and therefore were reluctant to engage in death-related conversations. Although she tried to talk to him, he refused to engage in such discussions for fear of upsetting her mother: I tried talking to my dad about his disease but even when my Mum was not present, he would not discuss it as he did not want to upset my Mum. This was such a difficult situation to be in as I wanted to know how Dad felt, what type of funeral he wanted and so much more, but all such discussions were stopped before they began. Playing the “game of let’s pretend it’s all ok” was so difficult. Her father’s death was a significant turning point in her life. His death encouraged her to recognise the benefits of death-related conversations in preventing distress for those left behind; as a result, she has openly discussed end-of-life wishes and care with those she loves. Participant twenty-five started to actively think about and engage in death-related conversations after the death of her father. She explained how the death of her father forced her to confront death: Ultimately it was after his death that I had to really start talking about death. You do not really have a choice – for years it is all you really think or talk about. After going through this loss, something that somewhat separated me from my peers, you do feel a sense that you are now “qualified” to speak about death as someone that watched a parent die. After his death she came to the realisation that death-related conversations are avoided. Similar to other participants, recognising others’ reluctance to engage in death-related conversations encouraged her to become more open to the subject. 159 The above quote could suggest that people may find it challenging to engage in such conversations if they have yet to encounter a death-related experience. This could prevent people from facilitating such discussions because they assume they are not “qualified” to initiate or partake in such conversations. Contrastingly, two participants stated that the death/potential death of their parents reduced their death-related fears and anxieties (P01, P05). For participant one, the death of his parents led to more openness around the subject. For participant five, reflecting on the potential death of her mother has reduced death-related fears and anxieties. For example, participant one stated: I think my own parent's death affected me. I think once my dad died, I wasn't as afraid because I thought well, he's gone, and I'll only go where he's gone unless I go down that way (laughs). I think it was a sudden change, it was sudden, and I lost my fear of it as much. Participant five: … I also think that… do you know what I… what I've been thinking lately? I've been thinking that if, if my mum dies, right? Then… and I die, I'll be alright because she's there. I feel a bit like that, yeah, and I know other people have died, lots of people have died, famous people have died, young people have died, and and so, it must be alright. That’s crazy, but I do think more and more, well, if, if anything happens to my mum, I will, I'll be alright about it if I was to die because she, she got… she's gone through it. 5.3.6.2 Experiencing the Death of a Partner For participant eleven, the death of her ex-husband contributed to her becoming more open to thinking and talking about death and dying. His death was sudden and unexpected, and she found it extremely difficult to deal with his death. She explains how death suddenly became more “noticeable,” “possible”, and “real”. Becoming more open to thinking and talking about death and dying was a sudden change for this participant. She stated that before her ex-husband’s death, she did not think or talk about death as it did not seem relevant to her. This experience prompted her to start actively thinking about death and opened death-related conversations with family and friends. His death led her to recognise the benefits of such conversations. It forced her to realise that there are a lot of practicalities and formalities around death that need to be discussed. This experience prompted her to want to start actively thinking and openly talking about death and dying as she found it hard to deal with the formalities of his death whilst she was grieving. 160 5.3.6.3 Experiencing the Death of a Grandparent For two participants, experiencing the death of a grandparent contributed to more openness around the subject (P29, P30), though subsequent death-related experiences have also affected this openness. Participant twenty-nine's openness towards death and dying started to change following her grandfather's death when she was seventeen. After his death, she remained with his body. She found that as soon as she left, she wanted to be back with him: I went with my cousin at first but found that as soon as I was away from my grandfather, I wanted to be back there. Somehow, I wasn’t scared by the fact he was dead. The death of her grandfather was a positive experience for participant twenty-nine. His death was expected, peaceful and felt more significant than prior death-related experiences: I kind of remember at the time thinking this feels like it should be scarier than it is, but it just felt quite peaceful. There was nothing… it was just quite a nice place. He had his own room and it I don't know it was… it was a bit of a weird… I want to say a bit of an out of body experience, but you know it was a bit like “wow, this is happening and…” but somehow, I felt drawn to… I just felt like I was… I was there and it was good that I was there, and it was OK that he was dying. Although he was the third of her grandparents to die, his death had the greatest impact on her. She explained how being with her grandfather’s body after death helped her to process the death: So, he was… erm, the third grandparent of mine that died. Erm, and in comparison, to the others, it felt… I feel like that's how I feel in hindsight because I remember that was… his death stayed with me a lot longer and it was… it kind of felt harder at the start because I couldn't forget about it, but in a way I think that's what helped me erm, it was kind of quite present with me for a period of time and then I really… and then I feel like I had processed it whereas I think some of my other relatives that have died, if I haven't been there, erm, it’s… it… it had almost sort of slipped my mind for a bit and then… and then come back again and… so yeah, I do think it felt different to me, his death. This experience contributed to her no longer being afraid of death: I think this experience I think contributed to me being a person that is not really afraid of death. I don’t want to die, and I am afraid of the process of dying and of being in pain. But death itself isn’t really scary to me. 161 Although her grandfather’s death prompted her to become more open to death-related conversations, she has only started to actively think about her own mortality since meeting her partner. Her partner was diagnosed with bone cancer prior to meeting participant twenty-nine. She explains how he assumes he will not live to old age - not for a specific medical reason but because having cancer has made him more aware of death. This has made her aware of the extent to which she does assume that she will live a long life: The experience with my boyfriend has made me more open to thinking about death due to the fact it is a little bit part of our lives. Even though death isn’t a major risk, we do talk about it a bit and my partner talks about his life expectancy sometimes. I think…. that's just purely, erm, seeing him think about it makes me go, “oh, I guess that’ll happen to me as well” and in some ways sometimes I think about my boyfriend because he gets his scans and stuff, part of me thinks “well he knows more than I know about what's going on in my body”. So, like it's… it… just because nothing bad has happened to me so far doesn't give me any guarantees that it won't. so, I guess that's… that's how… yeah, it's just seeing it happen to him makes me think about it for me. Reflecting on her partner's situation changed how she thinks about death. It has encouraged her to think about her own mortality and the extent to which she assumed she would live a long life. Death feels "realer" and more of a possibility not only for herself but for those she loves. Reflecting on this, she feels different from her friends, whom she assumes have not thought about death. Even though she became more conscious of death, and her death-related conversations became more serious, frequent and personal, there was a "closed-ness" that she reportedly feels about death that was not present before: The experience with my grandfather made me less scared of death, whereas when my boyfriend says things about dying early, I am very scared and have to stop myself from saying something like “shh let’s not think about that.” I want to be open with him and to acknowledge these fears that he has, and I do that. But there is a part of me that wants to cover my ears and shout “no, no, no.” Although her grandfather's death contributed to more openness, there is tension between her being more open since his death and wanting to sometimes close down the discussion with her partner. Reflecting on her previous death-related experiences has prompted her to recognise the benefits of such conversations; as a result, she tries to push through the fears that these conversations elicit in order to engage in such conversations: 162 … I don't think I am closed to talking about death by the way, it… it's not that I feel I’ve become closed and stayed closed, it's just that now that it’s scarier there's a bit… there's a bit of me that also has to go you can do this (laughs). And kind of keep engaging with it. I fundamentally think it's good to… I guess that's quite a big part in general of my relationship with my boyfriend is that I want us to be able to share the good and bad things, erm, so I sort of guess I overall believe in sharing (laughs). Erm, and talking about stuff, the power of talking about things. Erm, I guess I don't want him to feel like I felt when I was a kid after my grandpa died where it was a bit like, hmm, this is all a bit scary so let’s just not mention it, erm, and I also don't… I wouldn't want him to… I guess I'm conscious that I want him to know that even though when he talks about it, I'll… I will most likely get upset during the conversation; I want him to know that that's okay. Like I can… I can handle being upset and basically, I don't want him to not talk about it because he's scared about upsetting me, which I suppose is probably that's kind of how I felt about my mum, that I didn't want to speak to her about her dad dying because I didn't want to upset her, and I don't want him to feel like that. Erm, and I don't… I just don't want him to feel like he has to pretend, you know, if he’s scared then I just… I want to know that. I don't want him to feel like he has to pretend that he’s fine. Similarly, participant thirty stated that it is a combination of all her death-related experiences that have promoted more openness around death and dying. Her openness started to change after the death of her grandfather. He died when she was a teenager and did not attend the funeral. She remembers feeling confused and could not comprehend why she was denied the opportunity to say goodbye: … and then his father [her grandfather] died, who was my absolute favourite, and I was a teenager, and the most awful thing was that I couldn't go to his funeral. Erm, I had such a deep desire to say goodbye to him because one day he was here and one day he wasn’t here, and I saw him every week… I was so shocked by the fact that I hadn’t had this chance to say goodbye. Her grandfather’s death led her to start exploring the subject of death. She began volunteering at a hospice and started to engage with the subject of death actively: So, I think that [the death of her grandfather] led me onto an inquiry, and I was always quite a serious child. I went to art school when I was 18, and when I was at art school, I became aware of the Hospice movement, and it was reading… the most seminal book for me that 163 really crystallised this was Elizabeth Kubler Ross's book ‘On Death and Dying’. And when I read that book it sort of soothed me, shall I say. I felt that there is a good way to die. Participant thirty’s family were holocaust survivors. She learnt a lot about her family’s history and the atrocious way that Jews were treated and killed during the holocaust. In the above quotation she explains how she was “soothed” by reading Kubler Ross’s book ‘On Death and Dying’ as she realised that it was possible to have a good death. While the death of her grandfather prompted her to start exploring and engaging with the subject of death, it was the death of her father that prompted her to recognise the benefits of death-related conversations. She went through an intense period of watching her father die. Looking back, she believes that the time spent with her father, before his death, was “utterly profound.” During this time, she learned a lot about her father. She spoke to him about his funeral arrangements and death more abstractly. Engaging in such conversations prompted her to recognise their importance: …it [her father’s death] made me realise that… how massively important it is to have a way of speaking about death, of not being in terror about it. Like participant twenty-nine, she explained how seeing her father’s body post-death contributed to her openness around the subject. After seeing his body in the Chapel of Rest, she knew that he was no longer there: …he was not there and that was the absolute clincher because I knew then that whatever you believe in, faith or not faith, that the essence, that the spirit, the thing that made him a life force was gone and there was only the body and that was such an immense comfort to me. She had the same experience a few years later after the death of her friend. She explained how seeing the body after death reinforced her belief that we are more than just our bodily form. Although the body has died, our essence or the thing that makes us unique lives on. This brings her comfort and a sense of peace when contemplating death. For these participants, seeing the body of their loved ones after death has promoted more openness towards death and dying. Both found being with the body after death to be a positive, reassuring experience that helped them to process the death. 5.3.6.4 Experiencing the Death of a Pet The analysis of the data acquired through theoretical sampling revealed one new type of experience that led to more openness around thinking and talking about death and dying, ‘Experiencing the 164 death of a pet.’ Experiencing the death of a pet was mentioned by five participants in the initial sample (P04, P06, P11, P12, P14), and two participants recruited through theoretical sampling (P19, P28). This was typically in response to reflecting on early childhood experiences of death. However, for one participant (P19), the death of a pet directly prompted her to become more open to thinking and talking about death and dying. For participant nineteen, the death of her family dog led to more openness around death and dying. Although this participant had previous death-related experiences (the death of her grandmother and her grandmother’s partner), she considered this death her first significant death-related experience. In addition, this was the first time she actively participated in the death of something she loved. Her dog was thirteen and died from an illness that began and ended in a weekend. This death-related experience was the first time that they had openly grieved together as a family. We [her family] were all distraught. Openly and loudly. It was the first time I’d seen such raw emotion from both of my parents. Although she had previously experienced the death of a pet, this time, she wanted things to be different. She had recently watched a video on pet death by Caitlin Doughty and discovered that it was possible to tailor death practices to your pet. This prompted her to organise a home funeral for her dog. She stated: I ended up orchestrating a home funeral for our dog – lying her body on our living room coffee table, resting on her bed that was stuffed with bags of ice in black plastic binbags, shrouded by blankets that we’d purchased when she was a puppy. I arranged her favourite toys around her. And flowers. I positioned her ears and head to look like she was asleep. I felt how cold she was and how rigor mortis was already setting in. I lit candles and asked my family; waiting nervously in the next room for what I was doing, to come in and sit with her… I handed out bits of paper and suggested we each write a letter to our fallen dog, thanking her for all she’d done for us. We didn’t read them aloud or share, we just tucked each folded paper under her paws. We spent the rest of the day at home with her body, watching clips of her from years past, until it was time to take her body to the local pet crematorium. Afterwards we watched Lady and the Tramp together, as we always called her ‘our lady.’ The death of her dog was a positive experience for this participant. Having an active part in her dog’s funeral helped her to deal with the grief of losing her beloved pet: Marrying my knowledge of the macabre, beautiful, poetic side of death with the very raw emotional gymnastics of the grieving was a huge step for me when it came to acceptance. 165 This experience “catalysed” her craving for a ‘good death’ and prompted her to recognise the significant impact having a ‘good death’ can have on those left behind. As a result, this experience has prompted her to start having death-related conversations and to inspire others to have these conversations too. 5.3.7 Experiencing the Complicated Bereavements of Others Two participants stated that experiencing the complicated bereavements of others contributed to their openness around death and dying (P06, P14). For these participants reflecting on the complicated bereavements of others has prompted them to recognise the benefits of actively thinking and openly talking about death and dying. Recognising these benefits has contributed to them becoming more open to the subject. This is illustrated in Figure 26. Figure 26 - Illustrating the Influence of Experiencing the Complicated Bereavements of Others on Participant’s Openness Participant six explained how her openness towards death started to change after her Multiple Sclerosis diagnosis. Her diagnosis encouraged her to reflect on her mortality, previous death-related experiences and the death-related experiences of others. She explained how both of her ex-partners had nervous breakdowns after the death of their mothers. Reflecting on this experience, she worried about how her children would cope with her death, particularly her eldest son. After her diagnosis, she went through a process of “grieving” her old self and “embracing” her new self. She hoped that embracing her new self would help those around her come to terms with her diagnosis. Reflecting on the complicated bereavements of her ex-partners highlighted to her the benefits of openly discussing death to enable people to prepare for the death of others. As a result, she started openly talking about death and dying, with her children, hoping that it will help them accept and prepare Experiencing the complicated bereavements of othersReflecting on these experiences Recognising the benefits of opennessExploring their realtionship with deathPromoting more openness around death and dying• Reducing death-related fears and anxieties • Recognising the benefits of death-related conversations with children (Preventing psychological distress in later life/Not wanting children to grow up confused about death) • Coping with bereavement (Helping others to prepare and accept death) 166 for her death. Similar to the subcategory, ‘Being faced with their own potential death,’ this participant was prompted to think about her mortality after her diagnosis. However, unlike the other participants that were facing their potential death, she explicitly stated that reflecting on the complicated bereavements of others led her to become more open to the subject. Similarly, for participant fourteen, thinking about the complicated bereavements of friends facilitated her to become open to talking about death and dying. After the birth of her son, she started to think more about death and dying and the impact it would have on him (she found giving birth very existential). As a result, she started to reflect on the previous death-related experiences of herself and others. During the interview, she reflected on the death of her friend’s mother. Her friend was only eight when her mother died, and her last memory of her mother was of her being taken to the hospital. Although she knew her mother was ill, she did not know the extent to which she was ill and was not involved in the funeral. As a result, this participant suggested that she has “never known anybody who is so messed up by the death of a parent.” Similarly, she recalls other friends who have lost their parents at an early age. She suggested that they are “damaged” and “traumatised” by this experience. I don't think I've known anybody who is so messed up by the death of a parent, erm, and people that I've known, a couple of people that I've known that have lost parents young, … they're very damaged by it, they're very traumatised by it, they're very damaged by it. Being a mother and reflecting on these experiences enabled her to recognise the benefits of death-related conversations with young children. She wanted her son to view death as a natural part of life. She did not want him to grow up confused about death. Therefore, she believes it is important for her to speak honestly and plainly with him about death and dying. 5.4 Recognising the Benefits of Openness Recognising the benefits of openness was identified as an important part of how these participants became open to thinking and talking about death and dying. This category captures how reflecting on previous death-related experiences prompted participants to recognise the benefits of openness. This category mediates between other categories ‘(Death-related experiences’ and ‘Exploring their relationship with death’) and the core concept of openness. For example, participants were prompted to start thinking about death because of their death-related experiences. Reflecting on these experiences led them to see the benefits of openness. Recognising the benefits of openness has not only prompted participants to become more open to the subject but also plays a part in their continued openness towards the subject. 167 Recognising the benefits of openness emerged as a category from the initial sample. During the initial interviews, all participants acknowledged the benefits of thinking and talking about death and dying. However, for eleven participants, recognising this had a significant impact on their openness towards thinking and talking about it (P02, P03, P04, P07, P08, P09, P10, P11, P13, P14, P15). This category was not explored further via theoretical sampling as sufficient data was gathered from the initial sample. However, some participants recruited as part of theoretical sampling also stated that recognising the benefits of death-related conversations had contributed to their openness around the subject (P17, P18, P19, P20, P21, P25, P27, P28, P29, P30, P31, P35, P38, P29, P40). The most frequent death-related experiences that prompted participants to recognise the benefits of thinking and talking about death and dying were: ‘Being faced with their own potential death,’ ‘Experiences within work’, ‘Being faced with the potential death of others’, ‘Experiencing the death of a loved one’, and ‘Experiencing the complicated bereavements of others’. Although participants that have had a spiritual or near-death experience acknowledged the benefits of thinking and talking about death and dying, recognising these benefits has not played a significant part in how their openness towards the subject began to change. However, similar to other participants, recognising the benefits of openness contributed to their continued openness towards the subject. This category consists of four subcategories: ‘Preparing practically for death’ (‘End-of-life care and wishes’, ‘Enabling individuals to have a ‘good death’’), ‘Tackling fears around death and dying’, ‘Recognising the benefits of death-related conversations with children’ and ‘Coping with bereavement’. Figure 27 illustrates how recognising the benefits of openness contributed to participants openness around death and dying. 168 Figure 27 – Diagram Illustrating How Recognising the Benefits of Openness Has Contributed to Participant’s Openness Around Death and Dying 5.4.1 Preparing Practically for Death This subcategory captures how recognising the benefits of openness in enabling people to prepare for death practically has encouraged more openness around death and dying. Eleven participants recognised the benefits of openness to prepare practically for death (P02, P03, P04, P07, P08, P09, P10, P11, P12, P14, P15, P31, P35, P40). Participants expressed many topics they believed were important to consider and discuss before death. For example: • End of life care/wishes • Lasting power of attorney • Wills • Living will • Digital legacy and social media • CPR status • Financial affairs • Assisted dying • Funeral arrangements/wishes (cremation/burial) Death-related experiences Recognising the benefits of opennessExploring their relationship with death Promoting more openness Practically preparing for death • End of life care and wishes • Enabling individuals to have a good death Tackling fears around death and dying Recognising the benefits of death-related conversations with children Coping with bereavement Significant death-related experience (as described in section 5.3 ‘Death-related experiences’) (initial openness) Reflecting on previous death-related experiences (continued openness) Continued openness 169 • Life support • Organ donation • Place of death Recognising the benefits of openness has encouraged participants to actively think about and engage in conversations around practically planning for death (P02, P03, P04, P06, P07, P08, P09, P10, P11, P12, P14, P15, P21, P30, P31, P33, P35, P37, P38, P40). 5.4.1.1 End-of-life Care and Wishes This subcategory captures how recognising the benefits of pre-emptively thinking about and discussing end-of-life care and wishes has promoted more openness around death and dying. Most participants stated the benefits of pre-emptively thinking about and discussing end-of-life care and wishes (P02, P03, P04, P07, P08, P09, P10, P11, P12, P14, P15, P31, P35, P40), however, nine participants were prompted by their death-related experiences to recognise the benefits of this. These experiences include: ‘Being faced with their own potential death’ (P03, P08, P40), ‘Experiences within work’ (P04, P09) and ‘Experiencing the death of a loved one’ (P11, P15, P31). Participants suggested that by normalising death-related conversations, people can reflect on what is important to them and, thus, make more informed decisions about end-of-life care and wishes. Two participants stated the benefits of death-related conversations specifically in relation to advance care planning (P04, P09). These participants both have a clinical background and volunteer as end-of-life doulas. For example, participant nine stated that working in this field encouraged her to recognise the benefits of death-related conversations in order to discuss and plan for end-of-life care: With my work, I’m very passionate about advanced care planning, erm, helping people to see, gently open up that conversation. … I feel we have a duty that we have to have these conversations. We can’t hide behind anything… they’re necessary and they’re important and we should be doing them. Similarly, working in a death-related field prompted participant four to recognise the benefits of openness to enable individuals to take “back control” and make more informed decisions about end-of-life care: So, we do something called an advanced care plan with people… it's about looking… who will look after you, who will support you, who's got your best interests at heart. If you're dying and you can’t talk, who will carry out your wishes? Who will ensure that you get the care that you've requested? Lasting power of attorney? Your will? Living will? Your digital legacy 170 and social media? You can look at all the stuff like that about… so, that, so, that you can take back control… you can't control death, but you can take back as much control as you can. … you can make a plan, like a birth plan, really, about what you want to happen if… when things… also, this doesn't come into force until, you know, obviously, near the end, but the more you've got in place the better it is, the better outcome you can have for your dying or your care… Four participants stated that the more we engage in death-related discussions around end-of-life care, the more likely we are to receive the kind of care we want (P04, P08, P09, P14). Participants recognised the importance of actively thinking and openly talking about end-of-life wishes pre-emptively to ensure that they will receive the type of care they truly wish for in the final stage of their life. For example, participant four suggests: “…the more you put in place the better… the more likely you are to have sort of your wishes and requests whilst you’re dying and the care that you want before you… whilst you’re dying and at death and after death. Similarly, participant fourteen highlighted the importance of discussing our end-of-life wishes with family and friends. She stated: “I think it’s also this whole thing of, erm, I guess, akin to that whole thing of, you know, of people, on, err, organ donation, of them not, you know, families wish, err, families, family knowing your wishes is the ultimate thing (inaudible). So, you can have these wishes and then it can be overridden by family going, oh, I didn't know.” Some participants expressed the benefits of pre-emptively thinking about and discussing end-of-life wishes in preventing regret and reassuring loved ones. Participants provided examples of what happened when either themselves or others failed to have such conversations (P03, P07, P09, P10, P11, P12, P14, P31, P40). Reflecting on these experiences prompted participants to recognise the benefits of such conversations. For some, these experiences contributed to more openness around death and dying. For others, although these experiences did not contribute to their initial openness, reflecting on these experiences contributed towards their continued openness towards the subject. For example, participant nine recalled trying to initiate death-related conversations with her father on his death bed, however, he was reluctant to engage in such conversations: 171 I had it with my dad actually (laughs) when he was dying with cancer, it was 18 months, it was drawn out. … he was in the hospice … and I sat with him, and I just said, “Dad”, I said, “I just wanted you to know that if there’s anything you want to talk about, I’m here to listen, anything at all about any thoughts or any wishes, anything you’d like me to know”. Erm, and he said, “no, everything was okay. Participant nine found it difficult to encourage her father to participate and engage in this type of discussion. Consequently, nobody knew what he wanted for his end-of-life wishes or funeral arrangements. Reflecting on this experience, she still regrets not directly asking her father about his funeral wishes prior to his death: I did talk to my dad afterwards but at his funeral, I didn’t know what he wanted. There were still questions that we didn’t know. We did the best that we could but that’s what I want to, to get from him. So, that we’d know we could make sure his last wishes were known, but I couldn’t do it. This experience happened prior to her becoming open to death and dying. She suggested that now she would have had the “courage” to be able to engage in such discussions with her father. However, reflecting on this experience reinforced her belief in the benefits of having death-related conversations pre-emptively, which contributed towards her continued openness towards the subject. The death of participant forty’s mother led her to recognise the importance of funerals for those left behind. When her mother died, she was living at the other end of the country and only visited her once whilst she was ill. For a variety of reasons, her mother died alone in the hospice, which has “always haunted” her. Her mother’s death was a very negative experience, and she still feels regret over her mother’s funeral: Again, for various reasons - my two sisters were very young, and my father basically couldn’t cope with our mother’s death – the funeral was what I’d call a “bog standard” C of E service. My mother did occasionally go to church but was not exactly religious and the whole thing was cold and impersonal. I never got over the fact that it did not do her justice. However, the death of her father was a far more positive experience. She stayed with him up until his death and had an active role in planning his funeral. She stated: My sisters and I stayed by his bed until he died in our presence just over a week later. I have missed him so much ever since as we were always very close, but his death has left me with no remorse, unlike my mother’s. We were with him; we did all we could, and he died a 172 peaceful death. We arranged his funeral and conducted it ourselves, so it felt right and personal. At this point, she decided to train as a funeral celebrant. Her father’s death made her realise the difference it can make to the grieving process if you feel as though you have “done justice to those you love”. Recognising the benefits of openly talking about death led her to become more open to the subject. Participant seven explained how she would like her parents to discuss with her their end-of-life wishes and funeral arrangements; however, they refuse to engage in this type of discussion: I want them to feel like when one of them dies, I’ll do what they want me to do. I’ll be able, I know what it is they want… but just to know like do you want to be buried? Do you want to be cremated? You know, kind of how do you want me to deal with things? Do you, what do you want to happen at your funeral? You know, erm, all those kind of things that I just wish they’d just write down somewhere (laughs). On the back of an envelope, I don’t care where. Erm, or just tell me, tell me so that I know and that they know, they kind of… I would hate, that would make them feel comforted to know that we’ll do whatever they want but, erm, they just don’t like, especially, my dad does not like that conversation. The above quote emphasises the benefits of death-related conversations in providing reassurance and comfort to those left behind. Participant three also held this view. She explained how making our wishes and funeral arrangements known prior to death can prevent unnecessary regret and distress for surviving family members. She stated: So, for example, at the moment, if you don't talk about it, then when someone dies, and suddenly you have to make these decisions; what do I do? Did they want to be cremated or buried? Did they want a church or did they not? etc. And it… you're in such a shock, it's really hard to make those decisions. Erm, so, it puts people under a lot a lot of pressure. So, I think by talking about it, it's got many benefits, but one of them is is it helps those who are planning the funeral in a good way. Not just that they know the answers to the questions, but instead… it's really hard when people are in the shock of a death and having to make decisions, and I think that's part of the reason why people stick with the most conventional funerals possible is because the undertaker hands it to you on a plate and you say yes. Erm, and and that, and then you might go to a funeral which is completely different where they 173 had something much more personal and meaningful, and you think, oh, I wish, I wish we'd done that for my dad and people feel regret... This may suggest that recognising the importance of letting others know about our funeral wishes could promote more openness around the subject. Similarly, participants suggested that thinking and talking about practically planning for death is essential in preventing distress for surviving family members. For some participants, recognising the benefits of death-related conversations, particularly around preventing distress for those left behind, opened up death-related discussions with family and friends (P08, P11, P12, P35, P40). For example, after participant eight's cancer diagnosis, he started to think about practically planning for death with others in mind. Reflecting on his current situation prompted him to think about the importance of pre-emptive death-related conversations to prevent unnecessary stress for those left behind: … it’s important to talk about death from a practical point. It’s one of the givens in life, it’s going to happen therefore it’s better to be prepared. If everyone’s prepared, it’s much more distressing for the people left if preparations aren’t made. Similarly, participant twelve also shared this view. Recognising the benefits of preparing practically for death with others in mind has prompted her to start actively thinking and openly talking about such issues. She believes that it is important to talk about our end-of-life wishes to prevent distress for those left behind: You don’t want to make any unnecessary sadness… like my two sons to have to sort out a funeral or sort out my wishes. You want everything in a sense to be organised. So, it's more or less straight forward and they can grieve. They don’t have to carry that burden of trying to sort out the death, burial, everything like that. All your affairs are in order, and it’s a sense that they can have peace and peace of doing it. They don’t have to worry about doing all these little bits which are attached to death. So, it doesn’t make it harder for them to grieve. They’re just grieving for that person rather than thinking, oh God, I’ve got this to do, I’ve got to do that. This view was illustrated by participant eleven. As stated in section 5.3.6, for participant eleven, the death of her ex-husband prompted not only her but also her family to recognise the benefits of death-related conversations. His death was sudden and unexpected, and she found it difficult to deal with the practicalities of his death whilst grieving: 174 …I think the death of my ex-husband which was like almost four years ago… I think it prompted lots of these conversations. Erm, I think for my parents as well because, erm, it like, you realise how, that death is not just about you know the shock, emotional, psychological shock and loss and all of that, but the amount of formalities and practicalities you have to process is insane, and for next of kin it’s a lot of work, and I think my parents kind of realised that, and I think that prompted lots of conversations. Erm, so, yes, I think the death of my husband and also because I had to deal with those formalities and obviously it was very difficult when… I think that kind of opened those conversations in many ways. His death prompted her to recognise the benefits of practically planning for death as she felt unprepared to deal with his death both emotionally and practically. For these participants recognising the benefits of openness encouraged them to become or begin to become open to thinking and talking about it. Participants stated the following benefits of openness in regard to end-of-life care and wishes: • Preventing regret • Reassuring loved ones of end-of-life care and wishes • Preventing distress for surviving family members • Planning/preparing practically for death • Ensuring that individuals receive the type of care that they would like For most participants recognising the benefits of openness was triggered by their death-related experiences. However, this might suggest that inspiring individuals to see the potential benefits of openness, prior to experiencing death, could encourage them to become more open to the subject. 5.4.1.2 Enabling Individuals to Have a ‘Good Death’ This subcategory captures how recognising the benefits of openness in enabling individuals to have a good death prompted participants to actively think about and engage in death-related conversations. Some participants stated the benefits of thinking and talking about end-of-life care and wishes to enable individuals to have a good death (P03, P04, P09, P14, P15). For these participants, their death-related experiences prompted them to recognise the benefits of openness in enabling individuals to have a good death. For participant fifteen, the death of her mother-in-law prompted her to recognise the benefits of death-related conversations. For this participant, what she wanted to contribute to the research was an example of how pre-emptively talking about death can enable individuals to have a ‘good death’. 175 I think it [death] is a very important topic because if we can make… what I wanted to give you or to give the research is an example where it makes an enormous difference to be able to talk about it. Openly talking about death and dying with her mother-in-law enabled her to have a ‘good death.’ Her mother-in-law talked openly and honestly about how she wanted to die and what a ‘good death’ would look like to her; as a result, she died at home surrounded by loved ones: …in the end, it was, the room was full of compassion and kindness, and to my mind, that is quite an exceptional thing. Erm, I do think people… we should do a lot more to enable people to die at home. This experience prompted participant fifteen to recognise the benefits of death-related conversations in enabling individuals to have a ‘good’ death. This has encouraged her to openly talk about her end-of-life wishes with others, as she “feels very strongly” that people can have a good death if they talk about it openly before the imminent need arises. This could suggest that recognising the benefits of openness in enabling individuals to have a ‘good’ death, could encourage people to start actively thinking and openly talking about what a ‘good’ death would look like for them. 5.4.2 Tackling Fears around Death and Dying This subcategory captured how recognising the benefits of openness in tackling death-related fears initiated and sustained the participants' openness towards the subject. Participants were prompted by their death-related experiences to realise the advantages of openness in tackling fears around death and dying. For some participants, this realisation led them to confront their death-related fears to encourage more openness (P01, P03, P05, P11, P12, P14, P38). How participants explored and addressed death-related fears and anxieties will be explained in section 5.5, 'Exploring Their Relationship with Death'. For others, the realisation that openness can help to reduce,' 'eliminate,' 'alleviate' and 'overcome' fears around death and dying played a part in their continued openness towards the subject (P01, P04, P06, P07, P10, P11, P13, P14, P16, P38). Participants stated that being able to openly talk about death can give us the opportunity to share any worries, fears, or anxieties that we might have. As a result, the participants suggested that being able to talk about those fears can help us to examine, address and sometimes overcome them. For example, participant four stated: I think talking about it, err, does alleviate people's anxieties, anxieties not just fears, anxieties and yeah, yeah, and I think it helps them to sort things out in their mind and work it out and 176 come to terms with their own mortality, that they can… and that they can do something about this. Similarly, participant thirty-eight explained how recognising the benefits of openness in tackling death-related fears has encouraged him to start engaging in death-related conversations: If I don’t talk about it, I fixate on it and my own head starts running with the thoughts and can go to some scary places. I think it is important to talk about death just so people can feel comfortable talking about it as it’s something we all know about but are all scared to discuss. It does help [talking about death]. Like anything if you keep it to yourself and bottled up it festers and spirals out of control. Talking about it can be a respite, even if only briefly or slightly. Anything, regardless of how little that helps you is something you should do. Participant ten stated that acknowledging, exploring, and addressing our death-related fears can help to reduce them: … often when we talk about our fears they’re not as horrible as we make them out to be. I don’t know, I kind of see fear as being like a dark room. As soon as you shine a torch in it, it's not dark anymore. So, we can, we can label what our fears are if we talk about them. If we don’t talk about them, it's just this unknown that sort of, we're going to keep it down, we’re going to keep it hidden, but as soon as you un… but as soon as you uncover it and start sort of exploring it, there’s less to be scared of. Similarly, participant eleven suggested that by talking about our fears, we can acknowledge them and begin to process them: …speaking about something unpleasant that you fear… or a taboo is the first step to opening that box and bringing those dark locked secrets and fears to life and processing it. As long as it stays locked, you can’t do anything about it, and you don’t really know what’s in there and speaking is the only way for, for, for us to, to, to bring them to light and to do something with it… This view was also shared by participant thirteen. For example, participant thirteen stated: I think, I think, I'm a firm believer in we should talk and reflect on it because it's like anything… well, if you don't talk about it, you're not prepared or willing to look at it, you know? It's going to hit you like a tonne of bricks if you don't ever even… if you, if you channel things off in your head and never touch them, they become scary. Whereas if you are willing to like, gently process them, they’re less scary. 177 Similarly, participant four explained how engaging in death-related conversations can encourage individuals to explore their fears and start to address them. She stated: You open up the conversation, they start talking about it and usually, it’s a fear and then they start talking about that fear and they… then, then they can address it and some things you can’t… you can’t fix dying but you can fix somethings. So, if they’re worried about money, you can help them sort their money out which makes it easier. The above quotation emphasises the importance of openness towards death. Participants stated that engaging in death-related conversations around fears helped them to explore and address them. Not all fears and anxieties around death and dying can be addressed; however, fears around money, end-of-life care, and practically planning for death can. Participants have also suggested that by sharing our fears with others, we realise that we all have similar fears and anxieties around death and dying (P01, P11). For example, participant one stated: I think even if you're not close to death, I think it's still good to talk about it. I think it might eliminate or reduce sort of worries about it. Thinking everybody's in the same boat, and you know. This theme was also present in participant eleven's interview. She stated that: I think we should talk about it, and I think we all have similar questions, issues around that, death and everything else, and I think the more we talk about it, the more, err, the easier it is for us to find answers or even if we don't find answers, we find peace. Erm, and we realise that we are all the same in those questions and thoughts, and so, I think when I talk about it, I'm more into let's just all say what's on our minds and exchange what we think, and I think that's enough. I'm not looking for anyone to give me answers or, or say, or even reassurance or comfort, but comfort comes from hearing each other out, and I think it's very important for us to talk about it. The above quotation indicated the importance of relaying our fears to others. Although most fears around death cannot be answered, people can find comfort in sharing their worries, fears, and anxieties with others. This indicates that recognising the benefits of openness in tackling death-related fears could prompt individuals to start exploring and addressing death-related fears, thus reducing death-related fears and anxieties. This could encourage individuals to become more open to the subject. 178 Similarly, some participants suggested that by promoting openness towards death, we can reduce/break the taboo surrounding it. Participants indicated that exploring our fears around death via talking about it will ‘lessen the fear around it’ and, as a result, reduce and possibly break the taboo (P01, P03, P07, P09, P11, P14). Participants assume that death is taboo and therefore believe it is important to break it. Participants stated that it is important to break the taboo that surrounds death for the following reasons: • Reducing fears • Improving end-of-life care • Helping people to practically plan for death • Enabling individuals to have a good death • Improving the psychological wellbeing of future generations • Helping others to accept and embrace death For example, participant one stated: …it’s like a taboo subject, isn't it? And I think, erm, you've got to smash taboos really. I think if we talk about it openly it might end or, and lessen the fear of it, mightn't it? Because it's something people, you know, won't talk about because it brings that fear out, and I think if you do talk about it, it might lessen it. Recognising the benefits of openness to reducing/breaking the death taboo was also expressed by eight participants (P03, P07, P09, P11, P14, P19, P35, P40). For example, participant three stated: I think that there's a taboo, and my my understanding of taboo is we have an unspoken agreement not to talk about something. So, if we start talking about it, we will break the taboo, and this taboo is powerful and it's… so, it's almost like it… it's like the first step… as long as the taboo is there, everybody is going to be avoiding it. This view was also held by participant seven and eleven: …I think, and the more you talk about it the more, the easier it becomes, I think, erm, the more natural it feels to talk about it. Rather than it being this sort of weird taboo thing that isn’t good or, erm, you just shouldn’t talk about. Participant eleven stated: 179 I think it's very important for us to talk about it because, erm, death is, I think we all fear death in… whether it's our own or someone else’s, err, it's always a difficult experience and I think that’s what turns it into a taboo subject sometimes, and I think taboos they grow and become monsters of their own and scary, and so, I think, erm, so, I think we should be talking about it. Participants stated that thinking and talking about death encourages us to face our fears leading them to become less fearful. As a result, participants suggested that this will help to reduce and possibly break the taboo around death. All participants stated that breaking the taboo around death and normalising death-related conversations is the first step towards encouraging individuals to become more open to the subject. 5.4.3 Recognising the Benefits of Death-related Conversations with Children This subcategory captures how recognising the benefits of death-related conversations with children prompted participants to facilitate death-related discussions with their young children and grandchildren. Eight participants recognised the benefits of death-related conversations with children (P12, P13, P14, P21, P25, P29, P31, P35). Participants highlighted the importance of normalising death with children and not excluding them from such discussions. For four participants, their death-related experiences highlighted the benefits of openly discussing and normalising death with children (P14, P21, P29, P31). Participants stated that normalising death-related conversations with children will help to: • Prevent confusion • Reduce fear • Prevent the feeling of isolation • Help children cope with grief For participant fourteen, recognising the benefits of death-related conversations with children was integral to her openness around thinking and talking about death and dying. As stated in section 5.3.7, reflecting on the complicated bereavements of others has prompted her to recognise the benefits of normalising death with children: So, I guess that in the context… knowing that [reflecting on the complicated bereavements of friends], and in the context of my relationship with my son and becoming a parent, I think it was very clear and evident to me that this is bloody important. And how you handle death and talk about death, erm, is bloody important. 180 As a result, it has become important for her to be plain-speaking about death with her son. She wants to be factual and encourage the belief that death is a natural part of life. Similarly, she suggested that being straightforward and plain-speaking about death with children prevents confusion. She recalls a conversation she had with her son about the death of their dog: If, if I’d said some bollocks about her [dog], she's just sleeping, she went to (inaudible) she's, you know, all that stuff. He'd be like, but why? You know (laughs). Like, (inaudible) grew up, you know, about that whole thing of confusion that we do to children, I don't think helps. I feel quite strongly about that as well (laughs). Similarly, as stated in the section 5.3, ‘Death-related Experiences,’ participant twenty-one was prompted by the death of her father to recognise the benefits of death-related conversations with children: I genuinely thought as strange as this sounds (but keep in mind I was 18 years old) my dad would live forever. Which when I think about it (he was 72 when he died), shows how ’naive’ I was, and why I now think it’s so important to talk about death to children when appropriate, to almost ’normalise’ it. In addition, as stated in section 5.3, ‘Death-related Experiences,’ participant twenty-nine’s grandfather died when she was seventeen. After his death, she wanted to talk about her experience but found that family and friends were reluctant to engage in such conversations: Anyway, I do really remember being back at school and telling my friends about it, but there being no follow up questions, and it was never really mentioned again. I remember having a really strong feeling that this incident in my life, of seeing death, deserved a bit more conversation, and that I really wanted to talk about death more. She found it challenging to initiate such discussions with those close to her. Being unable to talk about her experience with others left her feeling lonely and isolated from her friends at school. I think I felt a bit isolated really. I felt a bit of a separation from my friends. it felt like kind of this thing in the air that I had seen somebody die and they hadn’t kind of. Erm, and erm, yeah it was… it was… it just felt like a separation, erm, but I didn't really know how to deal… I didn't know how to broach the subject. I think I didn’t really… I didn’t really know how to say to my friends can I talk to you for a while longer about the fact that I saw my grandfather die. 181 Reflecting on this experience led her to recognise the importance of death-related themes in children’s literature and media: One other thing I remember is the realisation that, if I lived in the Harry Potter universe, I would be able to see thestrals now (creatures that are invisible unless you have seen death). I was a big Harry Potter fan, and this felt very significant to me. As an adult, I look back at that now and think how important it is for these themes to be present in literature/other media for children and young adults because having that validated my feelings that it was a big moment in my life, and also made me feel less alone. Similarly, reflecting on previous death-related experiences prompted participant thirty-one to recognise the benefits of normalising death with children. Although she had experienced death during childhood, she was kept away and protected from these experiences by her parents. She realised that her parents were trying to protect her, however, she knew that this was not healthy for her. This realisation led to her becoming more open to talking about death with her children and grandchildren: I think my parents were like this as a way of protecting me, but I know that it was not good for me and as a result I have been so much more open about death with my own children and grandchildren. The data indicated that for most participants, early childhood bereavement did not promote or hinder openness around death and dying; however, during interviews, participants acknowledged the significant impact that their childhood experiences of death had on them in later life. Reflecting on childhood experiences of death, participants frequently mentioned feeling scared, frustrated, confused, isolated and forgotten. Similarly, participants recalled being protected from death by their parents. Most participants viewed their childhood experiences of death as negative. For example, many participants remember not being allowed to attend the funeral of a loved one. For some participants, this is still something they think about to this day, how they were denied the opportunity to say goodbye. Similarly, participants recalled considerable confusion around childhood experiences of death and remembered a lack of communication between close friends and family after a death occurred. Remembering this has encouraged participants to recognise the benefits of openness around death with children, and this has prompted them to become more open with their children and grandchildren. 182 5.4.4 Coping with Bereavement This subcategory captures how recognising the benefits of openness in helping with bereavement has encouraged participants to become more open to the subject. Seven participants expressed the benefits of death-related conversations in helping individuals to “prepare,” “cope,” “heal,” and “help” with bereavement (P03, P06, P09, P11, P12, P18, P20, P21). As stated in section 5.3, for some participants, reflecting on previous death-related experiences led them to recognise the benefits of openness in helping individuals come to terms with bereavement. For others, recognising this benefit contributes towards their continued openness towards the subject. Participants highlighted the need for healthy conversations around death and dying from childhood through to adulthood with an emphasis on emotional preparation in terms of bereavement. Participants indicated that encouraging more openness towards death can help with bereavement in the following ways: • Preventing psychological distress • Helping individuals feel more prepared for the death of a loved one • Improving psychological wellbeing • Encouraging individuals to grieve openly • Helping individuals to accept the death • Helping individuals to acknowledge and express their emotions The most common death-related experience that led to this realisation was experiencing the complicated bereavement of others (P06, P10, P14). For these participants, reflecting on the grief of others has prompted them to see the importance of openness in helping people cope with death. Reflecting on the bereavements of others, participants suggested that known others were “traumatised,” “couldn’t cope”, and had “nervous breakdowns” after the death of a loved one. This led them to see the potential benefits of becoming more open to death in helping others to cope with a bereavement. Recognising the benefits of openness was mainly in relation to participants’ thoughts about how their children would cope with death. Participants wanted to become open so that their children would be able to prepare for, cope with and accept not only their deaths but also the deaths of others. Other participants also shared this view. For example, participant twelve stated: …we should talk about death, so people know how to cope with it. We should talk about death, so people know how to feel. It’s acceptable to be angry or sad. 183 Similarly, participant eighteen suggested that openly talking about death and dying will enable people to grieve more openly: … it is a very unhealthy society if only the people who have experienced it can talk about it - as it means that those who are grieving are often stuck in silence. It also makes the process of death more difficult - I imagine…I think it is vital we discuss death openly so that bereaved people can feel grief is normal instead of being medicalised (is that a word?) and if they could grieve openly, I imagine their grief would heal quicker. Additionally, participant nine stated that openly talking about death will be beneficial to our psychological wellbeing. For example, she stated: …there wouldn’t be as many psychological hang-ups or depressions when people die because they just haven’t coped with the fact that they are not going to see that person again. Although participants stated that encouraging openness will help with bereavement, it is important to acknowledge that grief is not a linear process. There is no ‘right’ way to grieve, as everybody grieves differently. For some, openly talking about the death of a loved one may help; for others, this could be harmful. However, reflecting on their own experiences, participants believe that encouraging more openness will be beneficial to those experiencing bereavement. Most participants were prompted to recognise the benefits of openness after a specific death-related experience, however, recognising these benefits, prior to death, could promote a more open attitude to engaging in such discussions. This could be promoted via death positive campaigns such as Dying Matters. 5.5 Exploring Their Relationship with Death The third major category identified is exploring their relationship with death. Reflecting on previous death-related experiences and/or recognising the benefits of thinking and talking about death and dying prompted participants to explore their relationship with death. This category captured how exploring fears and beliefs around death and dying, via actively engaging with the subject of death, helped to reduce fears and promote openness. Participants chose to actively explore their relationship with death and dying through activities such as reading, watching documentaries, attending events and talking with friends and family. See table 15 for sources of information about death and dying explored by participants. For these participants exploring their relationship with death has contributed to more openness. Exploring their relationship with death is an umbrella term that I have used to explain the different processes at play in this category. Reflecting on previous death-related experiences and/or 184 recognising the benefits of openness prompted participants to explore their relationship with death, particularly fears and beliefs around death and dying. Although reflecting on previous death-related experiences prompted participants to start exploring their relationship with death, there is a distinction between the type of death-related experience and the death-related subjects that participants’ explored. For participants that had a more ‘typical’ death-related experience such as experiencing the death of a loved one, experiences within work, being faced with their own potential death or the potential death of others, recognising the benefits of thinking and talking about death and dying prompted them to start exploring the subject of death to address death-related fears and anxieties. However, for participants that encountered a transcendent spiritual or near-death experience, this has prompted them to explore their after-death beliefs. For these participants, exploring their after-death beliefs helped them to make sense of their experiences, reinforced their belief in the afterlife and removed their fear of death. As a result, this contributed to more openness around thinking and talking about death and dying. However, there was some overlap between exploring after-death beliefs and participants that have had a ‘typical’ death-related experience. In the initial sample, thirteen participants had/or had begun to explore their relationship with death (P01, P02, P03, P04, P05, P06, P09, P10, P11, P12, P13, P14, P16). Eleven of these participants were prompted by their death-related experiences to start this exploration (P01, P03, P04, P05, P06, P09, P10, P11, P12, P14, P16). Nine participants were recruited to explore this category further in the second stage of theoretical sampling (P32, P33, P34, P35, P36, P37, P38, P39, P40). Two participants (P33, P35) recruited through theoretical sampling had not experienced a significant death that ignited this exploration. However, exploring their relationship with death via actively thinking and engaging with the topic enabled them to become more open to the subject. Participant thirty-five was prompted to explore his relationship with death after becoming interested in Buddhism after his 50th birthday (P35). Participant thirty-three could not identify a single event that prompted him to explore his relationship with death; instead, he stated that he has always been interested in big existential questions (P33). Additionally, eight participants from the first stage of theoretical sampling, ‘Death-related experiences,’ also suggested that exploring their relationship with death had contributed to more openness around the subject (P17, P18, P19, P20, P21, P24, P30, P31). Participants stated that exploring their relationship with death via engaging with the subject contributed to their openness by enabling them to reconceptualise death, become more death-literate, raise their death awareness and ultimately live life more meaningfully. Additionally, participants’ continuous engagement with the topic also played a part in their continued openness towards the subject. 185 Table 15 - Sources of Information about Death and Dying Explored by Participants Books Death Topics Death Exploring how other cultures deal/view death (P06, P20, P35) Specific With Death in Mind – Kathryn Mannix (P09, P35) On Death and Dying – Elizabeth Kubler Ross (P30) Die Wise - Stephen Jenkinson (P05) Staring at the Sun - Irvin D Yalom (P35) Four Thousand Weeks: Time Management for Mortals - Oliver Burkeman (P35) Spiritual Topics Near-death experiences (P03, P10, P34) Past lives/Reincarnation (P24) Spiritualism (P34, P36) Buddhism (P03, P07, P30, P35) Exploring different cultures (P20, P35) Religion (P01) Out of body experiences (P34) Angels (P34) Survival stories (P18) Specific books Many Lives, Many Masters - Brian Weiss (P35) Forty Years a Medium - Ursula Roberts (P36) This is Spiritualism - Maurice Barbanell (P36) The Ancestors Tale - Richard Dawkins (P20) The Meme Machine - Susan Blackmoore (P20) The Living End - Guy Brown (P20) The writings of Nietzsche and Dionysian (P07) Proof of Heaven - Eben Alexander (P03, P34) Religious Tyranny, Spiritual Truths - Alan Seymour (P34) The Healing Power of Angels: How They Guide and Protect Us - Ambika Wauters (P34) Revealing Heaven: The Christian Case for Near-Death Experiences - John W. Price (P34) The Tibetan Book of Living and Dying - Sogyal Rinpoche (P35) This Party’s Dead - Erica Buist (P35) Dying to be me - Anita Moorjani (P03) Spiritual 186 YouTube Topics Near-death experiences (P18, P34) Survival stories (P18) Reincarnation (P34, P37) Out of body experiences (P34) Specific YouTube videos None specifically stated Social media (P19, P31, P32, P37, P35) Specific groups Death café (P19, P31, P32, P37, P35) You Are Going to Die (P37) Grief groups (P31) End-of-life doulas (P35) Alternative burial options (P35) Cemetery/graveyard tours (P35) Death studies/courses (P35) TV programmes/documentaries Death Topics Death Specific Kathryn Mannix: Dying is not as bad as you think (P09) Good Grief workshops (P31) Grief Walker - Stephen Jenkinson (P05) Terry Pratchett: Choosing to die (P03) Departures (P28) Rites of Passage - Grayson Perry (P05) Spiritual Topics Exploring different cultures (P01) Near-death experiences (P18, P34) Specific TV programmes/documentaries None specifically stated Death cafés (P03, P19, P31, P35, P40) Topics talked about Exploring how different cultures deal with death (P35) Bereavement (P35) Fears around death and dying (P03) Attending the spiritualist church Topics Afterlife Communicating with the deceased Classes and events Spiritual classes and development (P34) 187 Demonstration of mediumship (P01, P24, P34, P36). Attending a development circle (P24) Attending death positive festivals Pushing up Daisies (P03) Conferences Topics Near-death experiences - Eben Alexander (P03) Courses End of Life qualifications (P31) Death doula course (P04, P09) Death studies/courses (online) (P35) Short course on death as a natural part of our life cycle (online) (P17) Exploring their relationship with death included three subcategories: ‘Exploring and addressing fears around death and dying (Engaging with death (Promoting more death awareness)/Reconceptualising death)’, ‘Exploring after-death beliefs (Engaging with death (after-death beliefs))’ and ‘Enabling individuals to live life more meaningfully’. The subcategory, ‘Enabling individuals to live life more meaningfully’ was not part of the process behind how these participants began to actively think and openly talk about death and dying, instead it demonstrates how exploring their relationship with death prompted participants to live life more meaningfully. Although this subcategory did not contribute to participants initial openness, reflecting on this encouraged participants to remain open to the subject. Below I have identified the topics explored, how participants explored these topics and how exploring their relationship with death contributed to more openness around death and dying. Figure 28 illustrates how exploring their relationship with death contributed to participants openness. 188 Figure 28 – Diagram Illustrating How Exploring Their Relationship with Death Contributed to Participant’s Openness 5.5.1 Exploring and Addressing Fears Around Death and Dying This subcategory captured how participants began to explore and address death-related fears and anxieties. Most participants expressed fears around death and dying; however, for some, exploring their relationship with death involved exploring and addressing these fears (P01, P03, P04, P05, P06, P09, P11, P12, P14, P18, P19, P20, P30, P31, P32, P35, P37, P40). For example, participant four stated: …the closer your relationship to death is and the more you have to deal with death the less fearful it becomes. Participants recruited in the initial and theoretical samples expressed similar fears and key issues. The most common death-related fears were fearing the process of dying, fearing a painful death, fear of losing control and the fear of leaving loved ones behind. In addition, almost all participants stated that they did not fear death; however, they had fears about the process of dying. The most frequently mentioned key issues when thinking and talking about death and dying were assisted dying, planning practically for death, preventing distress for those left behind, worrying about how their children will cope with death and quality of life. This study found that fears and key issues Death-related experience Recognising the benefits of openness Exploring their relationship with death Reducing fearsPromoting more openness around death and dying Typical death-related experience Spiritual/Near-death experiences Exploring and addressing fears around death and dying Reconceptualising death Exploring after-death beliefs Engaging with death (After-death beliefs) Engaging with death (Promoting more death awareness) Encourage/reinforce belief in the afterlife Enabling individuals to live life more meaningfully 189 around death and dying depended on the circumstances that participants were in at the time of this study. For example, relationship status, health, children and age all affected key issues and fears around death and dying. Although all participants talked about their death-related fears and anxieties, for some, exploring and addressing their fears around death and dying helped them to become more open to talking about it. As stated in section 5.4, some participants were prompted to recognise the benefits of openness in order to tackle fears around death and dying. Recognising these benefits prompted participants to explore their relationship with death to explore and address those fears. After the death of her husband, participant eleven started to contemplate her fears around death and dying to become more open to the subject. Recognising the benefits of openness, particularly around tackling death-related fears, prompted her to start actively thinking and openly talking about death. Actively thinking about and engaging in death-related discussions helped her process, acknowledge, and confront her fears. This participant believed that it is important for individuals to face their fears, as she has fears around death and dying; she believes she needs to be actively facing and working on these. For example, when asked why she feels open to having death-related conversations, she stated: Erm, because it helps me process, err, I think when we speak, we think, and we process lots of things, and also when I speak with others I receive, erm… So, today, for example, I’m speaking, and you are listening, but I’m still processing. If I speak with my friends, they will say something that they think. So, that’s also the second level contribution and also, I’m very much into facing things that we fear. Err, I think there is nothing worse than fears which are swept under the carpet. So, I’m usually really into that confrontation of your fears, and since I have fears around death, I think, I think I need to be actively facing them and working on them. She suggested that she learns from every conversation and sometimes initiates death-related discussions to find comfort through those conversations. For this participant, exploring her fears around death and dying via talking with others has helped her to acknowledge and tackle her fears. As a result, she continues to actively engage in death-related conversations to encourage more openness around the subject. Participant thirty-eight became more open to death-related discussions after exploring and addressing his fears around the subject. Participant thirty-eight’s fear of death was so debilitating that he started to experience fear-induced episodes. At first, he did not want to seek help; however, 190 his wife encouraged him to see a therapist. After five months, he stopped attending the therapy sessions, and the episodes began again. At this time, he did not engage in any death-related conversations with others as he believed that talking about the subject would only make it worse: Again, my way of thinking was if I don’t talk about it, I won’t think about it until the episodes began again. This time his death anxiety was affecting his health (panic attacks, pain in his chest, breathing difficulties). He sought medical advice and was urged to see a mental health specialist. The specialist provided him with coping mechanisms which enabled him to start actively thinking and openly talking about death without leaving him with debilitating fear: It was a great experience which helped me a lot and despite my previous thoughts, focussing and talking about death made it easier for me to handle. Since then, I have been more willing to talk about Death with those close to me and others. Exploring his fears and working through them by talking about his concerns has prompted him to recognise the benefits of openness towards death. Recognising these benefits encourages his continued openness towards the subject: I know that being open about it and wanting to talk about it is a good thing for me unlike when I was younger and keeping it all bottled up and to myself. It’s one of the reasons I wanted to be involved in the study, it’s a chance to talk about it openly. I don’t think the topic will ever get easier to talk about, in fact it’ll probably get harder as I get older. It’s hard to face one’s mortality. My relationship with death is a strained one, but after my own experiences I would always advise others to talk about it openly and in a safe place. Exploring his relationship with death via exploring and addressing death-related fears has encouraged this participant to become open to death. Actively thinking, talking, and engaging with his fears has helped him acknowledge, confront and address them, resulting in a greater willingness to talk about death with those close to him. This example shows the benefits of openness in tackling death anxiety and preventing mental health conditions such as anxiety disorders. Additionally, this could suggest that talking about our death-related fears could help individuals to feel more in control of their fears. Moreover, four further participants stated that attending counselling and therapy sessions contributed to more openness around the subject (P03, P04, P10, P11). For three participants training to become a councillor helped to encourage more openness around the subject (P03, P04, P10). Becoming a councillor urged participants to explore their thoughts around death, including 191 fears, helped with personal development and provided them with the skills to navigate such conversations with others. These participants accredited training to be a councillor with why their openness changed over time. Additionally, two participants indicated they were compelled to look for a therapist after a particular death-related experience (P03, P11). For example, after participant three’s cancer diagnosis, she found it difficult to talk to others about how she felt as the way people spoke about cancer did not resonate with her: So, when they talked about you’ve got to fight it, or you’ve got to kick cancer’s ass or whatever… that, that just put me off completely... As a result, she felt isolated, and her therapist was the primary person to whom she could talk. Similarly, the death of participant eleven’s cousin prompted her to search online for someone to speak to: It was a shock. It was a huge shock. Err, I was very upset. I, I had terrible panic attack. I couldn’t cope with that. I, I actually, I remember desperately looking for someone to talk to and I, I went online, and I found a therapist. This could suggest that individuals may seek out professional help when either themselves or others are reluctant to engage in death-related conversations. Participants stated that attending therapy and counselling sessions encouraged them to explore the topic of death and air out their concerns in a safe and supportive environment. This suggests that encouraging others to think about and facilitate death-related conversations could help people to work through their fears, thus promoting more openness around the subject. For two participants, exploring their relationship with death as part of training to become a death doula encouraged more openness around death. For example, participant nine explained how exploring her relationship with death enabled her to reflect on her fears, beliefs and past experiences of death, which contributed to her becoming more open to thinking and talking about death and dying: Again, I think I’ve become so much more comfortable after doing the doula course. I think, erm, it’s a fascinating course and it, you have to go very deep within about your relationship with death... The fundamental thing we miss is that we don’t start off with, what does death mean to you? How do you feel about death? So, unless you explore it within yourself it's very difficult to have those conversations with other people… We all bring to it all our experiences of life and that has an impact on that, and I think that’s again with death, if you’ve had a bad 192 death within your experience personally or professionally it will have an impact on how you approach death. You know, you may not realise it but until you explore that and unravel it, you know, and I think the doula course made me unravel a lot of what I thought I was doing right and rethink it in a different way. Similarly, participant four also became more open to thinking and talking about death and dying after completing the death doula training. She explained how exploring her relationship with death and reflecting on her previous death-related experiences helped to relieve her death-related anxieties: When you’re training as a doula, you look at your own vision of what a good death will be. You talk about it. We ask what does death mean to me? And this helps you to recognise recognise… this helps you to recognise and enables you to take stock of your life and the more you have to do with death… relieves your anxiety. So, we do a lot of reflective death work about our relationship with death because that's what… whatever work you do around death, it's about you and your relationship with death. That's what it's about and the more you understand about your own relationship with death the more you can listen to somebody else talking about death and the more you become open… you can understand. These responses almost mirror each other. Participants four and nine both attended the death doula training, which they attribute to their increase in openness. Training to become a death doula must require a certain degree of openness to begin with; however, both participants suggested that exploring their relationship with death via reflecting on their thoughts, feelings, and previous death-related experiences relieved death-related anxieties, helped them to reflect on their perceptions of death and enabled them to better facilitate death-related conversations with others. This could suggest that exploring the possible impact and meaning of death for us could promote more openness by encouraging individuals to become more familiar with it. 5.5.1.1 Engaging with Death (Promoting More Death Awareness) Prompted by their death related experiences and recognising the benefits of openness, participants began to actively engage with the subject of death. This category captured how engaging with death helped to reduce fears and promote more openness around death and dying. This subcategory relates to the previous subcategory ‘Exploring and addressing fears around death and dying’ as participants started to explore and address death-related fears by actively engaging with the subject. For these participants, engaging with the subject of death enabled them to reconceptualise fears around death and dying, become more death-literate and raise their death awareness. For example, participant thirty-five stated: 193 …I guess the fact that I'm quiet, erm, I’ve sort of immersed myself in it quite a lot. I feel my death consciousness is a bit higher than some people. Does that make sense? Participants started to engage with death in a variety of ways such as reading, watching documentaries, attending events, exploring how other cultures deal with death and becoming part of the online ‘death space’. For these participants, engaging with death promoted more death-awareness, helped to ease death-related fears and contributed towards more openness around the subject. Additionally, engaging with the subject of death prompted participants to view death as a natural part of the life cycle, provided them with information and resources to explore further (encouraging their continuous engagement with the topic) and encourages them to continually reflect on morality by integrating death as part of their lives (death is now more than a concept): …but since I’ve invested more in working through my thoughts on my own death, for me, death is more than a concept – it is real and I more accepting and ready for my death than at any other time in my life. For some participants following death positive pages on Facebook and Twitter contributed to their openness around the subject (P19, P31, P32, P37, P35). Following online death positive pages encouraged participants to actively think about and engage with the topic of death. Participants stated that following such groups encouraged them to continuously engage with the subject of death raising their awareness on all things death related. For example, participant thirty-five stated: I have filled my Twitter timeline by following lots of people in the death space: end-of-life doulas; alternative burial options; cemetery/graveyard tours; death studies/courses; numerous podcasts all of which have helped raise my death awareness/consciousness. As I said, the spectrum is just so wide and it’s just, you know, erm, there's always something interesting to read about or whatever it might be. Social media just keeps it… it just keeps it in my awareness, I think. Erm… yeah. Participants who took part in both stages of theoretical sampling were recruited from death-positive Facebook pages and groups, therefore, this could explain why participants stated that following death positive pages online have contributed to more openness. Additionally, three participants suggested that exploring how other cultures deal with death has contributed to their openness around the subject (P06, P20, P35). Participants explored several topics, for example: • Differing views on how other cultures perceive and deal with death 194 • Alternative death rituals • Treatment of the body after death • Grieving practices • Death-related holidays and celebrations. Death-related holidays such as Mexico’s Day of the Dead was frequently mentioned by participants in reference to how death could be normalised within the UK. Participants stated that learning about cultures caused them to reflect on and challenge cultural biases around how death is perceived within the UK. This could indicate that learning about other cultures and their death practices could promote more openness around the subject. For instance, when asked why participant six felt open to death-related conversations, she stated: All these little things that have happened along the way have helped me. Especially seeing how other culturally quite different people do it, and I like that better. Additionally, participant thirty-five stated: I think definitely, yeah that's… that's… erm, just definitely, erm, being aware that, erm, that other cultures are more… appears to be more open, more accepting, erm, that death is one of those things that happens and it, it, it’s usually more integral to their way of life than what I've experienced maybe in in this society. That it’s very much a closed, a closed thing, shutdown mostly. Erm, so I… that definitely… that's definitely kind of made… I think made it… probably made… possibly made it easier for me to be sort of talking about it, going to death cafes. Erm, yeah, I definitely would say that. Similarly, participant twenty started to explore the subject of death after encountering different cultures and religions. As stated in the category ‘Death-related experiences,’ participant twenty’s openness towards death and dying started to change after exploring how other cultures deal with death: As it was, I soon realised that other cultures had different customs associated with the dead and different thoughts about the “soul” etc. I was forced to start my mental voyage by such contradictions. We are all human animals. Why should certain groups have a different outlook? Religion was a significant influence in his early life. He explained how he accepted the Christian teachings instilled in him as a child because he had no alternative thoughts to investigate and, as a result, he inherited an “inhibition regarding any real discussion about death.” However, his travels prompted him to explore and question these beliefs. He started to actively think about death, in 195 particular what happens after death and began to read about different religions, cultures and death more generally. He explained how exploring his beliefs around death has contributed to his openness around the subject: I am sure that exploring my ideas and beliefs has relieved me of early inhibitions about discussing death. Similarly, for some participants attending death cafés has contributed to their openness around death and dying (P03, P19, P31, P35, P40). Death cafés provided participants with a safe space to explore the subject of death and engage in open conversations around death and dying. Participants also stated that attending death cafés provided them with resources and information about a broad range of death-related topics which prompted them to further engage with the subject of death. Attending death cafés prompted participants to actively think about death and encouraged them to engage in death-related conversations with family and friends. For instance, actively engaging with death-related subjects prompted participant thirty-five to attend a death café. Attending the death café helped participant thirty-five to solidify his thoughts around death and dying. He explained how being able to talk openly and honestly about death and dying with others helped him to view death as more than just a “concept”: So, I think I've made that transition from, you know, reading books, looking at, you know, all the stuff that comes up on Twitter, to then going to a death café… … So, so, for me is death, it sort of crystallised a lot of what I... those thoughts I’d had from just reading about it it makes it a bit more real as well because, you know, when you start to talk to somebody, you’re… it… you’re taking it out of your head and you’re putting it out there and sometimes just saying those things is helpful as well, even if nobody else agrees with you, it's not really about that, it's just about expressing how you think. So, the whole… just the whole process of of just chatting with different people, again just helps, sort of, helps me… helps with how I'm thinking about death. For some participants attending death cafés has encouraged them to create more opportunities to engage in such discussions with others. For example, participant thirty-five was motivated to engage in death-related discussions with his children after attending a death café: The Death Café experience led to starting a WhatsApp group for myself and my three children – aptly called Dad’s Death Café where we have started conversations around my end-of-life planning. 196 Participant three started to explore the subject of death after her cancer diagnosis. As stated in section 5.3, ‘Death-related Experiences,’ she started hosting death cafés, attending death positive festivals and reading about death-related topics. After her diagnosis, she needed time to recover. During this period, she discovered and started running her own threshold choir. The threshold choir sing to those dying to bring ease and comfort at the end of life. Both herself and other members of the threshold choir would engage with the subject of death to prepare themselves for singing to those at “the thresholds of life” by conducting death cafés and watching death-related documentaries (Terry Pratchett: Choosing to die): I was running this choir and meeting every week and, erm… we also wanted to talk, engage with the subject of death together because sometimes people have a fear, what if I'm at the bedside and I become overwhelmed with emotion? So, to try and, erm, to prepare ourselves, we, we would do things along the lines of a death cafe for example. Sitting together just talking about our thoughts and feelings about death, of ourselves and our loved ones. Erm, and occasionally we would watch a film together. There's a film by Terry Pratchett about, erm, assisted dying, the author, Terry Pratchett. So, we, we watched that together, and we talked about that and things. So, we had… just every now and then we would do this sort of diving into some aspect of death together and talking about it, and I think that that was, erm, really helpful. She explained how engaging with death helped her to become more “death-literate”. As she became more “death-literate,” she began to recognise the benefits of embracing death and accepting it as a natural part of our life cycle. This suggests that encouraging individuals to become more death-literate could promote more openness around death and dying. Death-literacy is defined as knowledge that enables individuals to understand and gain access to end-of-life care options (Noonan et al., 2016). Therefore, encouraging death literacy could inspire individuals to begin actively thinking about and discussing end-of-life care. Additionally, two participants specifically referred to Kathryn Mannix when talking about actively engaging with the subject of death. Participant nine explained how watching Kathryn Mannix’s video on death and dying, helped her to facilitate death-related conversations with her patients. Although this did not contribute to her openness, it has helped her to open-up death-related conversations with others. The video describes the process of dying and how dying is often a quiet peaceful experience: 197 Her [Kathryn Mannix], she’s got a video about what happens when somebody dies which is lovely, erm, and has helped me sort of articulate into words what I’ve been feeling. She’s put it in a context, so, it’s really helped me with when I’m talking to patients… Participant thirty-five also mentioned Kathryn Mannix. Reading Kathryn Mannix’s book ‘With Death in Mind’ has helped participant thirty-five think about death-related fears and anxieties: … so, Kathryn Mannix’s book ‘With Death in Mind’ is again just another really interesting perspective of taking away some of that fear of what people might have when they think they're going to die, it’s not always as bad as what you think. So, again just just reading as broadly as possible just breaks it down. You know, it's not this, you know, thing to hideaway in the corner and, erm, leave it until it is too late kind of thing. For these participants, engaging with the subject of death reduced fears, raised their death awareness, and resulted in more openness around the subject. Engaging with the subject of death has encouraged participants to integrate death into part of their lives. This could suggest that engaging with death-related topics may help individuals to explore and address fears around death and dying, thus, encouraging more openness around thinking and talking about death and dying. Similarly, engaging with death created more opportunities for participants to explore this theme further, which plays a role in their continued openness towards the subject. For these participants, raising their death awareness helped them to familiarise themselves with death, inform them about all things death-related and feel better equipped to manage death. 5.5.1.2 Reconceptualising Death This subcategory captured how exploring their relationship with death led participants to reconceptualise fears around death and dying. This category relates to the previous subcategories, 'Exploring and addressing fears around death and dying' and 'Engaging with death (Promoting more death awareness)'. Participants started to engage with the subject of death to explore death-related fears. For these participants, exploring their relationship with death helped them to reconceptualise their fears around death and dying (P01, P05, P11, P12, P13, P14). Engaging with the subject of death encouraged participants to reconceptualise death by reducing fears and changing worldviews. For instance, participant five explained that she became more open to thinking and talking about death and dying after reading Stephen Jenkinson's book 'Die Wise' and watching his documentary 'Grief Walker.' Actively engaging with the subject of death encouraged her to reconceptualise and change how she thinks about death and dying: 198 …but the most, the most important person who has helped me think about death and, you know, reconceptualise how how I think about death is, erm, when I came across Stephen Jenkinson. … he's worked in palliative care for many, many years, and he's been at the bedside of, you know, lots and lots of people who've died, and he... there's a documentary on on… Grief Walker. So, I watched Grief Walker, and it changed, it changed how I thought about death. Because of his pragmatic approach to death and dying. This idea that, well, why not you? Erm, you know, death… he comes out with these one-liners which just stay with you like, erm, stuff like, erm, I’ve forgotten now, but things like, you know, death is a faithful companion, right? The notion that it's always with you and always will be with you, and you should, you know, you shouldn't be, err, frightened of it… and he talks about what we’re frightened about around pain, you know? So, that when we think about dying, what we're really worried about are things like pain, but, you know, in, err, but apparently, pain can be controlled, but why are people still frightened of dying? For this participant, reading Stephen Jenkinson’s book helped her to reconceptualise her fears around death and dying. She explained how his pragmatic approach to death has helped her to become calmer, "less neurotic", and "more level-headed" about death and dying. Watching, reading and listening to death-related topics helped this participant to become more open to thinking and talking about death and dying; however, she suggested that this is only in relation to thinking about her fears around her own death, not the death of those she loves. Similarly, for participant one, exploring his relationship with death via engaging with the subject has helped him to reconceptualise his death-related fears. Participant one’s fear of death, particularly around the unknown or nothingness of death, triggered reoccurring nightmares. However, exploring his fears around death via engaging with the subject has helped him to reconceptualise his fears: Just nightmares, like, thinking, just the terror, like that poem said. Just the terror of there being nothing. Nothing at all, just gone, you know, never being back again, and I think the more you learn about things and read and get educated properly, you realise that it's silly thinking. At the time, it was just an irrational fear. Similarly, participant twelve describes her 50th birthday as a turning point moment where she started to think, explore and actively engage with the subject of death. Exploring death via reading around the subject has helped to reconceptualise her death-related fears: 199 … and also, then I thought, no, don't shy away from the subject of death because it's going to happen and you think about it and, erm, I do read books, I read things about death and, yeah, it's helped my fears. Erm, I've been think… I think there's got to be a positive reason for thinking about death rather than a negative; think of the positives. I know it sounds strange that, but if you can think of the positives around death and why it happens and stuff, rather than the negatives, thinking, oh, God, I don't want to be by myself, or I'm going to be poorly. Sounds silly, I know. This notion of wanting to reconceptualise death so that it is not solely seen negatively was also proposed by other participants (P11, P13, P14). For example, participant eleven stated: Erm, I think I'm, I'm also very much into searching, erm, for my own sort of growth and understanding and reaching a point where death, erm, is seen sort of not solely in that negative, painful way, but I kind of incorporate it more into, erm, my life, my philosophy of life, how I think but predominately how I feel because I think on a cognitive level I can be very philosophical about it but for this to be emotionally, erm, really sit there and you having complete peace with that, I think that's the difficulty. Additionally, participant fourteen also suggested that exploring her relationship with death helped her to reconceptualise her fears around death. Becoming open to thinking and talking about death and dying was a very conscious part of her personal development. Being unbaptised and attending catholic school as a child, she went through a phase of fearing death. However, becoming a parent, recognising the benefits of death-related conversations, and exploring and addressing her fears around death, encouraged her to reconceptualise and change how she thinks about death and dying: I think I've only, like, in recent sort of maybe five years really reconceptualise that into death is more for me about living life now. Err, rather than living my life in fear of death. I'm living my life, enjoying life. For these participants, exploring their relationship with death has helped them to reconceptualise their fears around death and promote more openness around the subject. Participants stated that actively engaging with the subject of death led to the realisation that some fears are irrational, such as the fear of nothingness after death, or death-related issues that can be controlled, such as pain. Additionally, reconceptualising fears around death prompted people to see the positives of more openness towards death, resulting in a greater appreciation for life. 200 5.5.2 Exploring After-death Beliefs Participants frequently mentioned after-death beliefs when talking about how they explored their relationship with death. This subcategory captured how after-death beliefs promoted more openness around death and dying. For example, twenty-two participants suggested that their beliefs around death and dying helped them to become more open to the subject (P01, P02, P03, P07, P08, P10, P12, P13, P16, P17, P21, P24, P28, P29, P30, P31, P33, P34, P36, P37, P38, P39). Most of these beliefs were around the existence of the afterlife; however, for four participants, their belief in nothing after death brings them comfort when thinking and talking about death and dying. Although after-death beliefs play an important part in comforting participants when thinking and talking about death, all participants suggested that their beliefs do not bring them comfort when thinking about the process of dying. As stated in section 5.3, ten participants said their spiritual beliefs have contributed to more openness (P01, P10, P12, P16, P17, P24, P32, P34, P36, P37). Eight of these participants' spiritual beliefs are the sole reason they feel open to thinking and talking about death and dying (P10, P12, P16, P24, P32, P34, P36, P37). However, like spiritual beliefs, some participants suggested that other religious beliefs, such as Buddhism and Christianity, have contributed to their openness (P02, P03, P07, P21, P28, P30). Participant’s after-death beliefs influenced openness in the following ways: • Comforting when thinking and talking about death and dying • Helps to promote acceptance of death (death is a natural part of life) • Helps to reframe death (puts death into a context/framework) • Reduces fears around death (seeing loved ones in the afterlife/death is only the end of the physical/the nothingness of death) For instance, four participants stated their Buddhist belief in reincarnation and existing in another form has comforted them when contemplating death (P03, P07, P21, P30). For example, participant twenty-one stated: The Buddhist philosophy brings me comfort because it reminds me all the time that nothing is permanent. Everything has a beginning, a middle and an end, a birth through to a death. Whether it’s the TV show you're watching, the season of Autumn or life itself, everything must come to an end, and then in some way shape of form is reborn. When we die, we are either buried or ashes scattered, and we transform into something new. Similarly, for participant three, her Buddhist beliefs played an important part in her openness towards death after her cancer diagnosis. She stated: 201 …following a spiritual path. So, doing meditation and… yeah, as I say the Buddhist principles of accepting what is and not resisting things, just that as a practise… so, I think my… yeah, there's something about all of that somehow expands, I expand so that I can see the bigger picture, and I can see life and death in a context. So, it's not just death is something to be avoided at all costs, it's part of, it’s part of everything and and not only that, acceptance of one’s own death, it's the fruit of being more emotionally mature and more wise, but also it enriches your life. Yeah, so I don't, I don't feel I fear my own death, there is a sort of acceptance of it. For participant twenty-eight, his Christian beliefs encourage his openness towards death. He suggested that because of his beliefs, he does not fear death as his beliefs provide him with a trusted framework to put death into. Similarly, participant two stated that he is open to death-related conversations because he does not fear death. He feels comfortable actively thinking and openly talking about death because of his after-death beliefs (either his Christian Quaker beliefs will be true, or there will be nothing after death). Although he is unsure about what will happen after death, he is comforted by the thought that death will either be a “wonderful experience”, or it will be “nothing”. Erm, I suppose, erm, I can see two possible scenarios when I actually die. Either my Christian beliefs in some kind of resurrection life and don't ask me the details because I couldn't really explain it to you, will be true and there'll be some kind of resurrection life, some kind of afterlife or if our, erm, logical positivist, reductionist, materialist culture is correct that will be the end. So, I can't see what there is to be afraid of… actual death itself seems to me either it will be a wonderful experience (laughs) you know, or it will be nothing. Contrastingly, four participants stated that their belief in nothing after death brings them comfort when thinking and talking about death and dying. Participants stated that they find the thought of nothingness after death “comforting” and “soothing” (P08, P13, P29, P33). This could suggest that atheism may also provide comfort when thinking and talking about death and dying. For example, participant twenty-nine stated: I’m not a religious person and I am comforted by the idea that once you are dead it’s all over. The idea that it might not be over seems very scary – living forever is a terrifying thought to me. Participant thirteen was also comforted by the thought of nothingness after death: 202 So, no one wants to go through the process of dying, but the actual notion of nothingness can be quite almost like comforting. It's kind of like a, erm, yeah, no more struggle or suffering kind of thing. This view is also held by participant thirty-three: This is my understanding of being dead: that it is, in a very absolute sense, no longer being. It’s a very complete idea of death. But it isn’t one I can honestly say I’m particularly scared of… At times in my life, it’s been oddly comforting, to realise that a day will come at some point in the future when I will no longer be, that my inner existence will cease entirely, and that the world beyond that point will very literally be none of my concern. I’m open about this subject because I have always been clear in my mind about what I understand death to mean. For me, I have always been sure that death is final. I have no worries about what might come next. I’m not expecting judgement, reward or punishment for the way in which I’ve lived. I’ll just not be here anymore. Participant thirty-three reported only finding this thought comforting when thinking about the world as a whole. He does not find it comforting to know that he will one day leave behind his children. 5.5.2.1 Engaging With Death (After-death Beliefs) This subcategory captured how exploring after-death beliefs via actively engaging with the subject has promoted more openness around death and dying. Relating to the subcategory, 'Engaging with death (Promoting more death awareness),' participants suggested that exploring and engaging with death-related topics around after-death beliefs contributed to their openness. Participants started to explore their after-death beliefs in a variety of ways, such as attending the spiritualist church, reading, exploring different religions, watching documentaries and learning about the spiritual and near-death experiences of others. For these participants, exploring their after-death beliefs lessened their fear of death and promoted more openness around the subject. As stated in section 5.3, some participants were prompted by their death-related experiences to explore their beliefs about death and dying. The most common death-related experience that encouraged participants to explore their beliefs were spiritual or near-death experiences (P01, P03, P10, P12, P16, P24, P34, P36). However, other death-related experiences such as 'Being faced with their own potential death' (P03), 'Experiences within work' (P20) and 'Experiencing the death of a loved one' (P18) also prompted participants to explore after-death beliefs. Death-related experiences encouraged participants to explore their after-death beliefs to reduce fears, help make 203 sense of their experiences and find comfort. Contrastingly, one participant started exploring his after-death beliefs after going through a divorce. Relating to the subcategory, 'Engaging with death (Promoting more death awareness),' engaging with material relating to after-death beliefs encouraged participants to explore and address death-related fears around what happens after death (e.g., fear of the unknown or the existence of an afterlife). Exploring different beliefs has reduced fears around death and promoted more openness. The most common experience that prompted participants to explore their after-death beliefs was a spiritual or near-death experience. As stated in sections 5.3.1 and 5.3.2, having a spiritual or near-death experience prompted participants to explore their after-death beliefs by engaging with the subject. For some, this involved actively engaging with materials relating to the existence of an afterlife. For others, this involved attending places of worship such as the spiritualist church. For instance, four participants began to attend the spiritualist church to explore their after-death beliefs. These participants started exploring their after-death beliefs to make sense of their spiritual experiences (P01, P24, P34, P36). Attending the spiritualist church reinforced their belief in the afterlife, which reduced fears and encouraged more openness towards the subject. For some participants attending the church prompted them to engage with additional sources of information about other after-death beliefs not associated with spiritualism. Three activities encouraged participants to explore their after-death beliefs whilst attending the church: • Reading about spiritualism • Demonstration of mediumship • Attending development classes As stated in section 5.3.1, ‘Spiritual experiences,’ participant twenty-four started to explore her after-death beliefs in order to make sense of her spiritual experiences (sensing her partner after death). She decided to join the spiritualist church, where she started to attend classes including a development circle and realised she was a medium. Exploring her after-death beliefs via engaging with the subject has reduced death-related fears and promoted more openness as now death holds no fear for her: I began to attend a development circle and began to realise that I am actually quite a gifted medium. I can't see Spirit people, but I can sense, hear and communicate with those who have passed. I now have no fear of death because I don't believe it's final, it's just a doorway that we have to pass through in order to accomplish the further development of our immortal soul. 204 Participant thirty-four also became more open to thinking and talking about death and dying after exploring spiritualism and attending classes at the spiritualist church. For this participant, attending classes, reading and watching YouTube videos on the spiritual experiences of others contributed to her openness around the subject. When asked how exploring her relationship with death had prompted more openness around the subject, she stated: The classes, the spiritual classes, the development… development of, erm, classes I used to go to once a week. Erm, I used to glean a lot of information, you know, from, you know, from them and as I say, what I’ve read and what I’ve seen on YouTube… Yeah, regarding getting my information, erm, I’ve had validation [communicating with the deceased – mediums]. Erm, and what I picked up in in classes [attending the spiritualist church], the TV and of the books. That's just reinforced my belief. I’ll never change it. I'll never never change because it's it's so strong. As stated in section 5.2.1, ‘Spiritual experiences,’ participant thirty-six was prompted to explore her after-death beliefs after encountering an apparition. She explained how the book ‘This is Spiritualism’ helped her to make sense of her spiritual experiences and prompted her to attend the Spiritualist church: It [the book ‘Forty Years a Medium’ - Ursula Roberts] kept referring to a book called ‘This is Spiritualism,’ by Maurice Barbanell, so I read that one afterwards in my lunch breaks. It was as if this man had all the pieces of my jigsaw (my thus far unexplained paranormal experiences and fledgling ideas) plus some and had made them into this picture called ‘Spiritualism’! Exploring her after-death beliefs has reduced her fears and promoted more openness, as she ‘knows’ now that death is not the end. This may suggest that exploring after-death beliefs could reduce death-related fears and promote more openness around the subject. Similarly, participant one started to attend the spiritualist church after receiving messages from loved ones. Attending the spiritualist church encouraged him to start actively thinking about and exploring his after-death beliefs: …I think well I've had some messages there must be something and at the same time, I think well why are we here if there's nothing else? What's the point of us? We're no good for anybody, are we? (laughs) Only for ourselves. So, I thought well there's got to be something, hasn't there? Perhaps we're here for a learning experience or I think… I've started reading all 205 of these books on different religions and I think there's got to be something that we're here for, you know? Exploring his after-death beliefs via reading about different religions helped this participant become more open to thinking and talking about death and dying, as it has encouraged the belief in an after-life. Whether or not the afterlife exists, the data suggests that exploring ideas around its existence can help to comfort individuals and reduce death-related fears, resulting in a greater willingness to think and talk about the subject. For four participants, learning about near-death experiences contributed to their openness around the subject (PO1, P03, P10, P34). Participants explored near-death experiences by reading about the subject, watching documentaries and YouTube videos, attending conferences and hearing others close to them talk about their NDEs. Participants stated that exploring near-death experiences promoted more openness by reducing fears and encouraging or reinforcing a belief in the afterlife. For instance, participant three became interested in near-death experiences after attending a conference by Eben Alexander. She explained how attending the conference changed her after-death beliefs: … they had about five days when several speakers came and talked about their experiences and it really rang true, what I was hearing rang true to me, and it changed my worldview. So, I think, I think before that I had thought well when I die, I just go back into the the the universe, you know? I didn't particularly believe in reincarnation; this bit that’s me goes somewhere and then it comes down again as another person. I mean… that just didn't ring true for me. So, yeah, but I, yeah, so, I guess I thought, well, there is this universal consciousness, my little bit of consciousness maybe just goes back into that, but this was saying something different. Erm, and I heard it from several different people and and it rang true, as I say, it rang true. I didn't feel like I was being conned by anybody. Erm, I could have taken it or left it, erm, but yeah. Attending the conference prompted participant three to start exploring the subject further. She began reading about near-death experiences (Anita Moorjani - ‘Dying to be me’/ Eben Alexander – ‘Proof of heaven’). Although this participant has not had a near-death experience, learning about such experiences has brought her comfort when contemplating death. … I think they all ultimately are saying the same thing which is really simple which is it's all love (laughs), love more, it’s all you need to do in life, is love more. Erm, you don't have to worry about it. 206 Other participants also stated that the commonalities between descriptions of near-death experiences raised their credibility. For example, participant thirty-four stated: Now, I've seen, you know, on the TV and read about [near-death experiences] … they all say the same thing. How can all these people that don't know each other all say the same thing. Like participant three, other participants also felt that the credibility of near-death experiences suggested they were not being deceived. For example, participant thirty-four stated: Erm, I used to glean a lot of information, you know, from, you know, from them and as I say, what I’ve read and what I’ve seen on YouTube and I can't help but think when these people give the tales of the OBES (out of body experience) and the NDE (near-death experience), they’re not just doing it for any monetary reason, you know, and they’re dedicated people, they’re… they’re scientists. This could suggest a reluctance to express beliefs around NDEs without feeling the need to justify or provide ‘proof’ for their beliefs. Although participants three and thirty-four did not have a near-death experience themselves, learning about such experiences reduced fears and encouraged after-death beliefs, which have promoted more openness. Participants also suggested that hearing known others talk about their spiritual or near-experiences has comforted them when thinking about death and dying (P01, P03, P16, P23, P36). These experiences were always transcendent and often involved seeing deceased loved ones. Hearing known others talk about their experiences has reduced fears, provided comfort and made death feel more manageable. For example, participant one stated that hearing about his father’s near-death experience eased his own fears around death: It made me less afraid because I thought well you know if he's seen that [afterlife], and I have no reason to be sceptical about it. Participant sixteen also provided a similar example. Participant sixteen’s friend had Multiple Sclerosis, and she was going through a particularly difficult period. Her friend initiated a conversation with participant sixteen about her general thoughts on death and dying. The participant told her friend about the spiritual and near-death experiences that she has encountered (Sensing loved ones after death/Receiving messages/Near-death experience). This was a positive experience for her friend as she found the conversation helpful and comforting: 207 She found that really (audio goes) … really helpful for her, do you know what I mean? Because it made her feel, erm, that she knows that, you know, obviously… her prognosis isn’t... erm and it made it more, erm, manageable for her. Do you know what I mean? In a way, erm, so, she was really pleased that we’d been able to talk about it. Another example is provided by participant thirty-six who described how relaying her spiritual experiences to others has brought them comfort when contemplating death. For example, she stated: I have had more contact with my son since then both directly and through others which is a great comfort to me and many others to whom I have told this. It was recently of great comfort to my next-door octogenarian neighbour who wanted to die but was afraid to. It turned out that, as a committed Christian, she was afraid of being judged. I was able to quell her fears with a description of what was likely to happen to her after death, and by saying that if my son, who had no particular religious beliefs, could be met by angels then I am sure she could be too. This could suggest that sharing stories about spiritual or transcendent experiences may change people’s attitudes towards death, making it easier to contemplate and talk about. For some participants exploring Buddhism contributed to their openness around the subject (P03, P07, P21). For others, exploring Buddhism functioned as a gateway to explore other death-related topics (P35). These participants began to explore Buddhism by reading Buddhist texts and books. The Buddhist philosophy promotes a profound awareness of death which helped to encourage participants’ openness towards the subject. Exploring Buddhism helped to promote openness in the following ways: • Encouraging death acceptance • Viewing death as a natural part of the life cycle Participants frequently mentioned the concept of impermanence and the idea that from a Buddhist philosophical perspective, “there is no death, there is no dying, there is only transition”. Participants stated exploring Buddhism has helped them to accept death as a natural part of our life cycle. For example, when asked how Buddhism had encouraged more openness towards death, participant seven stated: Erm, I think it’s something that, erm, the kind of, the, the, the text that we study. Erm, so, erm, the Buddhism that I practice is a Japanese form of Buddhism, Nietzsche Buddhism, erm, 208 and so, we, erm, we read the writings of Nietzsche and Dionysian, and he was like a Buddhist monk. Erm, he wrote all these amazing letters, and we study them, and he talks about death in them. … and the president of our organisation he’s written several books about death and dying. So, you know, we kind of just regularly look at it and consider it, erm, because it’s, you know, we, the whole idea is not that we focus specifically on death, but we talk about life, and life and death are completely intertwined. Additionally, participant thirty-five first started exploring Buddhism after going through a divorce. He suggested that two aspects of Buddhism raised his “death consciousness”: the concept of impermanence and seeing how other cultures view death. In contrast to other participants, for this participant, exploring after-death beliefs did not encourage a belief in the afterlife, instead, it helped to confirm his belief that it is impossible to know what will happen after death. However, his interest in Buddhism prompted him to explore how different cultures and religions deal with death. This led him to start actively engaging with the subject of death through reading, attending Death Cafés and following death-related groups on Facebook and Twitter, as stated in section 5.5.1, ‘Engaging with death (Promoting more death awareness)’. In doing so, he started to actively think about his mortality, which resulted in him openly discussing his end-of-life wishes with others. This could suggest that exploring after-death beliefs could be a gateway to encourage individuals to explore more sensitive topics, such as end-of-life care. Similarly, for participant thirty-one, exploring and engaging with the subject of death, in particular exploring after-death beliefs, contributed to a change in her openness around the subject. Although she experienced death during childhood, her parents protected her from these experiences. Becoming a Religious Education teacher enabled her to openly engage with death-related topics, which had previously been considered taboo by her parents: When I was 18, I studied to be a teacher. My main subjects were Education and Religious Studies. Suddenly it was okay to explore thoughts about death, dying and different beliefs about the afterlife. This was a very meaningful and important part of my journey as I thought about what happened at the moment of death, where the soul may go and why some people believe in reincarnation. For these participants exploring after-death beliefs via actively engaging with the subject has promoted more openness around death and dying. For some, exploring after-death beliefs encouraged or reinforced their belief in the afterlife, which reduced fears and promoted more openness. For others, exploring after-death beliefs encouraged them to explore the broader topic of death further. This could suggest that exploring after-death beliefs could provide people with a non-209 threatening way to engage and connect with the subject of death and dying, thus, leading to more openness. 5.5.3 Enabling Individuals to Live Life More Meaningfully This subcategory captures how exploring their relationship with death inspired participants to live life more meaningfully (P03, P04, P09, P14, P21, P27, P28, P29, P35, P37). Although this realisation did not lead to more openness, reflecting on this encourages participants to remain open to the subject. Participants frequently mentioned that exploring their relationship with death led them to live life more meaningfully because of the following reasons: • Having a greater awareness of death • Becoming more familiar with death • Viewing death as natural (a natural part of the life cycle) • Developing acceptance of death In discussing how exploring their relationship with death led participants to live life more meaningfully, participants frequently mentioned that they had accepted death. For most participants accepting death resulted from reflecting on previous death-related experiences, exploring and addressing death-related fears and exploring after-death beliefs. Although participants frequently mentioned that they accepted death, this was not to say that participants welcomed death, only that they acknowledged it as a natural part of our life cycle. Participants often highlighted death's "natural" or "inevitable" nature when discussing how exploring their relationship with death led to more death acceptance. Accepting death as natural or inevitable might be easier for those not imminently facing death or those not recently bereaved. However, participants acknowledged that their openness and acceptance of death might change if their death felt more imminent, such as after receiving a terminal diagnosis. However, as it stands, for these participants accepting death as a natural part of the life cycle contributed to their openness around the subject and enabled them to live life more meaningfully. For example, participant four stated: Yes, one-day I’ll die, don't sit there when you're 20 thinking about, oh, do I do that? Just do it. What's the worst thing that's going to happen? It's going to happen anyway. You’re going to die. So, do it. That's how I've lived my life, but I think I've been able to do that because I've got an open relationship with death. Participant three also held this view. Participant three started to explore her relationship with death after her cancer diagnosis. Thinking about her mortality and exploring her relationship with death (exploring beliefs around death and dying - the Buddhist principles of accepting what is) prompted 210 her to recognise the benefits of accepting death as part of life. She believes that acknowledging that death is a definite reality reminds us that we are only here for a brief time on this earth and, therefore, we need to make the most of every moment: I think that avoiding and… avoiding contemplating one’s own death, I think you're missing out on something that's valuable. Erm, I think having that perspective of ones… you know, what, what if, what if my death… what if my life ended in next year? What would I want to do this year? So, it can give a… extra, erm, clarity or urgency to to live more freely and more joyfully and to to not put things off. Erm, yeah, so, I think I'm… I’m regarded by my friends as a very good example of somebody who (laughs) who doesn't hold back and I actually… leap, leap into things and, you know, if I get an inspiration to do something, I'll do it, just as a way of exploring and if it turns out that's not… it… that's fine, at least I checked it out. So, I do live life very, erm, enthusiastically (laughs) because I… you know, working as a doctor, err, for 28 years, you're supposed to work for 40 years to get your pension, of course, erm, people were incredulous that I would give that up, and whereas for me, the main thing was… the juice had just gone out of it, and and to have kept going with something that just… because you’re supposed to, why would I do that? and of course, there are things like security, pension, money etc, but if you see your life in the context of your finite, it’s finite and your health is finite and your fitness… erm, so, yeah, make the most of your life and yeah. Participant fourteen also suggested that actively exploring her relationship with death encouraged her to live more meaningfully: So, yeah, I do fear death, but I'm also accepting about… and I think that's really important to me, from fearing to acceptance, to ultimately live your life and be okay with, with it, accept that it is… because there are people that are just wandering, wandering around, some of my friends, erm, who are just, sort of, they just go, I can’t, I don't want to talk about it, they, you know, and they just want to like live their lives. They (inaudible) and just get through the week and get through, you know, their next holiday or whatever. Erm, but I think, ultimately, to make your life meaningful, you've got to, you've got to do something to make it meaningful. For me, that has to be in relation to thinking about my death. For these participants exploring their relationship with death has given them a greater appreciation for life. Instead of fearing the inevitability of death, participants have chosen to accept death as a natural part of our life cycle enabling participants to fully live in the present moment. For these participants, death is not solely seen in a negative light; instead, thinking and talking about death can benefit how we live our lives – a way of celebrating life and focusing on what is important. This 211 could suggest that more openness around death and dying could not only help us to die better but also live better. 5.6 Conditions and Context for Openness This category captured the conditions and context for openness towards thinking and talking about death and dying. This category is not part of the process behind how these participants began to actively think and openly talk about death and dying but instead explored the conditions and contexts that influence the core category of openness. Although the inclusion criteria stated that potential participants must be open to thinking and talking about death and dying, after the initial interviews, it became apparent that whilst participants were open to the subject, openness varied between participants. Openness varied depending on whom they were talking to and what aspect of death they were talking about. Participants were more open to talking about spiritual aspects and less open to talking about the emotional aspect of death. The data also revealed that, although participants were open to death-related discussions, some participants do not engage in them because they assume that others are not open to this type of discussion. Moreover, it became apparent that societal norms around talking about death influenced participants' openness towards engaging in death-related conversations with others. For some participants, the perceived societal beliefs of others around talking about death hindered and sometimes prevented death-related conversations. Participants suggested that death is viewed as 'taboo', and this belief is embedded in our culture at a societal level, therefore, perceived societal beliefs around talking about death have placed boundaries on opportunities to engage in death-related discussions. This category consists of five subcategories: 'Different aspects of death', 'Conditional openness', 'Influence of perceived societal beliefs’, 'Others unwilling to engage in death-related conversations' and ‘Promoting more openness.’ ‘Promoting more openness’ is not part of the process behind how these participants began to actively think and openly talk about death and dying, instead it explores how participants believe that more openness around death and dying can be achieved. Figure 29 depicts the conditions and contexts that influence the core category of openness. Below I have outlined the conditions and contexts that influence the core category of openness. 212 5.6.1 Different Aspects of Death This subcategory captures how participants' openness towards thinking and talking about death and dying varied depending on which aspect of death they were talking about. Participants indicated that there are different aspects of death and thinking and talking about these aspects requires different degrees of openness. For example, participants stated that there are practical, emotional, spiritual, philosophical, factual (biological), and religious aspects of death (P01, P07, P08, P10, P11, P13, P14, P20, P27, P33, P38). Participants were most open to talking about the religious, spiritual and philosophical aspects of death and were least open to talking about the emotional side of death. For example, participant fourteen stated: I could talk about death being a process with anybody but death being an emotional thing, with anybody, no, I wouldn’t feel comfortable talking with anybody about it. I suppose you've got both this religious and non-religious, for want of a better term, aspect to it. And erm, for me, you’ve got death as factual, the process biologically what happens, and then, death as the emotional. And those two things are quite, quite separate. So, erm, for example, I can, I can talk about death and the process of dying, and erm, what happens, you know, everything biologically stopping. But then when I think of it in the context of someone that I have loved or known who has died, that is very different, it's nonfactual, it's Openness Different aspects of death Conditional openness Others unwilling to engage in death-related conversations Influence of perceived societal beliefs openness • Religious, spiritual, and philosophical • Emotional • Biological • Practical Reinforcing the belief that death is taboo Openness changes depending on whom participants are talking to Concerns around: • Embarrassing others • Eliciting fear • Upsetting others • Making others feel uncomfortable Preventing/hindering death-related conversations Assuming death is taboo for others Figure 29 – Diagram Demonstrating the Conditions and Contexts That influence the Core Category of Openness 213 much more emotional. Erm, and I find it harder to get my head around. Does that make sense? This participant was open to death-related discussion because she recognised the benefits of such conversations; however, she still found it difficult to engage in death-related conversations with others about the emotional aspects of death. Participant fourteen stated that she has always been able to talk about the biology and mechanics of death but talking about the emotional aspects of death required a certain level of maturity. I needed a lot of emotional maturity to be able to guide, to have these conversations, you know… which… say with my grandmother, for example, which a lot of people can feel really uncomfortable about, but to be able to deal with that properly, it's having that emotional maturity to go… do you know what, this matters to her, not you. Needing emotional maturity to engage in conversations around the emotional aspect of death was also suggested by participants three, eleven and thirteen. These participants suggested that emotional maturity came with age and experience. Participant eight suggested that there are two aspects to death (thinking about death emotionally and thinking about death practically). This participant finds it difficult to think about the emotional side of death; for him, the most important thing is to prepare for death practically: I think it's a different thing thinking about the emotional side of it and the practical side, I think. I mean it’s just that, you know, I, you know, I mean, I don’t like thinking about those things [the emotional side of death] but, erm, I, err, for me the most important thing is, I’ve said, you know, is, it’s just, again it's practical, get everything done, sorted and ready, you know? And that takes over more than the emotional side for me at the moment. Participant eight had been diagnosed with cancer; therefore, his emphasis on the practical aspect of death could be due to the immediacy of his current situation. Participants also acknowledged that their openness might change if their death felt more imminent, such as after receiving a terminal diagnosis. For most participants, conversations around spirituality, philosophy and religion were the easiest death-related conversations in which to engage. These conversations had little significance for these participants other than intellectual debate and consideration (P02, P03, P10, P11, P13, P14, P20, P29, P33, P35). However, for participants who had encountered a spiritual experience or held strong 214 spiritual beliefs, these conversations were more meaningful and difficult to discuss (P01, P07, P12, P16, P34, P38, P39). For these participants, their reluctance comes from a fear of being ridiculed or being labelled as “crazy,” “weird”, or “different.” For example, participant thirty-four stated: … you see I can’t talk to normal people (laughs) because they don't want to know, or they think you're a bit doolally… Similarly, for participant sixteen, although her spiritual beliefs and experiences promoted more openness around the subject, she was reluctant to engage in this type of discussion as she believed that others may not understand her beliefs: … you know, there’s certain people who could be so dismissive, it would, could become quiet, erm, they would, they would look differently at you, do you know what I mean? Thinking that you're a bit like, hmm, something seriously wrong with this woman. Do you know what I mean? And so, you know, you don’t tend to go, oh, yes, well, this is what I believe, you know, erm, but, but people that I feel comfortable with, erm, I can talk about it. Participant thirty-nine also held this view: I’ve always thought of myself as a fairly spiritual person, I don’t tend to talk about it a lot but when I’m around the right people it comes out a bit… During interviews, a reluctance to engage in conversations around spiritual beliefs and experiences was also present. Although having a spiritual experience has had a profound impact on the lives of these participants, some participants were reluctant to talk about these experiences (P01, P16). During the interviews, two participants would go back and forth between explaining their experience and then trying to justify the experience. For these participants, it seemed as though they were waiting to see my reaction before going into detail about their spiritual experiences. It was almost like they were waiting for permission to talk openly about this experience. For example, here are some quotes taken from participant one’s interview: It's not evidence, is it? It's [receiving messages from loved ones after death] not proof but for me it's proof, and I was happy with that and there are other little things like that that have happened you see, and I thought well sceptics will say there are reasons for it, but I believe it. Even though it's not evidence really, is it? I'm crackers, aren't I? 215 5.6.2 Conditional Openness This subcategory captured participants' apprehension at navigating death-related conversations with specific individuals. Although participants indicated that they were open to death-related conversations, for some participants, their openness changed depending on to whom they were talking (P01, P05, P12, P13, P11, P14, P29). Some participants stated that they would find it most challenging to initiate death-related conversations with close family, and others suggested that they would find it difficult to initiate and partake in death-related conversations with those that are elderly or ill. Participants were reluctant to engage in death-related conversations with specific individuals for fear of upsetting, burdening or triggering others. This could suggest that the sensitive nature of such conversations could restrict with whom these conversations are held and the contexts in which these conversations arise. For example, participant twelve stated that she does not engage in death-related conversations with family because she does not want to "burden" them. She explained that she would find it hardest to talk to her sons about death. She wanted to protect her children and did not want to upset them. As a result, she would only initiate these types of conversations when it is absolutely necessary. Additionally, participant five suggested that she has avoided death-related conversations with family and friends since her mother's cancer diagnosis. She explained how "it's a word… that nobody wants to hear at the moment" within her family. Like other participants, although she was open to death-related conversations, she did not want to engage in them for fear of upsetting others: So, I’m happy to talk about death but with with the current situation that I’m in [her mother’s cancer diagnosis], it's alright to talk about your death or his death or their death but but I don't want to upset people around me. Even though in my mind I know that it's ridiculous that that we're doing that. Participant thirteen stated that he would be anxious to bring up the topic of death with individuals that were elderly or ill for fear of “triggering them.” He felt comfortable bringing death up in an intellectual way, but if someone was “old” or “sick,” he would wait for them to initiate such conversations. This participant felt concerned about the appropriateness of death-related conversations with those whose proximity to death would be much closer than his own. Similarly, although participant twenty-nine would like to engage in death-related conversations with her parents, she felt anxious about how such conversations would be received: … in a way, maybe, it would be kind of nice to speak to my parents about death but then it does also… that also still feels quite difficult and I'm not sure how they would take it. 216 Additionally, participant twenty expressed concerns about raising the topic of death with someone who had been recently bereaved: There is always of course the possibility that bringing up the subject of death in conversation might be extremely insensitive if one of the people one is conversing with has “lost a close relative, friend etc.” and are trying to come to terms with the mystery of that loss. This suggested the participants find it challenging to sensitively navigate conversations around death with particular groups of individuals. 5.6.3 Influence of Perceived Societal Beliefs This subcategory captured how perceived societal beliefs around talking about death and dying influenced participants' engagement in such conversations. There was a sense that participants felt different from others, in that they were open, but others were not. For most participants, believing that death is 'taboo' did not contribute to their openness around the subject; however, for some, this hindered and sometimes prevented participants from facilitating death-related conversations with others. This suggests that perceived societal beliefs around talking about death could place boundaries on opportunities to engage in death-related discussions. All participants in the initial sample mentioned death as 'taboo.' Similarly, ten participants recruited as part of theoretical sampling mentioned the belief that death is 'taboo' (P17, P18, P20, P21, P23, P25, P28, P29, P31, P35). For example, participant two stated: I think death is kind of a taboo subject in a way. People don't want to think about it a great deal. There are always easier things to talk about and some people don't like talking about anything (laughs). Participant four: It's taboo. It’s still taboo in our society… well, we don't really talk about death and dying. Participant eight: Err, I just, it [death], it’s just, you know it's like you know, it’s the taboo in life, you know, nudity, menstruation, shitting - they’re the most natural things in life, and they’re the biggest taboos. It’s really weird. Most participants suggested that seeing death as ‘taboo’ was specifically a western problem (P01, P08, P11, P13, P17, P18, P21, P28). Participants stated that other cultures do not see death as 217 ‘taboo’ and, as such, we should look to other cultures for inspiration on how we can lessen the ‘taboo’ surrounding death in the UK. For example, participant one stated: Other countries don't have that taboo, do they? Not everyone. I think the west do, don't we? America and us, don't we? I think I don't know I'm not an expert on other countries but let's say India. I think they do, don't they? And some of them or Eastern cultures, don't they? I think we should do the same. Participant twenty-eight: ... failure to recognise death is a significantly western challenge...compare with say India or Africa... and so on... Participant eight: I think it’s very peculiar to the British society, and to the American middle, middle, middle America... It’s, it's a very interesting sort of…it's a cultural thing, I think, in this country. I said, all the most natural things in the world are the most bloody taboo. It just does my head in. Participant thirteen: Yeah, I think people in England, generally, I know it’s a generalisation, culturally aren't particularly keen on talking about things like that. Erm, it seems a bad thing. It's like if you talk about it, it will happen or something like, you know, erm, you only talk about it if you absolutely have to. Although all participants stated that death-related discussions are avoided within the UK, some participants argued that this is lessening (P18, P23, P28, P35). This could indicate that if death were 'taboo,' there is currently a cultural shift in people's openness towards death and dying. For example: Participant eighteen: In the last 10 years I think the world is changing and it is getting easier to speak of - and a more open conversation is going on. Participant twenty-three: I think you young people are happier to talk about it now, you know, all the things used to be taboos for us aren’t the same for you guys. The data indicated that perceived societal beliefs around talking about death and dying influenced participants' willingness to engage in such conversations. Although the belief that death is 'taboo' 218 was not significant in prompting more openness towards death and dying, for some participants, this realisation hindered and sometimes prevented death-related conversations. For example, some participants suggested that although they are open to death-related conversations, they are reluctant to engage in them because they believe that others are not open to such discussions (P01, P08, P12, P13, P16, P18, P20). Participants provided multiple reasons why they assumed death was taboo for others. A few examples include reminding others of their own mortality, being removed from death, tempting fate, the fear of the process of dying, abandonment of death rituals, fearing the unknown and death being an uncomfortable subject. Participants expressed that there is a reluctance to talk about death at a societal level, where death is perceived as not a normal topic of conversation. For some, the belief that others are unwilling to engage in death-related conversations has hindered death-related conversations; for others, this assumption has prevented death-related conversations altogether. Participants stated that because others find death 'taboo', they are anxious to engage in such conversations. Participants felt concerned about embarrassing others, eliciting fear, or making others feel uncomfortable. For example, participant twelve stated that she was open to death-related conversations; however, she did not broach the subject with others. She assumed that others felt uncomfortable talking about death and dying and, therefore, she waited for them to initiate these types of conversations: If somebody brought it up in conversation, I’d be quite happy to talk to them about it. It’s not that I’m… don’t want to. I always leave it to the other person so that they feel comfortable rather than me talking about it. Participant four provided a similar example. Although she was open to talking about death and regularly engaged in death-related conversations both professionally (death doula) and personally, she assumed that others would find it difficult to engage in death-related conversations: I don’t find it [talking about death] difficult, but I find other… I think other people find it difficult because they’re frightened. Participants eight and ten also shared this view: I’ll talk about it, but I mean, I’m one of the few people that I know that seems fairly relaxed to talk about it. (P08) So, yeah, I’ll talk about anything with anyone but, yeah. Usually, it's them that will shut the convers… someone else that will shut the conversation down rather than me. (P10) 219 Assuming that others find death-related conversations difficult was also a belief held by participant eighteen, who suggested that although she is open to death-related conversations, she believes that others find such conversations embarrassing and uncomfortable: I don’t think I talk about death more than other people and I am apprehensive about the lead up to it and how that will manifest, but I think in general if the topic comes up, I am comfortable talking about it and I sense that other people are uncomfortable and almost embarrassed sometimes by the topic, which I don’t feel I am particularly. Similarly, for participant twenty, although he was open to death-related conversations, he did not engage in them because he assumes that others consider death to be taboo: As I said, I am prepared to discuss death with anybody, but there prevails in society still a general taboo and reluctance to talk about the subject, so even were I to have people to talk to, I would probably be ostracised were I to start talking about death and dying. It is still a subject that is avoided in normal conversation. The above quotes indicate that participants assumed that they are different from others; death is not ‘taboo’ for them. This could suggest that death-related discussions are not ‘taboo’; however, the death taboo assumption feeds the notion that death is taboo, preventing opportunities to engage in such discussions. Alternatively, this could suggest that those who do not perceive death as taboo are supporting the societal taboo by assuming it exists. For some participants, the assumption that others believe death is ‘taboo’ completely prevented death-related discussions with family and friends (P01, P16). These participants indicated that because they assumed that others viewed death as a taboo, they did not want to upset them by engaging in such conversations. For example, participant one stated that although he was open to death-related conversations, he only engages in such discussions with colleagues who research in the area of death and dying. He assumed that others find death a taboo topic and therefore did not engage in death-related discussions with family and friends because he feared that such conversations might trigger difficult emotions. Interviewer: … do you ever talk about death? Participant one: Occasionally, but only with certain people. Interviewer: Who are those people? 220 Participant one: Colleagues that research in that area. I don't talk about it with other friends you know it might upset them. Interviewer: Why do you think it might upset them? Participant one: Well, it’s a subject we don't like talking about, isn't it? … Having said that I don't mind talking about it, but I don't want to upset others by talking about it if they don't particularly want to. So, you know it's just a subject you tend to avoid… Similarly, participant sixteen suggested that although she was open to death-related discussions, she did not talk about death outside work (occupational therapist). She also assumed that others consider death a taboo and believed that people only facilitate such conversations, when necessary, (e.g., when facing death). She did not engage in death-related conversations, like participant one, because she believed others found it not a “normal topic of conversation.” This suggests that because death-related conversations are not commonplace, some people may avoid them until it is too late. 5.6.4 Others Unwilling to Engage in Death-related Conversations This subcategory relates to the previous subcategory, 'Influence of perceived societal beliefs of others.' The belief that others, such as family and friends, are unwilling to engage in such conversations is reinforced by participants' experiences of others avoiding such conversations. Participants provided examples of times when they have tried to engage in these types of discussions, but others have been reluctant to do so (P04, P05, P07, P08, P09, P10, P11, P12, P15, P17, P31, P35). This suggests that a lack of inclination to engage in such discussions may prevent people from opening up when they need to. Participants stated that family and friends found the topic insensitive, morbid and difficult to discuss. Additionally, for some participants engagement in such discussions caused family conflict (P05, P09, P15). For instance, participant five started to engage in death-related conversations after her mother's cancer diagnosis. However, she found it difficult to have these conversations with her mother because of her siblings. She explained that because they all have different opinions on what is appropriate to talk about, this has caused conflict: So, I'll be the one who talks about it, raises it, right? And then I have another sister who's thinking… who will argue with me and say, “why are you talking about it? That's not what you should be talking to mum about. She can fight this. You don't….” So, it's tense. 221 Although this participant was open to such discussions, her siblings' reactions prevented her from facilitating these discussions with those close to her. She felt as though she could not openly engage in death-related conversations with her mother because she was monitored by her siblings: … so, if I talked to my mum about death, we’ll just take her as an example, right? Because I don't have any other example. I'm policed by my brothers and sisters, right? So, my mum could say, well, I spoke to (participant) about this, this, and this. One of them [her siblings] might think why is she… why is she talking to her about that? And the same is true if… so, say one of my sisters talked to my mum about something, I might think, why is she talking about that? She believed that it is important for them to agree collectively before engaging in death-related conversations with their mother. Similarly, for participant nine, engaging in death-related discussions with her mother-in-law caused family conflict. Participant nine had previously talked with her mother-in-law about implementing a DNACPR (Do not attempt cardiopulmonary resuscitation). However, it was not until she had a heart attack, and no one knew her CPR status that it was put in place. Her mother-in-law was on a high-dependency unit, and the participant went to talk to her about implementing an advanced decision. This caused conflict with her brother-in-law as he thought that she had initiated that conversation with his mother: …my brother-in-law came on the ward, and he was not happy. He was really angry that he thought I’d initiated it, but I hadn’t initiated the conversation, but he’s, he’s come around to it now. It's taken a good few years, erm, but for a good couple of years I think he thought that I was just writing her off. The above examples suggest that when engaging in death-related conversations it is important to acknowledge how other close family members might react to such conversations. Some participants provided examples of trying to engage in death-related conversations with their parents; however, one parent was more open to this type of discussion than the other (P07, P11, P31, P35). Two participants stated that negative death-related experiences of their parents had affected their parent’s openness towards thinking and talking about it (P07, P35). However, this study found no unanimity on whether a negative or positive experience of death promoted or reduced openness towards death-related conversations. For example, participant thirty-five stated: …my mum in particular would not be keen to… she would just sort of change the subject. oh, we don't want to talk about that. That’s, you know, that's just a bit morbid, erm, you know 222 whether that was… again I can't recall but maybe that was around, you know, she struggled with the death of her dad and maybe that sort of might have brought up feelings for her that she hadn't properly kind of worked through. Similarly, participant seven had conversations with her mother on the topic of wills and end-of-life care; however, her dad refused to engage with the topic. Although her mother was more open to death-related conversations, her father’s refusal made it difficult for her mother to engage in such conversations: … my dad refuses to engage in it at all. He absolutely can't deal with the idea of it. Erm, he just doesn’t want to know, erm, and just totally shuts it down. Similar to participant twenty-seven, participant seven believed that her father’s previous death-related experiences have affected his openness towards the subject: I think he sees death so very clearly because both of his parents. He really sees it associated with suffering, erm, in the years prior to dying and, I, I, think that it really frightens him the idea of, erm, being in a situation like either of them were… erm, and I, I, I think he can’t, he can’t comprehend that, that, the idea that that could happen. As stated in section 5.3, for six participants, their death-related experiences prompted them to recognise the reluctance of others to engage in death-related conversations (P17, P18, P20, P25, P29, P31). For participants seventeen, eighteen and twenty this realisation did not promote or deter openness, however, for participants twenty-five and twenty-nine, the reluctance of others to engage in death-related conversations after a death-related experience promoted more openness around death and dying in later life. For example, participant twenty-five stated that after the death of her father: I always suspected that culturally in this country we struggle to discuss death, it is brushed under the rug. Once I realised this first-hand, I became much more vocal about death. Similarly, for participant twenty- nine, the death of her grandfather, followed by a lack of death-related discussion, led her to recognise the reluctance of others to engage in death-related conversations: I think it made me aware that talking about death was kind of not really the done thing. I think that's the main thing. Erm, I think it… just the experience of… because I wasn't secretive about the whole thing, you know, I'd sort of say that it happened to people, erm, but I didn't really, you know… but then nothing… I think it made me aware that people don't really have 223 follow up questions (laughs) you know, about when somebody's died, they just sort of say I'm sorry and then that's kind of the end of it. So, I think it’s… so I think it's made me aware of that, and I think it's also maybe helped me to try and remember to ask other people. This realisation has affected her openness towards talking about death and dying. As a result, she became more considerate and open to engaging in death-related conversations with others. For participants twenty-nine, her death-related experiences occurred during adolescence. This suggests that a reluctance to engage in death-related conversations with adolescents after a death-related experience could affect openness towards death in later life. 5.6.5 Promoting More Openness This subcategory captured how participants believed more openness around death and dying could be achieved. During the analysis, it was apparent that engaging in the subject of death had helped some participants become more open to thinking and talking about death and dying. Participants started to engage with death in numerous ways; however, the most common was through learning about death-related issues. During the initial sample, I would ask: "How do you think we can become more open to thinking and talking about death and dying?" There was an overwhelming consensus, with nine out of the sixteen participants suggesting that death education in schools would promote more openness around the subject (P03, P06, P07, P08, P09, P10, P12, P13, P15). Below are some examples of participants' responses to this question. Participant ten: … but I actually think that if you’ve got someone who specifically teaches PSHE (Personal, social, health and economic education) and teaches it all the way through, say infants. So, for reception and year 1 and 2 and then you’ve got someone else who’s a constant PHSE person through juniors, then someone through seniors, you develop a relationship with young people whereby the young people will feel okay about coming to talk to you. Whether it's about death or it’s about, oh, my god, my boyfriend’s trying to force me to have sex. Without any, yeah, just, we ca… we need to be open about everything, and I think, the way to become open about everything is to have a really comprehensive PSHE programme that talks about feelings and how, how we feel, and how we should expect to feel within a relationship … That’s where I think we need to go, and when we can talk about fee... we can talk about our feelings openly, then those difficult feelings that come with death aren’t so difficult because we can talk about other difficult things as well, as well as the good ones. Which we don’t talk about those either. Participant twelve: …I think we should talk about it, even primary schools, erm, talking about… because children lose, young children lose grandparents, they lose mums and dads, 224 they lose sisters… I think we should start at a very young age in things like books, erm, talking in classes about it. It’s part of science, it’s all part of PSHE, personal social health education studies with children. It should start at a young age so that if they have any kind of queries or any questions, there’s people in place who can talk to them and answer their questions. Participant nine: I would love to see it brought into schools about… we talk about birth and sex education, and we should talk about death and normalise it, so people aren’t shocked. Participant six: Schools, education, both ends are ignored, life and death, and it’s very saddening. Participant eight: I, I, I don’t know. I mean you’d probably start; you’ll probably have to start at the home and at school somewhere. Err, you know, they're doing sex education and things like that, perhaps they should, you know, teach people about defecation and menstruation and, erm, death as well, just to get them talking about it and use to it at school so it becomes every day, normal. Participant seven: …I think kind of looking at death historically is really important. Erm, and I think archaeology is really, it has a really good, erm, is a really good way of engaging with death without… it kind of depersonalises it a bit because it’s not somebody right now. It’s not somebody who’s died recently, erm, and, so, you feel slightly more removed from them. It doesn’t have that same sort of personal connection, erm, but it could be a really amazing way then to think about, erm, death and prac… death and burial practises from the past, erm, can then enable you to have conversations about situations in the present in a different way, and also, just for learning. I just remember the first time I did a class where we looked at human remains and kind of learning about diseases and things, and it was you know absolutely fascinating to try and understand, erm, you know, kind of what life was like for people, erm, you know, in the past and, erm, I think, you know, there’s loads of, that we can learn from death, erm, just about the way we live our lives and the way we think about the world and understand it. Participants described how a reluctance to engage in death-related conversations could be prevented by normalising death-related conversations in childhood, suggesting that it is through this early intervention that openness around death could be achieved. Participants suggested that this could be accomplished by embedding death-related topics into the school curriculum in subjects such as history, science, PSHE and religious studies. Additionally, some participants provided 225 examples of recourses that they believed to be useful in broaching the topic of death with children, such as the Disney movie ‘Coco’. No participants recruited through theoretical sampling stated that death education in schools would promote more openness around the subject. However, as stated in section 5.4, some participants suggested the benefits of death-related conversations with children (P21, P25, P29, P31, P35). Additionally, some participants recruited via theoretical sampling indicated the importance of death-related topics in schools, children’s literature and film. Participants recruited as part of the initial and theoretical samples indicated other ways to promote more openness around death and dying. Most participants stated that to promote more openness around death, there needed to be a cultural shift in how death is perceived. Relating to the category, ‘Exploring their relationship with death,’ participants stated that this could be achieved by engaging with death-related topics. For these participants, engaging with the subject of death had led to more openness; therefore, they believe that promoting this could lead to more openness for others. A few examples include: • Social media • Online death courses • Death positive campaigns/charities (Death café, Death positive libraries, Dying Matters, Living Well Dying Well, End of Life Doula UK, death positive festivals) • TV programmes/documentaries • University level death education • Films • Literature • Community engagement (compassionate communities) In addition to the examples cited above, some participants assumed that wider global circumstances such as COVID-19 (P07, P08, P09, P12, P13, P14, P15, P16) and climate change (P02, P03) would encourage others to become more open to thinking and talking about death and dying. For example, participant three stated: ...it's [talking about death] coming up as well interestingly with what's happening with the climate and people waking up to the seriousness of the situation and and I think it's… I think that facing up to the reality of what's happening with the environment is… it includes how we feel about our own deaths. So, if people don’t want to talk about their own death and they can't, then that makes it hard for them to face up to the reality of what's happening 226 with the climate because that might include death of ourselves or our loved ones, our children and so on. However, no participants recruited via theoretical sampling mentioned the impact of wider global circumstances on how individuals thought and talked about death and dying. 5.7 The Grounded Theory The findings indicate that death-related experiences, recognising the benefits of openness and exploring their relationship with death led participants to become more open to thinking and talking about death and dying. Although these categories led to more openness, it became apparent that openness between participants was conditional, varied and influenced by other factors. In this section, I will outline the theoretical model developed from this grounded theory study, demonstrating how this process led individuals to begin actively thinking and openly talking about death and dying. The grounded theory consists of four main categories' Death-related experiences,' 'Recognising the benefits of thinking and talking about death and dying', Exploring their relationship with death,' and 'Conditions and influences on openness'. The first category, 'Death-related experiences,' identified seven death-related experiences that led to more openness around death and dying. These include 'Spiritual experiences,' 'Near-death experiences', 'Experiences within work', 'Being faced with their own potential death', 'Being faced with the potential death of others', 'Experiencing the death of a loved one', and 'Experiencing the complicated bereavements of others'. This category captured how death-related experiences impacted participants' openness towards death. For some participants, their death-related experiences acted as a turning point when their openness started to change; however, for others, it was a combination of multiple experiences that contributed to more openness. The death-related experiences described in section 5.3 held more significance than participants' previous or subsequent death-related experiences. However, there was no unanimity about the type of death-related experience participants had. For some participants, a positive death-related experience contributed to more openness, such as: • Experiencing a peaceful death • Experiencing a ‘good death’ • Being present at the death • Being more involved with the death (having an active role in the death (pre and post) • Sensing or contacting loved ones after death For others, a negative death-related experience contributed to more openness such as: 227 • Experiencing a sudden or unexpected death • Being faced with their own potential death Additionally, some participants suggested that the impact of their death-related experience on openness depended on the closeness of the relationship with the deceased. This study found that both negative and positive death-related experiences resulted in more openness. However, there was a difference between participants who had experienced a 'typical' death-related experience and those who had a spiritual or near-death experience. For those that had a spiritual or near-death experience, this experience directly led to more openness around death. Spiritual or near-death experiences either prompted or reinforced participants' belief in the afterlife. For some, encountering this type of transcendent experience prompted them to explore their after-death beliefs to make sense of their experiences. Near-death or spiritual experiences were very meaningful and significant to participants. Although these experiences only lasted a few minutes, they resulted in substantial and enduring transformations on participants' beliefs and values. Participants frequently mentioned that they no longer feared death as death is only the end of the physical body. All participants stated that because of this, their spiritual experiences brought them comfort and reassurance when thinking and talking about death and dying, thus promoting more openness around death. However, for participants that had a 'typical' death-related experience, this was often the start of their journey to becoming more open. Most participants were prompted by their death-related experiences to recognise the benefits of openness. Recognising the benefits of openness encouraged participants to explore their relationship with death, thus promoting more openness around the subject. However, despite the type of death-related experience participants had, most participants were forced to confront death in some way. Participants frequently mentioned how their attitude towards death started to change. Death seemed more real, more of a possibility, and therefore, something to actively consider and talk about. Although how participants experienced death varied, as demonstrated in section 5.3, for most participants, their death-related experiences led them to recognise the benefits of openness and/or to start exploring their relationship with death, which leads to the second major category, 'Recognising the benefits of openness'. The second major category was ‘Recognising the benefits of openness’. This category consisted of four subcategories: ‘Preparing practically for death’ (‘End-of-life care and wishes’, ‘Enabling individuals to have a ‘good death’’), ‘Tackling fears around death and dying’, ‘Recognising the benefits of death-related conversations with children’ and ‘Coping with bereavement’. This category captured how recognising the benefits of openness prompted participants to start actively thinking and openly talking about death and dying. 228 Recognising the benefits of openness was an important part of how these participants became open to thinking and talking about death and dying. During interviews, all participants stated the benefits of actively thinking and openly talking about death and dying; however, for some, their death-related experiences directly led to this realisation, which contributed to more openness around the subject. The most frequent death-related experiences that prompted participants to recognise the benefits of thinking and talking about death and dying were: ‘Being faced with their own potential death,’ ‘Experiences within work’, ‘Being faced with the potential death of others’, ‘Experiencing the death of a loved one’, and ‘Experiencing the complicated bereavements of others’. Reflecting on positive and negative death-related experiences prompted participants to recognise the benefits of openness in enabling individuals to have a positive death or preventing individuals from experiencing a negative death. Positive death-related experiences often led to recognising the benefits of openness in enabling individuals to have a ‘good’ death. Negative experiences of death, such as a sudden or unexpected death, prompted participants to recognise the benefits of openness in preventing distress for surviving family members. Participant’s death-related experiences encouraged them to see the potential benefits of openness for themselves, for others, for those dying and for those left behind. Participants were prompted by their death-related experiences to recognise the potential benefits of openness in helping with the following: • Enabling individuals to have a good death • Normalising death-related conversations with children • Preventing distress for surviving family members • Preventing regret for surviving family members around end-of-life wishes and care • Reassuring loved ones of end-of-life care and wishes • Ensuring individuals receive the end-of-life care that they wish for • Reducing death-related fears and anxieties • Helping individuals feel more prepared for the death of a loved one • Helping individuals to accept the death of a loved one Experiencing first-hand how openness can be beneficial prompted participants to become or want to become more open to the subject. For example, participants were prompted to start actively thinking about death because of their death-related experiences. Reflecting on these experiences led them to see the benefits of openness, thus promoting more openness. Recognising the benefits of openness not only prompted participants to become more open to the subject but also played a part in their continued openness. Although for most participants, a specific 229 death-related experience led to recognising the benefits of openness, after this realisation, participants began to reflect on other death-related experiences that did not lead to their initial openness but also demonstrated the benefits of openness. Reflecting on previous and subsequent death-related experiences reinforced participants' belief in the benefits of openness, which contributed towards their continued openness towards the subject. This is illustrated in Figure 30. For some participants recognising the benefits of openness directly encouraged them to become more open to the subject; however, for most participants, recognising the benefits of openness led them to start exploring the subject of death, which leads to the third major category, ‘Exploring their relationship with death’. The third major category identified was ‘Exploring their relationship with death’. This category included three subcategories: ‘Exploring and addressing fears around death and dying’, ‘Exploring after-death beliefs’ and ‘Enabling individuals to live life more meaningfully’. This category captured how exploring fears and beliefs around death and dying via actively engaging with the subject of death helped to reduce fears and promote openness. Participants chose to actively explore their relationship with death and dying through such activities as reading, watching documentaries, attending events and talking with friends and family. Death-related experiences(initial openness) Recognising the benefits of openness OpennessContinued openness Reflecting on subsequent death-related experiences Reflecting on previous death-related experiences Figure 30 – Diagram Demonstrating How Recognising the Benefits of Openness Contributes to Participant’s Continued Openness Towards Death and Dying 230 Participants started to explore their relationship with death in the following ways: • Reflecting on previous death-related experiences • Exploring and addressing fears • Exploring after death beliefs • Engaging with the subject of death Most participants were prompted to start exploring their relationship with death after a significant death-related experience led them to recognise the benefits of openness. Participants began to explore and address their death-related fears by actively engaging with the subject of death. Participants started to engage with death in various ways such as reading, watching documentaries, attending events, exploring how other cultures deal with death and becoming part of the online 'death space'. For these participants, engaging with death promoted more death awareness, helped to ease death-related fears and contributed towards more openness around the subject. Moreover, engaging with death created more opportunities for participants to explore this theme further, which played a role in their continued openness towards the subject. Additionally, for some participants, actively engaging with the subject of death enabled them to reconceptualise their fears around death and dying. Engaging with the subject of death encouraged participants to reconceptualise death by reducing fears and changing worldviews. Participants stated that actively engaging with the subject of death led to the realisation that some death-related fears were irrational or could be controlled. Additionally, reconceptualising fears around death prompted participants to see the positives of more openness towards death, resulting in a greater appreciation for life. Engaging with the subject of death encouraged participants to integrate death into part of their lives. Exploring their relationship with death contributed to participants' openness by enabling them to reconceptualise death, become more death-literate and raise their death awareness. For these participants, raising their death awareness helped them familiarise themselves with death, inform them about all things death-related, and feel better equipped to manage death. In addition, for some participants exploring their relationship with death involved exploring their after-death beliefs. The data indicated that after-death beliefs significantly impacted people's openness towards thinking and talking about death. Most of these beliefs were around the existence of the afterlife; however, for some participants, their belief in nothing after death brought them comfort when thinking and talking about death and dying. Participant's after-death beliefs influenced openness in the following ways: 231 • By providing comforting when thinking and talking about death and dying • By promoting acceptance of death (death is a natural part of life) • By helping to reframe death (puts death into a context/framework) • By reducing fears around death (seeing loved ones in the afterlife/death is only the end of the physical/the nothingness of death) Participants started to explore their after-death beliefs by actively engaging with the subject. Similar to exploring and addressing fears around death and dying, exploring and engaging with such topics contributed to their openness. Participants explored their after-death beliefs in a variety of ways, such as attending the spiritualist church, reading, exploring different religions, watching documentaries and learning about the spiritual and near-death experiences of others. Relating to the subcategory, 'Engaging with death (Promoting more death awareness),' engaging with material relating to after-death beliefs encouraged participants to explore and address death-related fears around what happens after death (e.g., fear of the unknown or the existence of an afterlife). For some, exploring after-death beliefs encouraged or reinforced their belief in the afterlife, which reduced fears and promoted more openness. For others, exploring after-death beliefs encouraged them to explore the broader topic of death further. Additionally, participants' frequent engagement with material relating to after-death beliefs contributed to their continued openness towards the subject as it continuously reinforced their belief in an afterlife, thus, reducing fears and continuing openness. Most participants were prompted by their death-related experiences to explore their after-death beliefs. The most common experience that prompted participants to explore their after-death beliefs was a spiritual or near-death experience. However, other death-related experiences such as 'Being faced with their own potential death', 'Experiences within work' and 'Experiencing the death of a loved one' also initiated participants exploration of their after-death beliefs. Participants were encouraged by their death-related experiences to explore their after-death beliefs to achieve the following: • Help make sense of their experiences • Give meaning to their experiences • Reduce death-related fears (such as fear of the unknown) • Find comfort For these participants, exploring their after-death beliefs helped them to make sense of their experiences, reinforced their belief in the afterlife and removed their fear of death. As a result, this contributed to more openness around thinking and talking about death and dying. 232 Furthermore, some participants stated that recognising the benefits of openness and exploring their relationship with death (via engaging in death-related topics and activities) encouraged them to live life more meaningfully. The subcategory ‘Enabling individuals to live life more meaningfully’ was not part of the process behind how these participants began to actively think and openly talk about death and dying; instead, this subcategory demonstrated how exploring their relationship with death prompted participants to live life more meaningfully which facilitated in their continued openness towards the subject. Participants frequently mentioned that exploring their relationship with death led them to live life more meaningfully because of the following: • Having a greater awareness of death • Becoming more familiar with death • Viewing death as natural (a natural part of the life cycle) • Developing an acceptance of death Participants stated that recognising the benefits of openness and exploring their relationship with death encouraged them to accept death as a natural part of their life cycle. For these participants accepting death as a natural part of our life cycle enabled them to live life more meaningfully. Although this realisation did not contribute to participants' initial openness, reflecting on this encourages participants to remain open and prompted them to continue engaging with the subject. Exploring their relationship with death via engaging with the subject enabled participants to accept death as a natural part of our life cycle, provided them with information and resources to explore further (encouraging their continuous engagement with the topic) and encouraged them to continually reflect on morality by integrating death into part of their lives. A combination of the abovementioned categories contributed to more openness; however, the analysis indicated that although these categories contributed to more openness, openness between participants was conditional, varied and influenced by other factors. This leads to the fourth and final category, 'Conditions and contexts for openness'. The fourth major category was 'Conditions and context for openness.' This category was not part of the process behind how these participants began to actively think and openly talk about death and dying but instead explores the conditions and context that influence the core category of openness. Five subcategories were identified, 'Different aspects of death', 'Conditional openness', 'Influence of perceived societal beliefs', 'Others unwilling to engage in death-related conversations' and 'Promoting more openness'. 233 During the analysis, it became apparent that openness was not a straightforward concept; instead, it was conditional and affected by societal factors (or the assumption of how participants believe others view death within society). Although all participants were open to thinking and talking about death and dying, openness varied between participants. Openness changed depending on the aspect of death they were talking about (practical, emotional, spiritual, philosophical, factual (biological), religious aspects of death), whom they were talking to, and the situation in which the conversation arose. Most participants found religious, spiritual, and philosophical aspects of death the easiest to discuss and consider and were least open to thinking and talking about the emotional side of death. However, these conversations were more meaningful and difficult to discuss for participants that had encountered a spiritual/near-death experience or held strong spiritual beliefs. These participants frequently mentioned that their reluctance to engage in such discussions stemmed from their fear of being ridiculed or labelled as crazy, weird, or different. Moreover, participants stated that their openness changed depending on whom they talked to. Participants expressed concerns about navigating such conversations with specific groups of individuals. For some, initiating death-related conversations with close family felt challenging; for others, initiating and partaking in death-related discussions with those that are elderly or ill felt most challenging. Participants felt reluctant to engage in death-related discussions with these groups of individuals because of the following reasons: • Concerns around upsetting others • Concerns around burdening others • Concerns around triggering others Furthermore, the data indicated that perceived societal beliefs around talking about death and dying had influenced participants' willingness to engage in such conversations. Although participants were open to death-related discussions, some participants did not engage in them because they assumed that others were not open to this type of discussion. It became apparent that perceived societal norms around talking about death influenced participants' openness towards engaging in death-related conversations with others. The findings indicate that for some participants, the perceived societal beliefs of others around talking about death have hindered and sometimes prevented death-related conversations with others. For example, some participants suggested that although they are open to death-related conversations, they are reluctant to engage in them because they believe others are not open to such discussions. Participants stated that because others find death 'taboo', they are anxious about engaging in such conversations for fear of embarrassing others, eliciting fear, or making others feel uncomfortable. Participants suggested that death is viewed as 234 'taboo', and this belief is embedded in our culture at a societal level where death is not perceived to be a normal topic of conversation, therefore, perceived societal beliefs around talking about death have placed boundaries on opportunities to engage in such discussions. Although participants assume that death is taboo for others, the belief that others are unwilling to engage in such conversations is reinforced by participants' experiences of others avoiding such conversations. Participants frequently provided examples of times when they have tried to engage in these discussions, but others have been reluctant to do so. Participants stated that they had tried to facilitate death-related discussions with others; however, close family and friends have avoided this type of discussion as they find the topic insensitive, morbid and difficult to discuss. Participants also stated that they are reluctant to engage in death-related conversations with others because such conversations have previously caused family conflict. In this category, I present a fifth subcategory, 'Promoting more openness.' 'Promoting more openness' was not part of the process behind how these participants began to actively think and openly talk about death and dying; instead, it explored how participants suggested that more openness around death and dying could be achieved. During the initial analysis, nine out of sixteen participants stated that death education in schools would promote more openness around the subject. Participants described how a reluctance to engage in death-related conversations could be prevented by normalising death-related conversations in childhood, suggesting that it is through this early intervention that openness around death could be achieved. No participants recruited through theoretical sampling stated that death education in schools would promote more openness around the subject. Instead, most participants stated that more openness could be achieved by encouraging others to engage with the subject of death in various ways, such as social media, death-positive campaigns and charities, TV programmes and documentaries, literature and community engagement. For these participants, engaging with the subject of death has led to more openness; therefore, they believe that promoting this could lead to more openness for others. Figure 31 demonstrates the relationship between the main theoretical categories and shows how the categories fit together to form the developed grounded theory. 235 Figure 31 – The Theoretical Model Openness Death-related experiences Recognising the benefits of openness Exploring their relationship with death Conditions and context for openness Encouraging continued openness236 Chapter Six: Discussion 6.1 Introduction The focus of this chapter is to situate the developed grounded theory within the existing literature. In doing so, I will demonstrate how my grounded theory makes its own original and significant contribution to the existing knowledge in this field. This thesis aimed to explore the process behind how individuals become open to death communication, an aim which has been achieved and demonstrated. The grounded theory consisted of four main categories' Death-related experiences,' 'Recognising the benefits of thinking and talking about death and dying', Exploring their relationship with death,' and 'Conditions and context for openness'. The findings revealed that death-related experiences, recognising the benefits of openness and exploring their relationship with death led participants to become more open to thinking and talking about death and dying. Although these categories led to more openness, it became apparent that openness between participants was conditional, varied and influenced by other factors. I will now explore the developed grounded theory in relation to the existing research in this area. 6.2 The Impact of Death-related Experiences on Openness In section 5.3, I presented the first major category of this grounded theory, ‘Death-related experiences’. Seven death-related experiences were identified in the data, ‘Spiritual experiences,’ ‘Near-death experiences,’ ‘Experiences within work’, ‘Being faced with their own potential death’, ‘Being faced with the potential death of others’, ‘Experiencing the death of a loved one’ and ‘Experiencing the complicated bereavements of others’. The study found that death-related experiences were important in prompting individuals to become open to death and dying. For most participants, their death-related experiences led them to recognise the benefits of openness and/or encouraged participants to start exploring their relationship with death; this then prompted them to start actively thinking and openly talking about death and dying. There was no conformity in the type of death-related experience that contributed to more openness. Additionally, there was no unanimity on whether a positive or negative death-related experience contributed towards more openness around the subject. Research into death-related experiences has mainly focused on the negative consequences of such experiences; however, the majority of participants in the current study described many positive outcomes following their death-related experiences. 237 6.2.1 Post-traumatic Growth Research has shown that death-related experiences can significantly impact those left behind. Experiencing the death of a loved one has been linked to a wide range of negative consequences, such as increased mortality rates (Stroebe et al., 2007), increased risk of developing mental health problems (e.g., depression, anxiety, reduced self-esteem and PTSD) (Chen et al., 1999; Christiansen et al., 2013; Byrne & Raphael, 1997; Detering et al., 2010; Kaltman & Bonanno, 2003; Stroebe et al., 2007; Wamser-Nanney et al., 2018) and physical health complaints (e.g., headaches, high blood pressure and new or worsened illnesses) (Stroebe et al., 2007; Thompson, 1984). Previous research has focused primarily on the negative consequences of death-related experiences; however, participants in the current study described many positive outcomes following their death-related experiences, such as a greater appreciation for life and more openness towards death and dying. This finding is supported by an increasing number of studies arguing that traumatic events such as experiencing bereavement or being diagnosed with a terminal illness can lead to post-traumatic growth (Calhoun et al., 2010; Danhauer et al., 2013; Michael & Cooper, 2013; Ryan & Ripley, 2021; Schaefer & Moos, 2001; Tedeschi & Calhoun, 2004; Tomich & Helgeson, 2004). There is no concrete agreed-upon definition of post-traumatic growth; however, the term post-traumatic growth was coined and defined by Tedeschi and Calhoun (2004) to describe the positive psychological changes following challenging life events. Previous research indicates that it is not the event that directly triggers post-traumatic growth, but the struggle associated with the aftermath (Michael & Cooper, 2013). Research has identified several factors contributing to post-traumatic growth, such as resilience (Albuquerque et al., 2017), the severity of the event (Brooks et al., 2017), social support (Yilmaz & Zara, 2016), religious and spiritual beliefs (Yilmaz & Zara, 2016), gender (Patrick & Henrie, 2016) and age (Polatinsky & Esprey, 2000). However, there is conflicting evidence regarding the contributing factors leading to post-traumatic growth and the impact that such factors have on the progress of growth (Ryan & Ripley, 2021). Evidence suggests that post-traumatic growth can occur after the death of a loved one (Calhoun et al., 2010; Michael & Cooper, 2013; Parappully et al., 2002; Ryan & Ripley, 2021; Schaefer & Moos, 2001; Talbot, 1998). Research in this area indicates that experiencing the death of a loved one can result in a greater appreciation for life (e.g., living in the here and now, finding more pleasure and fulfilment in everyday life, living life more meaningfully) (Michael & Cooper, 2013; Tedeschi & Calhoun, 2004), a heightened existential awareness (Michael & Cooper, 2013) and the potential for personal growth (e.g., increased self-understanding and maturity, becoming more compassionate, self-confident, thoughtful, empathetic and tolerant) (Calhoun et al., 2010; Michael & Cooper, 2013; Schaefer & Moos, 2001; Talbot, 1998). Research has also indicated similar outcomes for those 238 diagnosed with a terminal illness such as cancer (Danhauer et al., 2013; Morris et al., 2012; Tomich & Helgeson, 2004). In contrast to other events, such experiences often lead individuals to challenge their worldviews (Davis et al., 2007). For example, experiencing a bereavement or terminal diagnosis often prompts individuals to reflect on their own mortality. Research has shown that a heightened existential awareness may lead individuals to reconstruct their core values and beliefs about the world resulting in the prioritisation of growth-oriented goals (Vail et al, 2012), thus encouraging individuals to live life more meaningfully. In relation to the research cited above, participants in the current study frequently mentioned how their death-related experiences prompted them to think about their own mortality, thus encouraging them to explore the subject of death and in doing so, they developed a greater existential awareness and appreciation for life. Most participants in the current study indicated that their death-related experiences prompted them to become more open to death and dying, this increased openness could be interpreted as an aspect of post-traumatic growth. Therefore, the findings of the current study suggest that such experiences could provide individuals with the opportunity for personal growth through actively thinking and openly talking about death and dying which could promote a heightened existential awareness and desire to live life more meaningfully. Moreover, the current study found that engaging with the subject of death helped individuals to become more open to death and dying after their death-related experiences therefore this could suggest that actively engaging with the topic of death could be a facilitator for post-traumatic growth. Receiving a terminal diagnosis or experiencing the death of a loved one can be a difficult and emotionally draining experience; however, such experiences could provide individuals with a unique opportunity to grow form their experiences, resulting in more openness around death and dying. Although it is beneficial to explore the positive psychological consequences of significant events, it is important to recognise the danger of asserting that all individuals will or even should experience growth, it could be more damaging than encouraging if survivors of traumatic events feel pressure to grow from their experiences as feeling of despair, inadequacy and distress are likely to increase (Maitlis, 2020). For example, Cordova (2008) comments that cancer patients are often told to “stay positive”, thus implying that having a positive mindset might protect individuals from cancer. Therefore, while some may find this narrative inspiring, it could possibly be harmful for those dealing with a life-threatening diagnosis by turning growth into a goal that all are expected to achieve. 239 6.2.2 Working in a Death-related Field For some participants, their experiences at work have contributed to more openness around the subject. Most participants who expressed that their experiences at work led to more openness came from clinical backgrounds (e.g., doctors, nurses, and death doulas). Research into attitudes towards death and dying within a healthcare setting suggests that working in a death-related field can negatively impact individuals (Aase et al., 2008; Jackson et al., 2005; Whitehead, 2014). For example, studies have shown that working in a death-related field can invoke negative emotional responses (Aase et al., 2008; Jackson et al., 2005; Whitehead, 2014), and increase vulnerability (Aase et al., 2008), burnout (Dorz et al., 2003; Medisauskaite & Kamau, 2019) and death anxiety (Payne et al., 1998; Peters et al., 2013). However, research into the level of death anxiety in healthcare professionals has yielded conflicting results. Some studies report higher levels of death anxiety than other occupations (Payne et al., 1998; Peters et al., 2013), whereas others have shown that healthcare workers have a more positive attitude towards death and dying (Grubb & Arthur, 2016; Rodenbach et al., 2016; Sinclair, 2011). Research indicates that early death-related experiences can be a motivator to encourage individuals to enter a death-related career (Sinclair, 2011). Therefore, familiarity with death prior to entering a death-related occupation could explain why individuals working in a death-related field have a more positive attitude towards death and dying. While previous research shows that working in a death-related field may have negative impacts, it also highlights that positive responses are seen (Rodenbach et al., 2016; Sinclair, 2011). The current study found that such experiences encouraged participants to become more open to death and dying. Supporting this is an ethnographic study conducted by Sinclair (2011). Sinclair (2011) used semi-structured interviews to explore the impact of being frequently exposed to death on the lives of palliative and hospice care workers. The study found that frequent exposure to death encouraged healthcare workers to reflect on their own mortality by vicariously 'rehearsing' their own death. Although participants initially found this exercise difficult, it was ultimately beneficial in helping them to provide adequate care for their terminally ill patients (Sinclair, 2011). In the study, actively thinking about their own mortality, prompted by their experiences at work, encouraged participants to recognise the impermanent nature of life, resulting in a greater acceptance of death as a natural part of our life cycle (Sinclair, 2011). In addition to a greater acceptance of death, Sinclair (2011) found that prospectively addressing mortality eased death-related fears and enhanced meaning in life. For example, being frequently exposed to death prompted participants to acknowledge and incorporate death into their personal lives as a way to normalise death (Sinclair, 2011). In doing so, they developed a greater appreciation for life (Sinclair, 2011). Sinclair’s study supports my grounded theory as participants described how reflecting on their mortality, prompted by their death-related 240 experiences, encouraged them to actively engage with the subject of death. Frequently engaging with the subject of death reduced fears and led to more openness around death resulting in a greater acceptance of death as a natural part of our life cycle. Supporting this is a study by Rodenbach et al. (2016). The study used semi-structured interviews to examine how the personal attitudes of oncology clinicians affect and are affected by their terminally ill patients. The results found that most clinicians had a conditional acceptance of death, with participants suggesting that this could change if they received a terminal diagnosis (Rodenbach et al., 2016). However, for many clinicians, working with terminally ill patients changed their perspective on life (e.g., by encouraging them to live life more meaningfully), thus positively affecting how they cared for and communicated with their terminally ill patients (Rodenbach et al., 2016). This suggests that attitudes and acceptance towards death can influence how healthcare workers communicate with and effectively care for their patients. Supporting this is a study by Peters et al. (2013). Peters et al. (2013) conducted a literature review of fifteen articles from 1990 to 2012 to assess whether fear of death can impact the quality-of-care nurses give to their dying patients. The study reported that nurses with a higher level of death anxiety had a more negative attitude towards the care of their dying patients, with younger nurses reporting a higher level of death anxiety (Peters et al., 2013). Openness towards death is particularly beneficial for those working within a healthcare setting. For example, a descriptive correlational study conducted by Deffner and Bell (2005) on 190 nurses found that those with a higher level of death anxiety found death-related conversations with patients and their family members uncomfortable compared to those who had received death communication training. Supporting this is a study by Black (2007) with 135 healthcare professionals that revealed that participants with a lower level of death anxiety were more likely to initiate discussions around advance directives with patients. Previous research indicates the benefits of death education programmes in reducing death anxiety in nursing students (Gurdogan et al., 2019; Melo & Oliver, 2011; Peters et al., 2013). For example, a descriptive cross-sectional study conducted by White and Coyne (2011) revealed that nurses attributed a lack of training as a barrier to providing effective end-of-life care, with 25% of respondents suggesting that they felt inadequately prepared to effectively care for their dying patients. Training communication is encouraged internationally as a necessity for individuals working in end-of-life care (Brighton et al., 2017). Within the UK, several communication training courses have been created to enhance the end-of-life communication skills of medical professionals (NHS, 2023; Sage & Thyme, 2018). The NHS website details several end-of-life communication programmes designed to teach end-of-life communication skills to healthcare professionals (NHS, 2023); however, communication training is mainly taught within broader palliative care training courses. 241 The most widely taught and evaluated communication skills training course is the 'SAGE & THYME Foundation Level Workshop' (Sage & Thyme, 2018). The course is an evidence-based practical programme to improve communication skills between clinicians and their patients. The workshop uses experiential, didactic and role-playing methods to teach healthcare professionals how to engage in structured patient conversations (Sage & Thyme, 2018). Research has shown that the 'SAGE & THYME Foundation Level Workshop' successfully improves the communication skills of healthcare professionals (Connolly et al., 2014). For example, Connolly et al. (2014) used pre- and post-workshop questionnaires to assess the programme's impact on the communication skills of healthcare professionals. The study found an increase in knowledge and self-efficacy post-workshop (Connolly et al., 2014), thus indicating its usefulness in improving communication skills between healthcare professionals and patients. Although research indicates the usefulness of the 'SAGE & THYME Foundation Level Workshop', the workshop is not currently mandatory. Presently, within the field of oncology, all UK health professionals must attend an accredited advanced communication skills course (Barnes et al., 2012). Turner et al. (2011) explored the attitudes of palliative care staff towards the 'Connected' three-day communication training programme. Like the 'SAGE & THYME Foundation Level Workshop', 'Connected' is delivered using a mixture of experiential, didactic and role-playing methods to demonstrate conversational role modelling. Turner et al. (2011) found that nurses were more open to the training programme than doctors. For example, nurses reported that communication training should be mandatory; however, doctors indicated that staff members should already have the communication skills required to engage in such conversations, even though nurses rated their communication level more highly than doctors (Turner, 2011). However, as the impact of the training course on death communication was not assessed, the workshop's usefulness in improving communication skills cannot be determined. Furthermore, a systematic review of end-of-life communication training for generalist palliative care providers found that communication training was mainly taught within broader end-of-life or palliative training courses (Brighton et al., 2017), thus demonstrating the need for specific death communication training to prepare healthcare professionals to facilitate end-of-life conversations with their patients. The current study's findings suggested that exploring their relationship with death contributed to more openness around death and dying for the participants. Participants suggested that exploring their relationship with death via reflecting on their thoughts, feelings, and previous death-related experiences relieved their death-related anxieties, helped them to reflect on their perceptions of death and enabled them to better facilitate death-related conversations with others. This suggests 242 that developing training programs aimed at encouraging clinicians to think about their own mortality could promote more openness around death, thus, enabling them to provide better care for their patients. This finding is in line with a mixed methods study of 150 healthcare workers conducted by Melo and Oliver (2011), which explored the impact of a six-day training course on healthcare workers' death anxiety and burnout levels. The training course consisted of two modules: enhancing communication and understanding of patients' spiritual and psychological needs and personal introspection of death anxiety (Melo & Oliver, 2011). The study revealed that the training course successfully reduced death anxiety and burnout levels in healthcare workers. Therefore, the current study supports previous findings (Melo & Oliver, 2011; Sinclair, 2011), suggesting that reflecting on death-related fears and beliefs can reduce death anxiety, thus contributing to more openness around death. 6.2.3 Spiritual and Near-death Experiences The current study found that spiritual and near-death experiences can significantly impact an individual's openness towards death and dying, with sixteen out of forty participants stating that such experiences directly contributed to their openness. All participants described similar outcomes of their spiritual and near-death experiences (e.g., their experiences either prompted or reinforced their belief in the afterlife and reduced death-related fears and anxieties). For these participants, their spiritual experiences comforted them when thinking and talking about death and dying because they no longer feared death due to their belief in the afterlife. Similar to previous research, the current study found that participants were not frightened by their spiritual or near-death experiences; instead, they found them meaningful, significant, reassuring and comforting (Gariglietti & Allison, 1997; LaGrand, 2005; Nowatzki & Kalischuk, 2009). Although spiritual and near-death experiences have been recorded since the beginning of human history (LaGrand, 2005), only recently has mainstream psychological research taken such experiences seriously. Many individuals have reported encountering such experiences, and they seem to cut across lines of race, age, gender and religious affiliations (Houck, 2005), with the majority of individuals viewing their experiences as comforting and reassuring (Gariglietti & Allison, 1997; LaGrand, 2005; Nowatzki & Kalischuk, 2009). Like the current study, previous research has demonstrated the lasting transformative impact that such experiences can have on individuals and their existential awareness (LaGrand, 2005; Lommel et al., 2001; Nowatzki & Kalischuk, 2009). Recent research into spiritual experiences has mainly focused on the influence of such experiences on the bereaved, particularly around continuing bonds (Beischel et al., 2015; Chapple et al., 2011; Jahn & Spencer-Thomas, 2014; Walliss, 2001). Research has shown that such experiences (e.g., 243 sensing loved ones after death, receiving messages from the deceased and encountering post-bereavement apparitions) can be helpful in the resolution of grief by providing a sense of connectedness to deceased loved ones through these continuing bonds (Beischel et al., 2015; Chapple et al., 2011; Jahn & Spencer-Thomas, 2014; Walliss, 2001). Most participants in the current study experienced a spiritual encounter after the death of a loved one, such experiences resulted in substantial and enduring transformations in participants' beliefs and worldviews. Supporting this idea, research into post-bereavement apparitions has shown that such experiences can lead to a greater acceptance of death, prompting individuals to see death as a natural part of our life cycle and not something of which to be frightened (LaGrand, 2005; Nowatzki & Kalischuk, 2009). In line with previous research, participants in the current study reported a reduced fear of death and strengthened belief in the afterlife, which resulted in a greater openness towards actively thinking and openly discussing death and dying. These themes are echoed by research into near-death experiences. In the current study, eight out of forty participants encountered a near-death experience that directly contributed to their openness towards death. Near-death experiences are typically described as transcendent experiences that can lead to a new appreciation of life and greater acceptance of death (Greyson, 1992; Noyes et al., 2009). Research suggests that such experiences can motivate individuals to change their goals and values (Greyson, 1983; Morse, 1992). For example, some individuals report a decrease in materialistic goals and an increase in compassion for others after experiencing an NDE (Greyson, 1983; Morse, 1992). Therefore, it could be argued that the transformative influence of near-death experiences resembles the positive psychological changes resulting from posttraumatic growth, as stated in section 6.2.1 (Khanna & Greyson, 2015; Royse & Badger, 2017). However, evidence indicates that the most common characteristic change following a near-death experience is a significantly reduced fear of death (Daniel & Schnell, 2020; Noyes et al., 2009; Lommel et al., 2001; Noyes, 1980), which was evident in the experiences described by participants in the current study. Participants in the current study described similar outcomes to the research cited above. However, the transformative changes that occurred after such experiences also prompted participants to actively engage with and discuss death-related topics more broadly (e.g., outside the context of their spiritual and near-death experiences). To my knowledge, this is the first study to suggest a relationship between spiritual and near-death experiences and openness towards death-related conversations more broadly. Although such experiences can have a profound impact on the lives of those who experience them, many studies indicate that there is a reluctance for individuals to discuss their spiritual or near-death experiences with others (Gariglietti & Allison, 1997; LaGrand, 2005; Noyes et al., 2009). For example, 244 LaGrand (2005) argues that people often dismiss such experiences as psychopathological signs, particularly when these experiences occur after a bereavement. This could explain why in the current study some participants described being cautious about discussing their spiritual and/or near-death experiences with others for fear of being ridiculed or labelled as “crazy,” “weird”, or “different.” Additionally, this could also explain why during the interviews, some participants would go back and forth between explaining their experience and then trying to justify their experience. This suggests that the stigma around such experiences can prevent individuals from engaging in these types of conversations with others for fear of being judged, thus, highlighting the importance of validating such experiences as normal. One way to normalise transcendent experiences is to engage the public with materials relating to such experiences. For most participants in the current study, their spiritual and near-death experiences prompted them to explore and engage with materials relating to after-death beliefs in order to make sense of their experiences. However, for others, although they had not encountered a spiritual or near-death experience, learning about such experiences either by engaging with related materials or hearing about the experiences of others contributed to their openness around death. Similarly, other studies have shown that the same change in attitudes towards death can be observed in students studying near-death experiences (Ring, 1995). For example, Ring (1995) conducted two studies examining the impact of learning about near-death experiences on psychology students. The findings revealed that students held a more positive attitude towards death, reported a greater appreciation for life and became less anxious about dying after exploring the topic of near-death experiences. This supports the current study as participants described how exploring such topics reduced death-related fears and anxieties. Supporting this idea, a study by Testoni et al. (2020) revealed that engaging in a death education class aimed at opening up conversations around death and spirituality reduced the fear of death in 190 Italian students. The current study's findings indicated that exploring materials relating to spiritual and near-death experiences contributed to more openness around death and dying regardless of having first-hand experience of spiritual or near-death encounters. Exposure to such information could help to reduce fears around death and encourage others to actively think and openly talk about death and dying; therefore, it could be beneficial to further explore the impact of materials relating to spiritual and near-death experiences on the general population. Although the current study found that death-related experiences encouraged individuals to become more open to death and dying, it is not useful, or true, to suggest that only those who experience death can become more open to the subject. Although most participants were prompted by their death-related experiences to become more open, their death-related experiences led to other 245 processes and concepts that contributed to more openness such as recognising the benefits of openness and exploring their relationship with death. For most participants, their death-related experiences served as a gateway to explore death-related issues more broadly. 6.3 Encouraging Others to Recognise the Benefits of Openness The current study revealed that recognising the benefits of openness played an important part in encouraging participants to become open to thinking and talking about death and dying. Most participants were prompted to recognise the benefits of openness after a specific death-related experience. Recognising the benefits of openness not only prompted participants to become more open to the subject but also played a part in their continued openness towards the subject (e.g., continually reflecting on previous death-related experiences reinforces the belief that openness towards death is beneficial). For most participants, reflecting on previous death-related experiences prompted them to recognise the benefits of openness in order to plan practically for death. Research has found a positive relationship between death-related experiences and recognising the benefits of advance care planning (Kavalieratos et al., 2015; Sanders & Robinson, 2017; Tripken & Elrod, 2018). For some participants in the current study, recognising the benefits of openness encouraged them to begin actively thinking about and engaging in conversations around practically planning for death with others in mind. This is in line with previous research that indicates that death-related experiences can prompt individuals to recognise the benefits of openness, thus encouraging greater consideration about end-of-life wishes and care (Carr & Moorman, 2009; Fleming et al., 2016; Robinson & Sanders, 2019; Kavalieratos et al., 2015). In line with the current study, Fleming et al. (2016) found that positive death-related experiences reduced death-related fears and anxieties in those over ninety-five, however, negative death-related experiences heightened worries around the process of dying and the impact of the death on those left behind, thus resulting in more consideration around end-of-life planning. This is consistent with the current study, as participants were prompted by their death-related experiences to recognise the benefits of openness in actively planning for death in order to prevent distress for surviving family members. Similarly, Carr and Moorman (2009) found that individuals are twice as likely to reject life-prolonging treatment after witnessing a painful death. Therefore, death-related experiences may provide people with an opportunity to actively think and openly talk about their end-of-life preferences with others in order to prevent distress for surviving family members. This could suggest that those who have experienced a particularly negative death-related experience may be motivated to engage in death-related conversations with family and friends in order to protect their loved ones who are likely to take on the roles of decision-maker and caretaker at the end of life. This is in line with the current 246 study as participants frequently expressed the benefits of pre-emptively thinking about and discussing end-of-life wishes in order to prevent regret and distress for surviving family members. In Carr and Moorman's study, participants were motivated by their previous death-related experiences to actively plan for death in order to spare their families from emotional and physical distress (Carr & Moorman, 2009). Participants in the current study emphasised the benefits of being open to death in order to reduce the burden on surviving family members. For some participants, recognising the benefits of death-related conversations, particularly around preventing distress for those left behind, opened up death-related discussions with family and friends. Research suggests that advance care planning can reduce the burden on loved ones (Detering et al., 201o); therefore, encouraging individuals to recognise the benefits of openness, particularly around preventing distress for surviving family members, could motivate people to start actively thinking and openly talking about end-of-life wishes. In addition, recent research indicates that young adults may be prompted by their death-related experiences to recognise the benefits of openness around end-of-life planning (Robinson et al., 2019; Kavalieratos et al., 2015). A recent study exploring attitudes towards end-of-life planning in young adults found that previous death-related experiences prompted participants to recognise the benefits of pre-emptively discussing end-of-life care with others (Robinson et al., 2019). Participants in the study described various death-related experiences that led them to see the benefits of openness around advance care planning (e.g., experiencing a NDE or the death of a loved one) (Robinson et al., 2019). Participants connected their previous death-related experiences with specific end-of-life wishes (e.g., the decision to take someone off life support), thus prompting them to recognise the benefits of openness to prevent distress for surviving family members (Robinson et al., 2019). In the current study, only two participants were under 30; however, several participants stated that death-related experiences in their 20s led to more openness around death. Therefore, such experiences could encourage young people to engage in openness around end-of-life wishes. Although most participants were prompted to recognise the benefits of openness after a specific death-related experience, promoting awareness of the benefits of openness more generally could encourage individuals to become more open to the subject. Research suggests that the majority of individuals living in the UK believe that openness towards death is beneficial (Co-Op, 2019; Llewellyn et al., 2016; Marie Curie, 2021); however, few engage in such discussions (Co-Op, 2019; Marie Curie, 2021). For example, a survey by Marie Curie (2021) revealed that most individuals acknowledge the importance of pre-emptively engaging in death-related discussions to reduce the burden on close family and friends; however, only 14% of individuals had done so. This could suggest that although individuals recognise the benefits of openness, they may find these conversations difficult or feel as 247 though these conversations are not relevant to them. In relation to relevance, there is a lot of focus on planning for end-of-life and recognising the benefits of openness in preventing negative end-of-life care; however, such initiatives could include more broader positive outcomes of actively thinking and openly talking about death, such as a greater appreciation for life. Participants in the current study indicated that although not part of their initial openness, engaging with death has prompted them to live life more meaningfully; as a result, this encouraged them to continue their openness towards the subject. Encouraging individuals to see how openness towards death can enhance life may lead to more openness around other death-related issues, such as end-of-life planning. 6.4 Terror Management Theory (TMT) and Meaning Management Theory (MMT) As stated above, in the current study, participants described how becoming more open to death encouraged them to live life more meaningfully. Although not part of their initial openness, this change in perspective played a part in their continued openness towards the subject. Terror management theory (TMT) offers an indirect explanation for this mediating effect. For example, as stated in section 2.4, TMT suggests that anxiety is triggered by an individual's inevitable awareness of death (mortality salience); as such, people have developed various defence mechanisms to combat death anxiety (Rosenblatt et al., 1989). Terror management theory predicts that individuals who adhere to their cultural values, which offer a sense of meaning in life, are better protected against the potential anxiety caused by mortality salience (awareness of death) (Rosenblatt et al., 1989). Another defence mechanism against death anxiety is self-esteem (Harmon-Jones et al., 1997). Research suggests that individuals with higher self-esteem report lower levels of death anxiety (Zhang et al., 2019). Individuals can raise their self-esteem by enhancing a sense of meaning in life, thus defending against death anxiety (Zhang et al., 2019). This is supported by many studies indicating that perceived meaning in life can negate death anxiety (Lekes, 2022; Lyke, 2013; Routledge & Juhl, 2010; Tang, 2002; Zhang et al., 2019). Although TMT proposes that mortality salience can increase death anxiety, for participants in the current study, actively engaging with death reduced death anxiety. It could be suggested that actively engaging with death increased participants meaning in life (living life more meaningfully), thus raising their self-esteem and reducing death anxiety. Alternatively, meaning management theory (MMT) could be used to explain the current study's findings. Meaning management theory argues that people are meaning-making and meaning-seeking; therefore, our primary motivations are to survive and to find meaning and reason to survive (Wong & Tomer, 2011). Although meaning management theory recognises the defence mechanisms of TMT, MMT suggests that because individuals want to live meaningful lives, people tend to focus on positive growth rather than developing defence mechanisms to cope with death anxiety (e.g., if 248 people believe that their life is meaningful, then they may not feel threatened by death) (Wong & Tomer, 2011). Participants in the current study stated that exploring their relationship with death enhanced their lives and improved their psychological well-being by encouraging them to live more meaningfully. Although this was an outcome of becoming more open to death, this shift played a part in their continued openness towards the subject. This could imply that becoming more aware of mortality could encourage individuals to see the positive aspects of life. This is supported by previous research suggesting that frequently reflecting on mortality can prompt people to re-evaluate their materialistic values, thus encouraging a move towards more growth-orientated, meaningful intrinsic values which instil a greater meaning in life (Tang et al., 2002; Vail et al., 2012). This may suggest that promoting the idea that openness towards death can lead individuals to live life more meaningfully could reduce death anxiety and prompt more openness towards death. Although TMT asserts that individuals that adhere to their cultural values are better protected against anxiety caused by mortality salience, for some participants in the current study, learning about how other cultures deal with death reduced death anxiety and led to more openness around the subject. A study by Kellams and Blascovich (2012) revealed that cultural differences in attitudes towards death can affect an individual's meaning in life, thus contributing to different levels of death anxiety. The study found that Eastern Asian participants (who think about life more holistically) were more likely than European American participants (who think about life as linear) to think about life's enjoyments when exposed to mortality salience, thus reporting reduced levels of death anxiety (Kellams & Blascovich, 2012). In relation to the current study, some participants described how exploring different cultural views on death contributed to their openness around the subject. Participants frequently referred to a need for a "cultural shift" in how death and dying are perceived in the UK, implying that other cultures as less death averse than the UK. Therefore, exploring how other cultures deal with, perceive and celebrate death could help people deal with thoughts about their own mortality, thus promoting more openness around death and fostering a greater appreciation for life. 6.5 Openness with Children Towards Death Another theme present in the data was the importance of death-related conversations with children. Participants highlighted the benefits of normalising death with children and not excluding them from such discussions. For these participants, recognising the benefits of openness towards death with children prompted them to facilitate death-related discussions with their own children and grandchildren. 249 Children will experience bereavement; therefore, it is important to explore the subject of death with children openly. For example, Harrison and Harrington (2001) found that 78% of children under sixteen in the UK have experienced the death of a close friend or relative. There has been a significant amount of research into how children comprehend death (Kirwin & Hamrin, 2005; Paul, 2019) and the potential benefits of death-related conversation with children (Paul, 2019; Marie Curie, 2020; Stylianou & Zembylas, 2018). Research suggests that adults are often uncomfortable initiating death-related conversations with children (Friesen et al., 2020; Kennedy et al., 2017; Stylianou & Zembylas, 2018). Some academics argue that a reluctance to engage in death-related conversations with children is partly to do with concerns around death being a morbid subject that might induce fear in children (Jackson & Cowell, 2001). Others indicate that death-related conversations with children are avoided because of the belief that children can and should be protected from the fear and pain of death (Campanera Reig et al., 2018; Friesen et al., 2020; Mahon et al., 1999). However, evidence suggests that children can and want to engage in death-related discussions (Campanera Reig et al., 2018; Jackson & Colwell, 2001; Paul, 2019; Stylianou & Zembylas, 2018). Research suggests that children are capable of understanding death between the ages of five and seven years old (Child Bereavement UK, 2022), and avoiding such conversations with children can be damaging to their development (Dowdney, 2008; Branch & Brinson, 2007). Moreover, research suggests that early childhood bereavement can result in physical and psychological health problems in later life (Kirwin & Hamrin, 2005; Luecken, 2000; Luecken & Appelhans, 2006; Nicolson, 2004; Tsuchiya et al., 2005). My grounded theory indicated that for most participants early childhood death experiences did not promote or hinder openness around death; however, participants acknowledged the significant impact that their childhood experiences of death had on them in later life. Participants reflected on their early childhood experiences of death in great detail, thus indicating that the memory and associated feelings of such experiences have remained with them. Reflecting on how they felt prompted participants to recognise the benefits of openness around death with children, thus encouraging them to become more open with their children and grandchildren. Despite the overwhelming evidence that openness towards death with children is important, children are often denied access to death-related information and are frequently absent from death rituals (e.g., funerals) (Campanera Reig et al., 2018; Fristad et al., 2001). In the current study, participants frequently mentioned being denied the opportunity to attend the funerals of deceased loved ones during childhood. For some participants, this is still something they think about to this day (e.g., being denied the opportunity to say goodbye). This highlights the importance of how death 250 is handled during childhood and the impact that protecting children from death can have in later life. For some participants, remembering the feelings of confusion and isolation experienced after a childhood death-experience prompted them to recognise the benefits of openness towards death with children, thus encouraging them to actively engage in death-related conversations with their own children and grandchildren. In line with previous research (Friesen et al., 2020; Stylianou & Zembylas, 2018), participants in the current study indicated that encouraging openness towards death in early life could lead to a more death-open society, with some participants suggesting that this could be achieved via death education in schools. 6.6 Death Education in Schools In relation to the finding stated above, participants suggested that death education in schools would promote more openness around death and dying, indicating that it is through this early intervention that more openness around death can be achieved. Participants suggested that death education could be embedded into the school curriculum in various subjects such as history, science, PSHE and religious studies. This finding supports the efforts of many recent health initiatives that advocate for death education in schools (Adams, 2022; Marie Curie, 2022; National Bereavement Alliance, 2019). Moreover, like the current study, recent studies have shown that those living in the UK believe that educating children on matters relating to death and dying is essential to normalising death-related conversations (Wilson et al., 2022). For example, Wong (2002) argues that a lack of opportunities to engage in death-related conversations can lead to death anxiety; therefore, death education in schools could "lift the taboo around death" and reduce death anxiety by providing students with an opportunity to actively engage in such discussions (Stylianou & Zembylas, 2018). This could indicate that encouraging death education in schools could negate the need for public health interventions if openness towards death could be achieved through early exposure to the subject. Several academics refer to the benefits of integrating death education into the school curriculum (Friesen et al., 2020; Jackson & Cowell, 2001; Paul, 2019; Stylianou & Zembylas, 2018). For example, Jackson and Cowell (2001) suggest that death education should be embedded into the existing UK national curriculum, where death is talked about as a natural part of our lifecycle. Some examples of how Jackson and Cowell (2001) suggest that death education could be embedded into the existing UK national curriculum include incorporating death into history (e.g., burial practises - ancient Egypt and mummification) and mathematics lessons (e.g., field trips to local graveyards to calculate the average age of deaths). In relation to the current study, participants provided examples of how death education could be embedded into existing educational subjects (e.g., history, science, PSHE and religious studies). It is asserted that age-appropriate death education programmes will provide children with accurate information to help them cope with bereavement (Stylianou & Zembylas, 251 2018). Participants in the current study frequently mentioned the benefits of openness in helping children to cope with bereavement. Participants reflected on previous childhood experiences and described the importance of death-related themes in children's films and literature (e.g., Harry Potter and the Disney film 'Coco'). For one participant, such themes helped validate her feelings and reduced the feeling of isolation after experiencing her grandfather's death. Research into implementing death education programmes in schools has produced promising results. For example, a death education programme implemented in Shropshire found that students expressed many significant benefits after attending the course, such as increased confidence, a greater willingness to help bereaved others and a greater desire to discuss death-related issues (Wester & Walker, 2017). Similarly, a qualitative Cyprian study by Stylianou and Zembylas (2018) explored the influence of an educational intervention on how ten- to eleven-year-olds perceived grief. The findings revealed that the intervention helped children to understand the concept of grief whilst also encouraging them to open up death-related conversations with their parents and friends. Therefore, evidence supports my participants' claims that death education in schools will help to promote more openness around death and dying. 6.7 Engaging with the Subject of Death Another prominent theme was engaging with the subject of death. Most participants stated that actively engaging with the subject of death directly contributed to more openness around death. Participants indicated that exploring their relationship with death via engaging with the subject has helped to reduce death-related fears. The majority of research into encouraging death-related conversations has focused on the barriers and facilitators to engaging in such conversations (See Table Two). Therefore, my grounded theory extends previous research by suggesting ways in which certain barriers to death-related conversations can be overcome. For example, research suggests that the fear of death is a significant barrier to engaging in death-related conversations (Brown et al., 2014); however, the current study showed how individuals overcame this barrier by exploring and addressing death-related fears through exploring their relationship with death. Participants began exploring and addressing their death-related fears in a variety of ways (e.g., actively engaging in materials relating to death and dying). For example, fears about the unknown were overcome by engaging with materials relating to after-death beliefs. Similarly, fears around dying were overcome by actively engaging with informative materials relating to the process of dying (e.g., Kathryn Mannix’s book ‘With the End in Mind’ and Stephen Jenkinson's book 'Die Wise'). Previous research has indicated that encouraging individuals to actively engage with the subject of death can encourage more openness around discussing end-of-life issues (Abba et al., 2013). For example, Abba et al. (2013) conducted a systematic review to assess the effectiveness of community-based 252 interventions in encouraging individuals to think and openly discuss end-of-life planning with close family. The review found that encouraging individuals to actively engage with the subject of death was more effective than passively providing people with information (such as lectures). However, the data was limited, with only one out of the five papers explicitly referring to the effects of such interventions on encouraging individuals to think about and discuss end-of-life planning. Similarly, in Durlak and Riesenberg's meta-analysis of forty-seven studies, they found that didactic death education (lectures, discussions, PowerPoint presentations) increased discomfort with death, whereas experiential death education (roleplaying, reflecting on death-relates issues and sharing personal feelings on the topic of death and dying) reduced death-related fears and anxiety (Durlak & Riesenberg, 1991). Contrastingly, a meta-analysis by Maglio and Robinson (1994) found that both approaches to death education increased death anxiety in students. However, the meta-analysis indicated that didactic education led to a higher level of death anxiety than experiential education (Maglio & Robinson, 1994). In relation to the research cited above, in the current study participants described how actively engaging with the subject of death helped to reduce fears; this adds to the previous body of research indicating that experiential learning has a greater probability of reducing death-related fears and promoting more openness around death and dying. Participants cited many useful resources that contributed to their openness towards death (see Table 15 - Sources of Information About Death and Dying Explored by Participants); therefore, such resources could be useful to a didactic approach to death education. In addition, research into online death education courses indicates that such courses can inspire a more positive attitude towards death. For example, Miller-Lewis et al. (2021) used textual sentiment analysis to assess how attitudes towards death changed throughout an online death education module. Participants were asked to write down three words describing their feelings towards death before and after completing a MOOC focused on accepting death as a natural part of our life cycle. The results indicated a positive change in attitudes towards death after completing the course. This is in line with the current study as online death education courses were cited by some participants as contributing to their openness around death. In addition, some participants stated that actively exploring the subject of death led them to become more death literate, thus not only promoting openness but also encouraging individuals to explore the subject of death further. This could suggest that openness towards death could be achieved by encouraging death literacy. Research suggests that communities with a high level of death literacy are more open to thinking and talking about death and dying (Noonan et al., 2016), therefore, death literacy could be positioned within a public health approach to end-of-life care or made available through online death-education modules. 253 Participants in the current study indicated that exploring their relationship with death via actively engaging with the subject contributed to their openness around death. Similar to the research cited above, for my participants, engaging with death has promoted more death awareness and helped to ease death-related fears, thus contributing to more openness around the subject. Therefore, the findings support the notion that death education courses both in person and online that prompt individuals to reflect on their own mortality and actively engage in materials relating to death and dying could encourage individuals to become more open to death. In line with previous research, the current study implies that death education may provide a unique opportunity to promote openness towards death and dying pre-emptively. For example, online death education modules could be used to encourage openness towards death within the general public. The majority of participants in the current study indicated that their death-related experiences prompted them to start exploring the subject of death; therefore, it would be helpful for education initiatives to recognise an individual's previous history of death in order to encourage people to actively think and openly talk about death and dying. 6.8 Engaging with the Death Positive Movement As stated above, the current study found that engaging with the subject of death encouraged participants to become more open to thinking and talking about it. Participants started to engage with death in numerous ways; however, the most common was through learning about death-related issues. For some participants, exploring the subject of death involved engaging with and participating in death positive initiatives and events both online and in person. As stated in section 2.6 the death positive movement is at the forefront of promoting more openness around death and dying and has given rise to such initiatives as the Order of the Good Death, Death over Dinner and Death Cafés. Research into the influence of death positive initiatives and events on encouraging individuals to actively think and openly talk about death and dying is relatively new; however, the evidence yields promising results (Baldwin, 2017; Lambert et al., 2017; McLoughlin et al., 2016; Mroz et al., 2022; Parry et al., 2021). In the current study, participants reported that attending Death Café events had contributed to their openness around death. Participants described how attending such events provided them with a safe space to explore the subject of death and engage in open conversations around death and dying. Research indicates that other attendees frequently describe Death Cafés as "safe" and "interesting" places to explore the subject of death (Miles, & Corr, 2017). Research into the influence of Death Cafés on encouraging openness has indicated that such initiatives can be a useful tool in encouraging individuals to actively think and openly talk about death and dying (Baldwin, 2017; McLoughlin et al., 2016; Parry et al., 2021). For example, a Welsh study of fifty participants by Parry 254 et al. (2021) assessed the effectiveness of attending a Death Café in encouraging death-related discussions. Feedback from the event indicated that participants believed that Death Café events will break the stigma around death-related discussions. This opinion was shared by participants in the current study. This finding is also supported by Koksvik and Richards (2021) in their study on Death Café facilitators. The study found that all forty-nine Death Café facilitators expressed similar views about death being a taboo despite varying cultural and religious affiliations. As the Death Café initiative is rooted in the assertion that death conversations are avoided, it is likely that those who attend Death Cafés believe that there is a societal taboo which they do not share and which they want to challenge. This is supported by the current study as during interviews, there was a sense that participants felt different from others, they were open others were not. The words chosen to describe how others felt about death demonstrated the assumptions that individuals make about the perceived negative feelings of others regarding death. This assumption has implications for those who wish to drive a national conversation around death and dying (e.g., if people perceive others as unwilling to engage in death-related conversations, they will be less likely to initiate such conversations with family and friends, thus leaving the potential for important things left unspoken). This begs the question, why did participants in the current study assume that others felt differently about actively thinking and openly talking about death and dying than they did? Part of the explanation could be the self-selected nature of the study: most participants chose to participate in the study because they were open to actively thinking and openly talking about death and dying. Therefore, the nature of the study could have furthered the assumption that others are not open to death. Another explanation could be that research, public health initiatives, and death-related campaigns continuously assert that death is avoided and, therefore, is something that needs to be tackled. Other studies have also shown Death Café events to be useful in promoting openness towards death. For example, a qualitative study by Baldwin (2017) indicated that Death Cafés were effective in helping individuals to initiate and engage in death-related conversations outside of the Death Café environment. This is in line with the current study as participants described how attending Death Café events prompted them to continue engaging in death-related conversations with family and friends. Similarly, in addition to providing a "safe space" to discuss death-related issues, the death-related resources and information provided at the Death Cafés prompted participants in the current study to further engage with the subject of death. In the current study one participant was inspired to create a WhatsApp group with his children to discuss his end-of-life wishes after attending a death café. Therefore, promoting awareness of such initiatives could contribute to more openness around end-of-life planning and death more broadly. Moreover, Baldwin (2017) also found that 255 many Death Café facilitators (death café volunteers) had personally experienced death. This is in line with the current study, as most participants were prompted to engage with the subject of death after a specific death-related experience. Participants in the current study recognised the benefits of openness towards death in alleviating death-related fears and anxieties. Such initiatives allow individuals to express their fears and concerns, thus prompting them to recognise that they are not alone in their fears and experiences of death. In addition to the well-known death positive initiatives (e.g., Death Café), for some participants in the current study, following lesser-known death positive pages on Facebook and Twitter have contributed to their openness around the subject. Participants stated that following such pages urged them to actively think about and engage with the topic of death by encouraging them to reflect on their mortality at least once a day. Following such groups encouraged them to continuously engage with the subject of death, thus raising their awareness of all things death related. Therefore, death positive initiatives such as Death Over Dinner and Death Café are useful in promoting openness around death as they offer a social platform for initiating and engaging in death-related conversations, thus prompting individuals to reflect on morality. Similarly, studies have shown that the participants consider the media to be a powerful tool for breaking the taboo around death (Llewellyn et al., 2016; MacKenzie & Lasota, 2020). For example, in a study by Llewellyn et al., (2016) participants cited funeral advertisements as triggering death-related conversations around planning practically for death with family members. Participants expressed similar views in the current study suggesting that through media campaigns the topic of death could be normalised, thus, resulting in a more death open society. This could suggest that using the various entry points provided by the media could result in more openness around death and dying. 6.9 Barriers to Openness The findings revealed that openness was not a straightforward phenomenon; instead, it was conditional and affected by societal factors (or the assumption of how participants believe others view death within society). Although all participants were open to thinking and talking about death and dying, openness varied between participants. Openness changed depending on the aspect of death they were talking about, whom they were talking to, and the situation in which the conversation arose. For example, participants were more open to talking about the religious, philosophical and spiritual and practical aspects of death and less open to talking about the emotional aspects of death. This is supported by previous research indicating that individuals feel more open to discussing the practical aspects of death than the emotional feelings associated with the death of oneself or close others 256 (Academy of Medical Science & Ipsos Mori, 2019; Wilson et al., 2022). For example, Wilson et al. (2022) found that participants were more open to thinking about and discussing the "hardware" (e.g., the practical aspects of death) over the "software" (e.g., the emotional aspects of death). Similarly, a selection of workshops organised by the Academy of Medical Science and Ipsos Mori (2019) revealed that individuals were more open to discussing the practical aspects of death (e.g., funeral arrangements and medical treatments) than the emotional aspects of death. Although participants in the current study revealed that they would be most open to discussing the religious, philosophical and spiritual aspect of death, research indicates that some individuals feel reluctant to engage in these types of conversations (Graham-Wisener et al., 2022). For example, an Irish study of 381 participants by Graham-Wisener et al. (2022) used open-ended questions to explore the barriers and facilitators to death-related conversations. The study revealed that non-religious participants were reluctant to engage in death-related discussions with those with strong spiritual or religious beliefs for concerns about offending. This finding was not evident in the current study; however, participants who had encountered a spiritual experience or held strong spiritual beliefs were reluctant to discuss their experiences and beliefs with others for fear of being ridiculed. As the UK is an expanding multi-cultural society, with increasingly more individuals identifying as non-religious (ONS, 2021), increasing awareness of different belief systems may encourage individuals to be more open to discussing such issues (Graham-Wisener et al., 2022). Participants in the current study identified specific individuals with whom they were reluctant to engage in death-related conversations (e.g., family, the elderly, or those that are terminally ill) for fear of upsetting, burdening or triggering them. Similarly, Wilson et al. (2022) found that participants were more open to discussing death hypothetically as opposed to discussing the topic with someone who was imminently facing death. In the current study, one participant suggested that they would be "wary" of engaging in death-related discussions with those that were elderly or terminally ill for fear of “triggering” them. Some participants in the current study stated that they would find it most challenging to initiate death-related conversations with close family for concerns around burdening or upsetting family members. This is consistent with a qualitative study by McIlfatrick et al. (2021) that found that participants avoided death-related discussions with family and friends for fear of causing distress or upset. This could suggest that the sensitive nature of such conversations could restrict who these conversations are with and the context in which these conversations arise. This is evident in other studies that indicate that a significant barrier to engaging in end-of-life conversations is the fear of upsetting others (Graham-Wisener et al., 2022). 257 The current study aligns with recent research in this field (Graham-Wisener et al., 2022; Islam et al., 2021; Wilson et al., 2022). However, as stated in section 1.2.4, previous research has its methodological limitations. Therefore, my grounded theory extends previous research by providing a more in-depth description of how individuals become open to thinking and talking about death and dying. Another theme present in the data was the perception that death is a taboo subject (this theme was prominent across all interviews). The current study's findings indicated that for some participants, the perceived societal belief that death is 'taboo' had influenced their openness towards death and dying. For some participants, the belief that others were unwilling to engage in death-related conversations hindered and sometimes prevented participants from engaging in death-related conversations with others, even when they felt comfortable with the topic themselves. Recent surveys indicate that although individuals report being open to death-related conversations, most individuals have not engaged in them (Dying Matters, 2016; British social attitudes survey, 2012; Marie Curie, 2021). For example, a recent survey into public attitudes towards death and dying suggests that 84% of people state that there is nothing preventing them from engaging in such conversations; however, only 14% have actually initiated such conversations (Marie Curie, 2021). One possibility for the gap between people's proclaimed openness and actually doing so could be the perception that others are unwilling to engage in such conversations. This is a significant barrier to encouraging individuals to actively think and openly talk about death if people perceive that others are unwilling to engage in such discussions. Although participants assumed that others are unwilling to engage in death-related conversations, this perception was reinforced by their experiences of others avoiding such conversations. Exploring the presence of the death taboo within the UK was outside the scope of this study, however, the overwhelming response from individuals wanting to take part in the research would suggest that death is not seen as a taboo subject within the UK. The findings align with previous research which indicates that the death taboo is more “perceived than real” (Miller-Lewis et al., 2021; Wilson et al., 2022). Therefore, the current study adds to existing sociological research suggesting that the death taboo is “grossly overdrawn and lacking in subtlety” (Walter, 1991, p309). However, whether or not death is taboo, the findings suggested that the perception that death is taboo has hindered people from engaging in death-related conversations with others. This is problematic when those that wish to drive the national conversation around death and dying (e.g., the death positive movement, end-of-life policy, campaigns and public health approaches) assert that others are opposed to engaging in such discussions. It could be argued that the assertion that death is taboo reinforces the idea that death should not be talked about. For example, as stated in 258 section 2.6, the death positive movement rests on the assumption that death is taboo; however, the findings of the current study suggest that in doing so, the death positive movement could actually be reinforcing the idea that death should not be discussed, thus further preventing individuals from engaging in death-related conversations. Recent research has shown that many individuals believe that others are unwilling to engage in death-related conversations (Graham-Wisener et al., 2022; Islam et al., 2021; Miller-Lewis et al., 2021 De Souza et al., 2020; Peterson et al., 2018) therefore, instead of focusing on the narrative that death is taboo, those who wish to drive the national conversation around death and dying should be encouraged to focus on the life enhancing impact that becoming open to death can have on how people live their lives. 259 Chapter Seven: Conclusion 7.1 Introduction This chapter starts by looking at the strengths and limitations of my study and the grounded theory that was developed from it. I will then use Charmaz’s criteria for evaluating grounded theory studies to demonstrate the credibility, originality, resonance and usefulness of the developed grounded theory. Lastly, I will discuss the implications for practice and further research before reiterating the key findings of my grounded theory study. 7.2 Strengths and Limitations The current study aimed to develop a substantive theory that explores the process behind how individuals become open to death communication, an aim that has been achieved and demonstrated in this thesis. To my knowledge, this is the first study to explore how individuals become open to death communication and to suggest how continued openness towards death and dying can be achieved. From the beginning of this study, I held the firm belief that death and dying are experienced in complex and multiple ways; therefore, this study does not intend to represent how all individuals become open to death and dying; however, my grounded theory offers the first step towards understanding how this can be achieved. Previous research has mainly focused on facilitating death-related conversations with those that are elderly or terminally ill (Amjad et al., 2014; Bernard et al., 2020; Glaudemans et al., 2020; Im et al., 2019; Klemmt et al., 2020; Peterson et al., 2018; Stone et al., 2013). Therefore, this thesis offers further research a vantage point by providing insight into how openness around death and dying can be achieved by people more generally regardless of health and age. Unlike previous research in this field, my grounded theory explains how the major categories in this process ('Death-related experiences', 'Recognising the benefits of openness', 'Exploring their relationship with death' and 'Conditions and context of openness') relate to each other in order to provide a more holistic account of how this process was achieved. Similarly, the current study's findings demonstrate how openness towards death evolved, changed and persisted over time (e.g., from death-related experiences to initial openness). Semi-structured interviews and written accounts provided in-depth context-rich data that offered valuable insights into how openness towards death can be achieved. Moreover, using a grounded theory methodology enabled me to develop a substantive theory that explored this process. In doing so, I have been able to make several recommendations for education policy, public health initiatives and those that wish to drive a national conversation around death and dying (e.g., the death positive 260 movement). This will be detailed further in section 7.4 'Implications for Practice and Further Research'. Like all research, the current study has limitations. For example, as stated in sections 4.3 and 4.4, although online interviewing and internet-based recruitment strategies had many advantages, this type of interviewing and recruitment excluded specific individuals from taking part (e.g., those without access to the internet or individuals without digital literacy skills). Similarly, as stated in section 4.4.3, using written accounts as data also had some disadvantages. For example, as was evident in the current study, this method excluded potential participants who found written communication challenging (e.g., those with dyslexia). Although these limitations did not impact the current study's findings (as a grounded theory study does not seek representativeness), these are methodological limitations for other researchers to consider. Another potential limitation of this study is that most participants were recruited from death positive pages and groups; therefore, this could explain why participants described actively engaging with death as contributing to their openness around death (e.g., participants were already actively engaging with the subject via online media platforms). However, participants in the initial sample were not recruited from such groups and indicated that engaging with the subject of death contributed to their openness. Similarly, a significant theme within the data was the perception that death is taboo. As stated in section 6.8, death-positive groups assume that death is a taboo that needs to be overcome; therefore, individuals who join such groups are more likely to hold this assumption. Consequently, this could have contributed to the finding that participants viewed others as unwilling to engage in such conversations. However, this theme was also present in the data gathered from the initial sample. Similarly, the nature of the study could have furthered the assumption that others are not open to thinking and talking about death and dying. For example, agreeing to participate in a study on how individuals become open to death could foster the premise that others are not open to thinking and talking about the topic. Another limitation of the study is that I did not return to participants in the initial sample to ask follow-up questions due to time constraints. After transcribing the initial sixteen interviews, I spent a lot of time analysing and continuously returning to the data to ensure that my participant's voices were carefully captured. Although there was enough data to move on to theoretical sampling, it would have been beneficial to return to the initial participants in order to determine if the analysis resonated with how they viewed their experience of openness. 261 7.3 Evaluating the Grounded Theory Charmaz proposes four criteria for evaluating a grounded theory study: credibility, originality, resonance, and usefulness. In this section I will evaluate the resulting grounded theory study against the criteria proposed by Charmaz (2014). 7.3.1 Credibility • Has your research achieved intimate familiarity with the setting or topic? • Are the data sufficient to merit your claims? • Have you made systematic comparisons in between observations and categories? • Do the categories cover a wide range of empirical observations? Are there strong links between the gathered data and your argument and analysis? • Has your research provided enough evidence for your claims to allow the reader to form an independent assessment and agree with your claims? (Charmaz, 2014, p337) This study aimed to develop a substantive theory that explores the process behind how individuals become open to death communication, an aim which has been achieved and demonstrated in this thesis. Using constructivist grounded theory methods enabled me to make systematic comparisons between the data and resulting categories; therefore, the categories presented in this grounded theory offer a wide range of empirical observations relating to participants' experiences of openness. By exploring how individuals became open to death and dying from the perspective of those who have experienced the phenomena, I was able to achieve intimate familiarity with the research topic. The use of semi-structured interviews and written accounts, in line with Charmaz's approach to grounded theory coding, enabled the emergence of the core categories present in this process. The current study consisted of 40 participants in total: initial sample (n=16), theoretical sampling (stage one) (n=15) and theoretical sampling (stage two) (n=9). All participants provided rich data about the research topic, thus ensuring that the findings could be classed as credible. The ideas and concepts described in this thesis are "grounded" in the data and supported by direct quotations from the participants. Moreover, the broad inclusion criteria in the initial sample allowed for a wide range of participants to take part resulting in a variety of empirical observations on the studied phenomena. Throughout this thesis, I have shown and discussed the logical links between my arguments and the analysis of the data collected from my participants, which I hope will provide the reader with enough evidence to make an independent assessment and agree with the claims proposed in my grounded theory study (Charmaz, 2014). 262 7.3.2 Originality • Are your categories fresh? Do they offer new insight? • Does your analysis provide new conceptual rendering of the data? • What is the social and theoretical significance of this work? • How does your grounded theory challenge extend, or refine current ideas concepts and practices? (Charmaz, 2014, p337) The grounded theory developed in this thesis offers new insights into the phenomena of openness towards death communication. Research into encouraging openness towards death within the general population is relatively new. Previous research has focused on the barriers to death communication in older populations or individuals with health conditions (Amjad et al., 2014; Bernard et al., 2020; Fried et al., 2017; Glaudemans et al., 2020; Im et al., 2019; Klemmt et al., 2020; Peterson et al., 2018; Stone et al., 2013), with very few papers exploring how openness towards death can be achieved within the general public (Graham-Wisener et al., 2022; Islam et al., 2021; McIlfatrick et al., 2021; Wilson et al., 2022). Therefore, my grounded theory is an original contribution as it extends previous understandings of how openness towards death can be achieved by explaining how people begin to actively think and openly talk about death and dying. The current study allowed for a wide range of perspectives on openness towards death, thus, exploring how individuals achieved openness throughout all stages of life. Therefore, the findings have resulted in a new conceptual understanding of how the process of becoming open to death is experienced. The substantive grounded theory developed from the data collected for this study offers a unique way of looking at how openness towards death is experienced, thus providing valuable insights for academics, healthcare professionals and public health approaches aimed at encouraging individuals to actively think and openly talk about death and dying. By using the data to engage with previous research critically, I have demonstrated how the resulting grounded theory supports and extends research in this field (see Chapter Six, ‘Discussion’). For example, previous research into encouraging death-related conversations has focused on the barriers and facilitators to engaging in such conversations. My grounded theory extends previous research by suggesting ways such barriers can be overcome (e.g., overcoming death-related fears by actively engaging with the subject of death or recognising the life-enhancing impact that death communication can have on individuals to live life more meaningfully could negate the barrier that death communication is relevant to their current life stage). Similarly, the current study extends previous research by suggesting that the narrative used to ‘drive the national conversation around death and dying’ could be hindering rather than encouraging individuals to actively engage in death-related discussions (e.g., reinforcing the belief that others are 263 death averse). Equally, the current study could be used to explain recent survey trends indicating a gap between recognising the benefits of death-related discussions and individuals doing so (e.g., the perception that others are unwilling to engage in such discussions because death is considered taboo). Moreover, previous research has mainly focused on encouraging individuals to actively think and openly talk about end-of-life issues. However, the current study extends previous research by focusing on actively thinking and talking about death more broadly. In doing so, this study demonstrated how a broader openness towards death could result in greater consideration and discussion around end-of-life issues. 7.3.3 Resonance • Do the categories portray the fullness of the studied experience? • Have you revealed both liminal and unstable taken for granted meanings? • Have you drawn links between larger collectives or institutions and individual lives, when the data so indicate? (Charmaz, 2014, p337-338) Using a constructivist grounded theory approach, I was able to reveal the liminal and implicit meanings behind participants' statements enabling the creation of a substantive theory that explores the process of becoming open to death and dying. In doing so, I have provided a deeper insight into how openness towards death can be encouraged within the UK. Moreover, by exploring the topic from those who have experienced it, I was able to draw links between the perspectives of my participants to the wider issues around death-related conversations within the UK, such as the perception of death as taboo and overcoming death-related fears and anxieties. By connecting my participants' individual experiences of openness to the existing literature, I have explored ways in which such barriers could be overcome, and I have been able to make suggestions on how others could be encouraged to become open to death and dying (see section 7.4, 'Implications for Practice and Further Research'). The inclusion criteria for the initial sample were deliberately broad to allow for a range of perspectives and experiences of openness; therefore, the categories developed in this grounded theory portray the fullness of how participants achieved openness towards death. Although the broad inclusion criteria aided in developing this grounded theory study, the sample has inherent biases. For example, the sample is skewed towards white middle-class individuals and therefore, does not represent ethnic and social minority groups. Similarly, the sample is skewed towards highly educated individuals which could account for why most participants stated that exploring their 264 relationship with death via engaging with death-related materials aided in encouraging their openness towards death. As stated in section 6.8, there may have been self-selection bias. Participants chose to participate because they were open to death communication and generally positive and interested in the subject. The sample did not include the voices of those not open to death communication, although participants discussed how their openness changed over time (i.e., from closed to open). Therefore, further research could build on the theory produced in this study by exploring the views of those who are not open to death communication. In addition, the broad inclusion criteria allowed for a wide range of experiences leading to more openness towards death; however, other types of death-related experiences, not mentioned in the current study, may influence people’s openness to death in different ways. Death, dying and bereavement are intensely personal experiences, and our views, feelings and interpretations of death will differ depending on our experiences. Such experiences are associated with a wide range of circumstances outside those explored within this study, such as military service, suicide, murder and accidental deaths. The circumstances of death can significantly impact the emotional, practical and spiritual needs of an individual, which could impact their openness towards death communication. For example, no participants in the current study experienced the death of a young child; such an experience could lead to contradictory findings. One participant experienced the death of her grown son; however, her strong spiritual beliefs provided a framework that helped her make sense of his death. The death of a child is an intensely emotional experience that could prompt some individuals to become closed off to death communication; however, this would need to be explored further. In accordance with the above-mentioned, it could be argued that different processes may be involved in how people become open to death communication. However, as stated in section 4.7.2, analysis did not indicate sampling any other type of groups. A constructivist grounded theory study does not seek to generalise the findings based on a representative sample; instead, this study aimed to provide a deeper understanding of the topic of openness towards death communication. Nevertheless, testing the theory with other populations (i.e., young adults, those who have experienced different types of death-related experiences, and ethnic and social minority groups) could address the limitations of the sample, thus further developing and enhancing the substantive theory. 265 7.3.4 Usefulness • Does your analysis offer interpretations that people can us in their everyday worlds? • Can the analysis spark further research in other substantive areas? • How does your work contribute knowledge? How does it contribute to making a better world? (Charmaz, 2014, p338) A grounded theory should be useful to academics and individuals in their everyday worlds. The grounded theory developed from this study is useful as the findings shed light on how openness towards death and dying can be achieved. Therefore, my research provides an increased understanding of what prompts, encourages and enables individuals to become and continue being open to death communication. This is useful to individuals that wish to become more open to death communication and public health approaches aimed at encouraging openness among the general public. Moreover, the findings generated from this grounded theory study could be used to inform education policy, training programmes and public health initiatives that wish to encourage individuals to actively think and talk about death and dying. As demonstrated throughout this thesis, encouraging individuals to become open to death can have many benefits, and the findings of this study provide the first steps towards understanding how this can be achieved. In addition, the findings presented in this study will be useful for future academic research as the findings have sparked further directions for other researchers to pursue (this will be explained further in the next section, ‘Implications for practice and further research’). 7.4 Implications for Practice and Further Research The current study adds its own unique contribution to the small but emerging research area exploring how openness towards death can be achieved within the general population. My grounded theory provides practical guidance for those who want to become open to death and dying and those that wish to encourage more openness towards death within the general public. The findings of this study can be used to inform education policy, training programmes, death positive groups and public health initiatives on how to encourage individuals to become more open to death. Participants in the current study described how exploring the subject of death contributed to their openness around the subject. For some participants, exploring the subject of death involved engaging with and participating in death positive initiatives and events, such as Death Cafés. Therefore, this study supports the idea that death positive events and pages can be helpful tools for encouraging openness towards death (Baldwin, 2017; McLoughlin et al., 2016; Parry et al., 2021). This study recommends that public health approaches link with such initiatives in order to promote openness towards death amongst the general public. Similarly, raising awareness about and the 266 accessibility of safe spaces to openly discuss death, such as death cafes, could be a valuable tool in promoting openness in the general public (Richards et al., 2020). Such initiatives may help in supporting individuals who feel unable to engage in such discussions with family and friends for fear of upsetting others. Although the current study indicated that death positive events such as Death Cafés could be used as promising tools to promote openness around death, research suggests that most death café attendees within the UK are middle-class women working in the healthcare profession (Green et al., 2016). Therefore, it is important to consider how other populations, such as males and those under thirty, could be encouraged to engage with such initiatives. Moreover, participants in the current study suggested that following death positive pages on Facebook and Twitter contributed to their openness around death; therefore, social media could be used to encourage public engagement with the topic of death and dying. Social media platforms such as Twitter, Facebook and Instagram are already being used by death positive groups to encourage and promote death awareness among their followers. Promoting awareness of such platforms could help facilitate death-related conversations by providing people with a safe space to think about and engage with the topic of death. Moreover, social media platforms could also provide individuals with a support network for those who want to continue engaging with the subject of death, as was evident in the current study. Research suggests that those aged 16-30 are the least likely to engage in death-related discussions after experiencing a bereavement (Co-Op, 2019); therefore, social media platforms could reach individuals who may not otherwise engage with the subject of death, such as those under thirty. The study found that an individual’s readiness to engage in death communication may vary overtime; therefore, there is merit in exploring how to normalise death-related conversations at a community level. The findings provide insight into the process behind becoming open to death communication within the UK and offers a way to increase engagement in death communication within a public health approach. As stated in section 2.3, a public health approach to end-of-life care aims to promote social efforts to improve health and well-being at the end of life through community engagement, public education, improvement of social capital, partnerships and policy development (Richard et al., 2020); therefore, the findings of this study have implications for both the death positivity and the public health palliative care movements. For example, as stated in section 2.3, the Health Promoting Palliative Care model designed by Kellehear (1999) pushes for a social model of end-of-life care, where death and dying are positioned within a community context through a series of social efforts by institutions, organisations, 267 communities and governments (Sallnow et al., 2016); therefore, the findings could be used to build community capacity for end-of-life care. Encouraging death communication within the community will help to normalise death as a natural part of life, thus empowering individuals to talk about death in the same way we talk about other important life events thereby reducing the barriers to death communication as stated in section 1.2, such as the fear of burdening or upsetting family members (Bernard et al., 2020; De Souza et al., 2020; Glaudemans et al., 2020; Klemmt et al., 2020; Peterson et al., 2018) and death being a taboo subject (Graham-Wisener et al., 2022; McIlfatrick et al., 2021; Islam et al., 2021; Klemmt et al., 2020). Moreover, the findings of this study can be used to inform strategies to implement compassionate communities across the UK. For example, developing a communication strategy consisting of key themes and messages about the life-enhancing impact of death awareness could promote greater awareness of end-of-life and palliative care, thus enabling the public to feel more open to discussing death and dying. The findings revealed that a significant barrier towards encouraging individuals to engage in death-related conversations is the perception that others find death taboo. As stated in section 6.8, this is problematic when initiatives encouraging openness towards death rest on the assumption that death is taboo. Therefore, public health initiatives and death positive groups aimed at encouraging openness towards death should be urged to change the narrative around death as a taboo in order to prevent reinforcing the idea that death should not be discussed. A prominent theme in recent research is the transformative impact that death awareness can have on how individuals live their lives (Lekes et al., 2012; Sinclair, 2011). Participants in the current study described how becoming open to death encouraged them to live life more meaningfully; this change in perspective played an important part in their continued openness towards the subject. Therefore, one way to change the narrative around death as a taboo could be to focus on the positive impact that becoming open to death can have not only on how people die but also on how they live their lives. Encouraging individuals to see how openness towards death can enhance life may lead to more openness around other death-related issues, such as end-of-life planning. Therefore, the death positivity and public palliative care movements should disseminate information about the life-enhancing impact of death awareness in order to promote more openness around death communication. There are a variety of ways that this information could be distributed (i.e., TV, newspapers, radio, billboards, social media, GP surgeries and libraries). Moreover, the death positivity and public health palliative care 268 movements could come together to raise awareness about the misconception that death is taboo via disseminating information that the death taboo is more perceived than real. Participants cited many useful resources that contributed to their openness towards death (see Table 15 - Sources of information about death and dying explored by participants); therefore, it would be beneficial for future research to explore and evaluate these resources in order to assess their usefulness in promoting openness towards death. Moreover, such recourses could be used to inform future evidence-based interventions aimed at encouraging more openness towards death in the general public. Similarly, as stated in section 6.3, recognising the benefits of openness played a significant part in encouraging participants to actively think and openly talk about death and dying. Moreover, recognising the benefits of openness also contributed to participants' continued openness towards the subject (e.g., continually reflecting on previous death-related experiences reinforces the belief that openness towards death is beneficial). Most participants were prompted by their death-related experiences to recognise the benefits of openness in actively planning for death in order to prevent distress for surviving family members. Therefore, encouraging individuals to recognise the benefits of openness, particularly around preventing distress for surviving family members, could motivate people to start actively thinking and openly discussing end-of-life wishes. In addition, although only two participants in the current study were under 30, they provided examples of death-related experiences in their 20s that encouraged them to become more open to death. Research indicates that young people are becoming increasingly interested in end-of-life planning (Robinson et al., 2019; Mroz et al., 2022). While research has mainly focused on encouraging end-of-life planning with older individuals, this could suggest a desire for young adults to engage in conversations around end-of-life planning. Promoting death-related conversations has become the focus of various campaigns (Dying matters; Sue Ryder; Macmillan Cancer Support; Marie Curie). Such campaigns provide numerous resources on facilitating death-related conversations with others; however, most resources are geared around practically planning for death for those with a life-limiting diagnosis or in older age. Therefore, such campaigns should be urged to provide additional resources to encourage end-of-life conversations with the general public regardless of health and age. Urging healthy young adults to actively think about and engage in death-related conversations could encourage their older parents to follow suit by offering them an entry point to explore the subject of death more generally. Although the research cited in this study has mainly focused on end-of-life planning among adults, it is important to recognise that end-of-life planning is also encouraged for younger populations. For 269 example, the National Institute for Health and Care Excellence (NICE) has produced guidelines, tools and resources aimed explicitly at advance care planning for children and young people with life-limiting conditions (NICE, 2016). Similarly, Together for Short Lives and the Child and Young Person’s Advance Care Collaborative provide information and guidelines for completing an advance care plan on their websites (Together for Short Lives, 2023; Child and Young Person’s Advance Care Collaborative, 2023). Previous research has shown that when ACP conversations are delayed, adolescents and young adults are more likely to experience invasive procedures close to the end of life (Kaye et al., 2018) and are less likely to die in a place of their choosing (Tang & McCorkle, 2001). Furthermore, research indicates that end-of-life conversations can decrease parental regret around treatment decisions (Lichtenthal et al., 2020). For example, a mixed methods study by Lichtenthal et al. (2020) found that 33% of bereaved parents conveyed a sense of unfinished business with their child, with the most commonly mentioned theme being not discussing death more with their child, thus indicating that encouraging openness within the adult population could foster more openness to discuss end-of-life planning with children and young people. Another theme in the data was the importance of openness towards death with children. For some participants reflecting on childhood experiences of death prompted them to recognise the benefits of openness towards death with children. Although most participants stated that their childhood death-related experiences did not influence their openness towards death, for one participant, the death of her grandfather during adolescence prompted her to become more open to death; therefore, it would be beneficial for further research to explore the impact of early death-related experiences on an individual's openness towards death. Moreover, the findings presented in this thesis could have implications for educational policy as participants endorsed the need for death education in schools, suggesting that death education would negate the need for public health interventions. Participants described how death education could be embedded into the school curriculum in various subjects such as history, science, PSHE and religious studies. Some participants cited the Disney film 'Coco' as a helpful tool to encourage children to engage with death; therefore, this resource could be used in developing death education programmes to encourage children's openness towards death and dying. Although research frequently acknowledges the benefits of death education (Adams, 2022; Friesen et al., 2020; Jackson & Cowell, 2001; Paul, 2019; Marie Curie, 2022; Stylianou & Zembylas, 2018; Wester & Walker, 2017), there is little research on how to implement such programmes into the existing UK national curriculum; therefore, further research should be encouraged to evaluate existing death education 270 resources (Childhood Bereavement Network, 2022; Child Bereavement UK, 2022; Children and Youth Grief Network, 2021; Winston's Wish, 2022) in order to establish their usefulness in promoting openness in schools. Although the benefits of integrating death education into the school curriculum are widely acknowledged (Stylianou & Zembylas, 2018; Wester & Walker, 2017), there is currently no requirement for schools in the UK to provide death education (Department for Education, 2021). The present UK curriculum only refers to bereavement as one of the possible topics to cover in PSHE lesson plans (PSHE Association, 2020). As stated in section 6.6, ‘Death Education in Schools’, participants indicated that death education could be embedded into existing subjects (e.g., history, science, PSHE and religious studies). Although such an approach would help normalise the subject of death, implementing grief education into the school curriculum could help children and young people develop the skills needed to facilitate death-related conversations with others and support them to cope with bereavement. As stated in section 5.6, participants indicated that openness was conditional and influenced by other factors. For example, openness varied depending on whom they were talking to and what aspect of death they were talking about. This finding could also be applied to death-related conversations with children and young people; for example, talking about death in school is very different from talking about the potential death of a family member with loved ones. As stated in section 2.5, Paul (2019) found that social norms around being a child may prevent adults from engaging in death-related conversations with children; therefore, the conditions and contexts that influence openness could limit children’s experiences of engaging in death-related conversations outside of school (i.e., some adults may feel as though children are part of what Walter (1991) refers to as a ‘limited taboo’); therefore, the grounded theory may not be applicable to encouraging death communication in children and young people. Further research could build on the theory produced in this study by exploring how children become open to death communication. Moreover, it would be helpful for future research to explore the different conditions and contexts of openness and how this may influence death communication. Such findings would be useful in developing interventions, practical tools and support to help individuals facilitate different types of death-related conversations among different populations. The findings generated by this study also have implications for nursing and medical training. The findings indicated that some participants' experiences at work contributed to more openness around death. Most participants who expressed that their experiences at work led to more openness came from clinical backgrounds (e.g., doctors, nurses, and death doulas). For these participants, such 271 experiences have encouraged them to become more aware of death, thus prompting them to reflect on mortality which has led to a greater openness towards death. For two participants, completing a death doula training programme was significant in encouraging their openness towards death. The training programme urged participants to explore their relationship with death by encouraging them to reflect on fears, beliefs and past experiences of death. Similar training programmes could be designed for other medical professions in order to encourage openness amongst healthcare workers, thus, enabling them to provide better care for their patients. The findings presented in this thesis suggest that openness towards death is experienced in complex and multiple ways; therefore, a more holistic approach is needed to encourage individuals to become more open to death communication. Several factors influenced participants' openness towards death, such as death-related experiences, recognising the benefits of openness, exploring their relationship with death and perceived societal beliefs. Previous research has mainly focused on encouraging death-related conversations around end-of-life planning, often ignoring death's spiritual, religious, social and cultural aspects. However, my grounded theory indicates that encouraging death-related conversations more broadly can lead to end-of-life discussions. For example, participants described how learning about and discussing broader death-related topics such as spiritual and near-death experiences, after-death beliefs and how other cultures deal with death contributed to more openness around death, thus prompting more openness around end-of-life discussions. Therefore, public health initiatives should be urged to adopt a more holistic approach to encouraging death-related conversations within the UK. A qualitative study such as this does not seek representativeness; its value comes from the in-depth, rich, context-specific data and analysis produced throughout the research process. Therefore, factors such as gender, age and ethnicity were not explored, as the overall aim of this research was to explore the process behind how individuals become open to death communication. However, research suggests that levels of death anxiety are affected by age (Depaola et al., 2003, Sinoff, 2017), ethnicity (Depaola et al., 2003), and gender (Iverach & Menzies, 2012), which may affect an individual's openness towards death. The sample for this study is heavily skewed towards white middle-class female participants; therefore, future research could explore individual differences in openness towards death. In addition, some participants acknowledged that their openness towards death could change if their death felt more imminent, such as after receiving a terminal diagnosis. Therefore, it would be beneficial for further research to use a longitudinal design to explore how openness could change throughout an individual's lifetime. 272 7.5 Key Findings and Contributions to Knowledge 7.5.1 Key Findings • Death-related experiences can have a significant impact on peoples openness towards death. • Actively engaging with the subject of death promotes openness around death by increasing knowledge on death-related issues and reducing death-related fears. • Recognising the benefits of openness supports in initial and continuing openness towards death and dying. • Becoming more open to death can lead individuals to live life more meaningfully (this realisation plays a part in continued openness towards death). • Participants suggest that death education in schools is essential to normalising death-related conversations within the UK. • Exploring materials relating to after-death beliefs and death-related fears can contributed to more openness around death and dying. • Openness towards death is not a straightforward phenomenon; instead, it is conditional and affected by societal factors. • The perceived social belief that death is taboo can hinder and sometimes prevent death-related conversations form occurring. 7.5.2 Contributions to Knowledge • Adds to the small but emerging literature on how openness can be achieved within the general population. • Extends previous understandings of how openness towards death can be achieved by exploring how individuals begin to actively think and openly talk about death and dying regardless of health and age. • Extends previous research by demonstrating how individuals have overcome barriers to thinking and talking about death and dying (e.g., overcoming death-related fears by actively engaging with the subject of death). • Previous research has mainly focused on encouraging individuals to actively think and openly talk about end-of-life issues. However, the current study extends previous research by focusing on actively thinking and talking about death more broadly. • The findings can be used to inform education policy, training programmes, death positive groups and public health initiatives on how to encourage individuals to become more open to death. 7.6 Summary The current study aimed to develop a substantive theory that explores the process behind how individuals become open to death communication, an aim that has been achieved and demonstrated in this thesis. To my knowledge, this is the first study to explore how individuals become open to thinking and talking about death and dying and suggest how continued openness towards death and 273 dying can be achieved. My grounded theory identified four main categories that influenced participants openness towards death and dying, ‘Death-related experiences’, ‘Recognising the benefits of openness’, ‘Exploring their relationship with death’ and ‘Conditions and context for openness’. The findings generated from this grounded theory could be used to inform education policy, training programmes and public health initiatives that wish to encourage individuals to actively think and talk about death and dying. Two key findings presented in this study are the perceived social belief that death is taboo can hinder and sometimes prevent death-related conversations from occurring, and becoming more open to death can lead individuals to live life more meaningfully (this realisation plays a part in continued openness towards death). Although contemplating death is often regarded as morbid, conducting this research has given me a greater consideration and appreciation for life. Exploring the topic of death communication has inspired me to live life more meaningfully and embrace life more fully. A positive message about engaging in death communication is needed to foster more openness towards the subject; therefore, future research should focus on the influence of disseminating information about the life-enhancing impact of death awareness on openness to death communication. A prominent theme in both the current study and previous research is the life enhancing impact that openness towards death can have on individuals. All individuals must face death; however, embracing death can help people transform their fears into a source of inspiration to live life more meaningfully. References Aase, M., Nordrehaug, J. E., & Malterud, K. (2008). “If you cannot tolerate that risk, you should never become a physician”: A qualitative study about existential experiences among physicians. 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Palliative Medicine, 18(2), 121-128. https://doi.org/10.1191/0269216304pm858oa Appendices Appendix 1 – Background Information on All Participants Gender Age Religion Occupation Ethnicity (P01) Male 69 Church of England Retired lecturer White P02 Male 70 Quaker – Christian Retired psychiatrist White/British P03 Female 57 Quaker Interfaith minister White P04 Female 61 None End-of-life doula Does not specify 297 P05 Female 47 Catholic University lecturer Does not specify P06 Female 62 Humanism Retired Does not specify P07 Female 39 Buddhist Development Manger British Manx P08 Male 65 Atheist Retired Does not specify P09 Female 58 Draws on various religions Community Matron Does not specify P10 Female 55 Omnist Does not specify White British P11 Female 45 None University associate professor Does not specify P12 Female 58 Spiritualist Care worker White British P13 Male 36 None Clinical psychologist Does not specify P14 Female 39 None – agnostic Research associate Does not specify P15 Female 73 Does not specify Retired professor Does not specify P16 Female 51 Christian Occupational therapist White British P17 Female 58 Heathen Dog walker British P18 Female Does not specify Does not specify Does not specify Does not specify P19 Female 25 Atheist Videographer White British P20 Male 86 Atheist Retired broadcast engineer English white P 21 Female 47 Buddhist Teacher White British P 22 Male Does not specify Does not specify Does not specify Does not specify P23 Female 60 “I have no religion; I believe it to be manmade and has nothing to do with God who I do believe in. Whatever shape or form SHE is lol”. Shop assistant White- British P24 Female 47 Spiritualist Council Deputy’s office White-British P25 Female Does not specify Does not specify Does not specify Does not specify P26 Female Does not specify Does not specify Does not specify Does not specify P27 Female Does not specify Does not specify Bereavement Counsellor White-British P28 Male Does not specify Christian Funeral director White-British P29 Female 32 Atheist PhD student White British P30 Female Does not specify Does not specify Business coach Does not specify P31 Female Does not specify Does not specify Wellbeing coordinator Does not specify P32 Transgender Male 65 Does not specify Bereavement support worker Does not specify 298 P33 Male 37 Atheist Web developer White British P34 Female 80 Spiritualist Retired White Anglo Saxon P35 Male 55 None Management accountant White British P36 Female Does not specify Spiritualist Medium Does not specify P37 Female 32 None Dancer White British P38 Male 33 Methodist VLE and ePortfolio Developer White P39 Male 27 Agnostic Cloud consultant White British P40 Female 74 None Funeral celebrant White British Appendix 2 – The Interview Schedule Potential Interview questions I’ll start by asking what made you want to take part in this study? Thinking about death and dying – What does death mean to you? How often do you think of death? When you do think of death what are the key issues that your thinking of? Can you give me an example? 299 What do you believe happens to us after death? Do you hold any specific religious views about what will happen to you when you die? What does this mean to you? Does that bring comfort to you when thinking about death? Have you ever thought about your own death? What circumstances prompt this and what were the key issues you were thinking about? How did it make you feel? Can you give me an example of a time where you have thought about your own death? Are you afraid of dying? If so, why? Do you remember when you were first able to understand the concept of death? When was that? Death experiences – What and when was your first death experience? What was that like? What was your reaction? How did it make you feel? What was the nature of your relationship with this person? After the first death experience, have you encountered other death experiences? If so, what were they? What was the nature of your relationship with this person? Have you experienced the death of a loved one? If so, what was that like for you? How did you cope with the death of someone special? What was your reaction? How did you feel? Have you ever seen someone die? Would you like to tell me more about that? What was your reaction? How did you feel? Have you ever had a near death experience? Would you like to tell me more about that? Has it changed your view of life? If so, how? Have you ever had a pet die? What was your reaction? How did you feel? Death discussion – Do you ever talk about death? In what context have these conversations arisen (e.g. your own potential death, the potential death of the other party in the conversation or the actual or potential death of a third party etc. Who have you had these types of conversations with? Where were you when this particular conversation happened? What is the nature of their relationship with the person in question? What prompted these conversations? Who initiated them? Can you think of a time where you were unable to talk about death (or not at all)? What was different? Why was it different? How long ago did you start having these conversations? Has the nature of the conversations changed over time? Or does it depend on the context in which the conversation arises? If it was you who initiated the discussion around death and dying what was the response of the person/people to whom you were talking? Where were you when this particular conversation happened? What is the nature of their relationship with the person in question? 300 Has anyone ever talked to you about death? Who? Can you remember an example of what someone has said to you? Where were you when this particular conversation happened? What is the nature of their relationship with the person in question? To what extent do you feel comfortable about talking about death? Why? How did you become comfortable speaking about death? Has your comfortableness with the subject changed over time? If yes it has changed, what do you feel prompted this change? Who would you feel most comfortable to speak about death with? Why do you feel most comfortable speaking to them about death? Do you think it’s important for us to discuss death? Why? What do you think stops people from openly discussing death? Do you think openly speaking about death will help us to become more comfortable with it? If so, why? How do you think we can begin to feel more comfortable with death? Appendix 3 – Information Sheet (Initial Sample) Participant Information Sheet Title: A GROUNDED THEORY STUDY INTO DEATH AND DYING (working title) Before deciding to take part in this study it is important that you are fully informed of the nature of the study and what will be asked of you. Please read the following information sheet carefully to ensure that you have all the details of what is expected in terms of commitment, the procedures in place to ensure your anonymity and what will happen to your data. Feel free to ask if there is anything that is unclear or requires further explanation. About the study: 301 The aim of this research is to develop an understanding of how people make sense of death and dying. What do I have to do? I would like you to agree to have a discussion with me about issues around death and dying. I will ask you some questions focused on the subject of death. You have the right to refuse to answer any interview questions without the need for an explanation. After the interview, I may wish to contact you for a follow-up interview based on the topics you choose to discuss. This will be conducted by a second interview or via email, whichever suits you best. Are there any disadvantages to taking part? There should be no disadvantages to your participation. However, if you find the research more distressing than first anticipated, then you should not continue. Throughout the interview, you have the right to stop at any point and can refuse to answer any questions that make you uncomfortable without explanation. If you experience any psychological distress at any point throughout this research, please contact Cruse Bereavement care on 08088081677. What if I no longer wish to take part in the study? Your participation in the study is entirely voluntary. You are free to withdraw from the study up to two weeks after receiving your transcript without the need to provide a reason. If you no longer wish to take part in the study, please email me on kathryn.radley@hud.ac.uk. Will all my details be kept confidential? All data will be kept anonymous. Anything that could identify you will be removed or disguised with a pseudonym. When presenting the findings, all responses collected in the initial interview and any follow-up interviews will remain anonymous. It will be impossible to trace the interview data to any specific person. All data/recordings will be destroyed on completion of the research project. Will I be able to view my interview? I will send you a copy of your transcript via email. You are free to decide what information you wish to share. If you would like to change anything, would you let me know within two weeks of receiving it. If not, I’ll presume you do not want anything changed. Who will be able to view my data? The data you provide will only be accessible to me and my supervisors, Nadia Wager and Nigel King. No one else outside this research project will be able to view your data. What happens to the research data? I will use the research data, for a PhD research project for The University of Huddersfield. For a copy, please contact me. Data will be dealt with in line with the requirements of GDPR (General Data Protection Regulation). Under GDPR the Data Processor for this project is myself; the Data Controller is the University of Huddersfield. The legal basis for processing your data is that it is necessary for 302 the performance of a task carried out in the public interest. To find out more about your rights under GDPR please visit this site: https://www.hud.ac.uk/informationgovernance/dataprotection/your-rights-under-data-protection-legislation/ How can I find out more information? If you have any queries or questions, please contact me directly. Name: Kathryn Radley University of Huddersfield Email: kathryn.radley@hud.ac.uk Or you may contact my Main Supervisor, Dr Nadia Wager (n.m.wager@hud.ac.uk). May I take this opportunity to thank you for taking time to read this. Appendix 4 – Potential Interview Questions Interview questions will be based on past, present and future descriptions concerning; your thoughts and feelings relating to death. The interview questions are likely to change depending on the answers given. However, if there is anything you don’t want me to touch on just let me know and I’ll make sure I don’t mention these things in the interview. Starting question I’ll start by asking you what made you want to take part in this study? Potential Interview questions 303 Do you ever talk about death? In what context have these conversations arisen (e.g. your own potential death, the potential death of the other party in the conversation or the actual or potential death of a third party etc. What has prompted these conversations? Who initiated them? If it was you who initiated the discussion around death and dying what was the response of the person/people to whom you were talking? Has anyone ever talked to you about death? Who? Can you remember an example of what someone has said to you? To what extent do you feel comfortable about talking about death? Why? Has your comfortableness with the subject changed over time? If yes it has changed, what do you feel prompted this change? Who would you feel most comfortable to speak about death with? Why do you feel most comfortable speaking to them about death? Do you think it’s important for us to discuss death? Why? What and when was your first death experience? After the first death experience, have you encountered other death experiences? If so, what were they? Have you ever seen someone die? Would you like to tell me more about that? Have you ever thought about your own death? What circumstances prompt this and what were the key issues you were thinking about? How did it make you feel? Are you afraid of dying? If so, why? Do you ever think about the death of your loved ones? What is that like? 304 Appendix 5 – Participant Consent Form (Initial Sample) Participant Consent Form 305 • I understand that my participation is voluntary, and I am free to withdraw from the study within two weeks of the initial interview. • I understand that I can refuse to answer any questions without explanation. • I understand that I can withdraw the use of my data up to two weeks after the interview. In which case the recorded interview and transcript will be deleted. • I have read and understood the information sheet and had the purpose of the study explained to me. • I understand that my participation in this study involves talking about my experiences and perspectives of death and dying. • I consent to my interview being recorded via a password-protected mobile phone and that the recording will be transferred to a secure computer system as soon as possible after the interview and the recording will be deleted from the phone. • I understand the interview recording will be typed up as a transcript and the audio recording will be permanently deleted. • I understand that I will be sent the typed transcript of my interview which I will have the opportunity to amend or withdraw from the study, if I so wish. • I understand that all information will be treated confidentially, and my identity will remain anonymous. • I understand that extracts from my interview may be quoted, anonymously, in the research project. • I understand that my interview transcript will only be viewed in its entirety by the researcher, and her supervisors. 306 • I understand that my interview transcript in which all information will be kept anonymous will be retained until completion of the project. • I have been able to ask questions and they have been answered to my satisfaction. • I understand that I am free to contact the researcher if I have any questions or concerns about the project. • I agree to take part in this study. Please sign here if you feel you have had enough information about what is involved and would like to take part: --------------------------------- ---------------- Participant’s signature Date Name (block letters): _____________ --------------------------------- ---------------- Researcher’s signature Date Name (block letters): _____________ 307 Appendix 6 – Background Questionnaire Simple Background Questionnaire 1. Gender: _________ 2. Age: ______ 4. Religion: _____________ 5. Occupation: _____________ 6. Ethnicity: _____________ 308 Appendix 7 – Approved Ethics Application THE UNIVERSITY OF HUDDERSFIELD School of Human and Health Sciences – School Research Ethics Panel APPLICATION FORM Please complete and return via email to: Kirsty Thomson SREP Administrator: hhs_srep@hud.ac.uk Name of applicant: Kathryn Radley 309 Title of study: A grounded theory study into death and dying (Working title: I anticipate the actual title will come from the findings) Department: Human and Health Sciences Date sent: Please provide sufficient detail below for SREP to assess the ethical conduct of your research. You should consult the guidance on filling out this form and applying to SREP at http://www.hud.ac.uk/hhs/research/srep/. Researcher(s) details Kathryn Radley kathryn.radley@hud.ac.uk Supervisor(s) details Nadia Wager n.m.wager@hud.ac.uk Nigel King n.king@hud.ac.uk All documentation has been read by supervisor (where applicable) YES This proposal will not be considered unless the supervisor has submitted a report confirming that (s)he has read all documents and supports their submission to SREP 310 Aim / objectives The aim of this research is to explore people’s attitudes towards death, dying and bereavement to develop an understanding of how people make sense of death and dying. Research Objectives: • To critically analyse the interview data of approximately 30 participants on the topic of death and dying. • To explore barriers to thinking about death and dying, and how (if at all) such barriers are overcome. • To use constructivist grounded theory to develop a theory that explains the results. • To critically review the literature on death, dying and bereavement. 311 Brief overview of research methods A constructivist grounded theory methodology will be employed throughout this research project. Grounded theory seeks to produce a theory that is ‘grounded’ in the data by using systematic, yet flexible guidelines for collecting and analysing data (Charmaz, 2014). The initial sampling will be drawn from those who are already openly talking about death. An initial sample of approximately 10 participants will be recruited via a local death and dying festival (Pushing Up Daisies). This is a week-long festival that helps to promote death related discussion. Subsequent data collection will be determined by theoretical sampling. Theoretical sampling seeks to identify new participants based on the data analysis from the initial sample. After deriving a working hypothesis from the initial analysis, I will start theoretical sampling. The total number of participants cannot be known in advance as this is determined by theoretical saturation. Theoretical saturation is achieved when no further variations, concepts or categories appear to emerge from the data. If further theoretical sampling requires any particularly sensitive groups, I will consult with SREP. I will give the topic guide and information sheet to participants before the interview. This will give potential participants the chance to decide if the study is really something they wish to participate in and ensures that anyone who finds the subject matter distressing is free to decline to take part in the study. The research project will be explicitly explained via the information sheet. The information sheet will provide clear details of what is expected of a participant in terms of commitment, the procedures in place to ensure anonymity and what will happen to the data they have provided. This will be written in plain and simple language free from jargon. Should participants have any further questions, my contact details will be on the information sheet. Participants will also be provided with a verbal overview prior to the interview to ensure all details of the research have been understood. Participants will also be provided with a consent form that clearly outlines their right to withdraw from the study within two weeks of the initial interview, based on a full and comprehensive understanding of the purpose of the research. Semi-structured interviews will be conducted with all participants. Open-ended questions will be used to focus the discussion around the subject of death. Interviews will last approximately one hour and will be carried out in a private place of the participants’ choice, on a one-to-one basis. Interview questions will be modified for each interview, according to the purposes of the interview, as indicated by theoretical sampling. Participants may be asked to participate in a follow-up interview if the data analysis indicates it would be beneficial to the emerging theory. In follow up interviews, the interview guide will be modified in order to investigate the emerging themes from the first interview. Interviews will be recorded via a password protected mobile phone. The audio recordings will be downloaded onto my university K drive as quickly as possible and all recording will be deleted from the mobile device. All 312 audio recordings will be transcribed and stored securely on my university K drive. Brief overview of research methods . Participates will be debriefed at the end of the interview. They will be free to ask any questions they may have about the research project. This will reiterate the information provided at the start of the study and on the information sheet. Due to the study’s sensitive nature, if a participant finds the research more distressing than first anticipated they will not be obligated to continue. Transcripts will be given back to participants to look over and decide if they wish to remove anything they no longer wish to disclose. This will also serve as an active reminder of their right to withdraw without having to initiate it themselves. It will be made clear to participants that they can refuse to answer any questions that make them uncomfortable without providing a reason. Participants will also be provided with the relevant number to call if psychological distress should occur. Data will be analysed using a constructivist grounded theory approach employed by Charmaz (2014). Analysis will begin after the first interview. Data will be analysed and collected simultaneously until theoretical saturation is achieved. In the first stage of analysis, initial coding, transcripts will be manually coded line by line and double checked for consistency. The second stage of analysis, focused coding, will be used to identify the most significant codes from the initial coding process. The final stage of analysis, axial coding, will be used to relate categories to subcategories. Through constant comparative analysis and data collection, codes will be derived from the data to form the emerging theory. Project start date 07/01/2019 Project completion date 12/01/2022 Permissions for study None necessary 313 Access to participants Due to the nature of grounded theory, how participants will be recruited cannot be known in advance. This will depend on where theoretical sampling leads data collection. As stated above, the initial sample will consist of approximately 10 participants who have been recruited from a local festival on death and dying (Pushing Up Daisies). I envision that the full sample size is likely to be in the region of 30. However, this will depend on theoretical sampling. . Confidentiality Every effort will be made to ensure that the data provided by participants cannot be traced back to them. Participants will be informed of the parties who will or may have access to their data via the information sheet. Anonymity All identifying characteristics will be removed throughout the research process. When presenting the findings, all responses collected in the initial interview and any follow-up interviews will remain anonymous. Right to withdraw It will be made clear to participants that they have the right to withdraw from the research during interviews and to withdraw their data within two weeks of receiving their transcript, without the need to provide a reason. This will be communicated both verbally and via the information sheet. Data Storage All demographic and consent forms will be stored in a secure location. Interviews will be recorded via a mobile phone and audio data will be password protected. All audio recordings and digital copies of the transcripts will be stored securely on my university K drive. All tr audio recordings and any other personally identifiable data will be destroyed within ten years of completion of the research project in line with University data protection policy.. For the purposes of GDPR I will be the Data Processorn and the University of Huddersfield is the Data Controller. GDPR policy will be adhered to throughout. 314 Psychological support for participants The information sheet will provide details of local psychological support. Researcher safety / support (attach completed University Risk Analysis and Management form) Risk analysis attached Information sheet Attached Consent form Attached Letters / posters / flyers N/A Questionnaire / Interview guide Attached Debrief (if appropriate) Attached Dissemination of results Results will be presented via a PhD thesis; however, I expect to produce journal articles, conferences and other kinds of presentations and publications, including some geared towards a non- academic audience. Identify any potential conflicts of interest None 315 Does the research involve accessing data or visiting websites that could constitute a legal and/or reputational risk to yourself or the University if misconstrued? Please state Yes/No If Yes, please explain how you will minimise this risk No The next four questions in the grey boxes relate to Security Sensitive Information – please read the following guidance before completing these questions: http://www.universitiesuk.ac.uk/policy-and-analysis/reports/Documents/2012/oversight-of-security-sensitive-research-material.pdf Is the research commissioned by, or on behalf of the military or the intelligence services? Please state Yes/No If Yes, please outline the requirements from the funding body regarding the collection and storage of Security Sensitive Data No Is the research commissioned under an EU security call Please state Yes/No If Yes, please outline the requirements from the funding body regarding the collection and storage of Security Sensitive Data No 316 Does the research involve the acquisition of security clearances? Please state Yes/No If Yes, please outline how your data collection and storages complies with the requirements of these clearances No Does the research concern terrorist or extreme groups? Please state Yes/No If Yes, please complete a Security Sensitive Information Declaration Form No Does the research involve covert information gathering or active deception? Please state Yes/No No Does the research involve children under 18 or participants who may be unable to give fully informed consent? Please state Yes/No No Does the research involve prisoners or others in custodial care (e.g. young offenders)? Please state Yes/No No 317 Does the research involve significantly increased danger of physical or psychological harm or risk of significant discomfort for the researcher(s) and/or the participant(s), either from the research process or from the publication of findings? Please state Yes/No No The initial sample will be recruited from a festival that promotes death related discussion, therefore, potential participants will already be in a position where death is something that they wish to discuss. As a result, there is little risk that participants will experience psychological harm. As with all further samples, this group will have the chance to view the interview questions prior to the interview. For this reason, potential participants who find the subject matter distressing are free to decline to take part in the study. Thus, minimising the potential for psychological harm. Does the research involve risk of unplanned disclosure of information you would be obliged to act on? Please state Yes/No No Other issues No Where application is to be made to NHS Research Ethics Committee / External Agencies N/A Please supply copies of all relevant supporting documentation electronically. If this is not available electronically, please provide explanation and supply hard copy All documentation must be submitted to the SREP administrator. All proposals will be reviewed by two members of SREP. If you have any queries relating to the completion of this form or any other queries relating to SREP’s consideration of this proposal, please contact the SREP administrator (Kirsty Thomson) in the first instance – hhs_srep@hud.ac.uk ACTIVITY: Grounded Theory Research Project Name: Kathryn Radley LOCATION: Todmorden Date: Review Date: Hazard(s) Identified Details of Risk(s) People at Risk Risk management measures Other comments 318 Psychological distress Death and dying is a sensitive subject that could cause psychological distress Researcher • Debrief with someone after the interviews. My supervisor, Nadia Wager, lives local to the area where the interviews will be conducted. She has suggested that I can debrief with her. Psychological distress Death and dying is a sensitive subject that could cause psychological distress Participants • Interview guide and information sheet will be sent out prior to the interview. Therefore, participants will be informed of the questions before hand. • Transcripts will be given back to participants to look over and remove anything they no longer wish to disclose. • Participants can refuse to answer any questions that make them uncomfortable without providing a reason. • Participants will also be provided with the relevant number to call if psychological distress should occur. The initial sample will be recruited from a festival that promotes death related discussion, therefore, potential participants will already be in a position where death is something that they wish to discuss. Home interviews Personal safety Researcher • Always have a phone on me • Tell a responsible adult where and when I’m going • Agree with someone that if I don’t ring back by a certain time somebody will investigate it. If the interview takes place outside office hours, I will inform a responsible adult where I am going and will arrange to meet them after the interview. 319 Appendix 8 – Debrief (Initial Sample) Debrief The purpose of this study is to explore people’s attitudes towards death, dying and bereavement to develop an understanding of how people make sense of death and dying. In particular the barriers people may face when thinking about death and dying and how (if it all these) barriers are overcome. I will send you a copy of your transcript via email. You are free to decide what information you wish to share. If you would like to change anything, would you let me know within two weeks of receiving it. If not, I’ll presume you do not want anything changed. I may wish to contact you for a follow-up interview based on the topics you choose to discuss. This will be conducted by a second interview or via email, whichever suits you best. I will use the research data, for a PhD research project for The University of Huddersfield. For a copy, please contact me. Do you have any questions? If you think of anything you want to ask me, please feel free to contact me via email – kathryn.radley@hud.ac.uk. Thank you for taking the time to participate in this study. 320 Appendix 9 – Theoretical Sampling Recruitment Poster (Stage One) 321 Appendix 10 – Information Sheet (Theoretical Sampling - Stage One) EXPLORING THE PROCESS BY WHICH INDIVIDUALS COME TO ACTIVELY THINK AND OPENLY TALK ABOUT DEATH AND DYING (working title) Title: EXPLORING THE PROCESS BY WHICH INDIVIDUALS COME TO ACTIVELY THINK AND OPENLY TALK ABOUT DEATH AND DYING (working title) Before deciding to take part in this study it is important that you are fully informed of the nature of the study and what will be asked of you. Please read the following information sheet carefully to ensure that you have all the details of what is expected in terms of commitment, the procedures in place to ensure your anonymity and what will happen to your data. Feel free to ask if there is anything that is unclear or requires further explanation. About the study: The aim of this research is to develop an understanding of how people become open to thinking and talking about death and dying. What do I have to do? I would like you to provide me with a written account of a specific experience or turning point moment which prompted you to become or begin to become more open to thinking and talking about death and dying. What do you mean by experience or turning point moment? This can be an experience or specific moment/episode in your life that has led you to become or start to become open to thinking and talking about death and dying. For example, experiencing the death of others, experiences through work, near-death experiences, spiritual experiences, experiencing the possibility of your own potential death or the potential death of others. However, I would still like to hear from you if you can identify a specific aspect or period of your life that led to this change that is not included in the list above. A turning point moment can be a specific moment in your life or episode that endures over time. There is no restriction on the duration of this moment/episode. Your written account I would like you to provide the following: ● A detailed account of the specific experience or tuning point moment. ● A detailed account of how and why this experience or turning point moment prompted you to become or contributed to you becoming more open to thinking and talking about death and dying. After you have written your account, please email it to me at: Kathryn.Radley@hud.ac.uk. You are welcome to write as much as you like, however, between one and three pages would be useful. Follow-up questions I would then like to ask you some follow up questions based on your written account. Over a month I will send you follow-up questions based on the topics you have chosen to discuss. Follow up 322 questions will be sent to you via email, however, if you would prefer a one-to-one interview via Teams or the phone, this can also be arranged, whichever suits you best. Are there any disadvantages to taking part? There should be no disadvantages to your participation. However, if you find the research more distressing than first anticipated, then you should not continue. You have the right to refuse to answer any follow-up questions that make you uncomfortable without providing an explanation. If you experience any psychological distress at any point throughout this research, please contact Cruse Bereavement care on 08088081677. What if I no longer wish to take part in the study? Your participation in the study is entirely voluntary. You are free to withdraw from the study up to two weeks after emailing me your written account without the need to provide a reason. You are also free to decide what information you wish to share. If you would like to change anything, please let me know within two weeks of sending me your written account. If not, I’ll presume you do not want anything changed. Will all my details be kept confidential? All data will be kept anonymous. Anything that could identify you will be removed or disguised with a pseudonym. When presenting the findings, all responses collected from your written account and any follow-up questions will remain anonymous. Who will be able to view my data? The data you provide will only be accessible to me and my supervisors, Nadia Wager and Nigel King. No one else outside this research project will be able to view your data. How will the research be used? I will use the research data, for a PhD research project for The University of Huddersfield. For a copy, please contact me. I may also publish articles and give presentations based on this research, to academics, students and/or people involved in providing support and information about death and dying. What will happen to the research data? Data will be dealt with in line with the requirements of GDPR (General Data Protection Regulation). Under GDPR the Data Processor for this project is myself; the Data Controller is the University of Huddersfield. The legal basis for processing your data is that it is necessary for the performance of a task carried out in the public interest. To find out more about your rights under GDPR please visit this site: https://www.hud.ac.uk/informationgovernance/dataprotection/your-rights-under-data-protection-legistration/ How can I find out more information? If you have any queries or questions, please contact me directly. Name: Kathryn Radley University of Huddersfield Email: Kathryn.Radley@hud.ac.uk 323 Or you may contact my Main Supervisor, Dr Nadia Wager (n.m.wager@hud.ac.uk) May I take this opportunity to thank you for taking time to read this. 324 Appendix 11 – Theoretical Sampling - Consent Form EXPLORING THE PROCESS BY WHICH INDIVIDUALS COME TO ACTIVELY THINK AND OPENLY TALK ABOUT DEATH AND DYING (working title) Participant Consent Form • I understand that my participation is voluntary, and I am free to withdraw from the study within two weeks of sending my written account. • I understand that I can refuse to answer any follow-up questions without explanation. • I understand that I can withdraw the use of my data up to two weeks after the sending my written account. In which case the written account will be deleted. • I have read and understood the information sheet and had the purpose of the study explained to me. • I understand that my participation in this study involves talking about my experiences and perspectives of death and dying. • I consent to my written account being saved to a secure computer system. • I understand that all information will be treated confidentially, and my identity will remain anonymous. 325 • I understand that extracts from my written account may be quoted, anonymously, in the research project. • I understand that my written account will only be viewed in its entirety by the researcher, and her supervisors. • I understand that my written account, in which all information will be kept anonymous, will be retained until completion of the project. • I have been able to ask questions and they have been answered to my satisfaction. • I understand that I am free to contact the researcher if I have any questions or concerns about the project. • I agree to take part in this study. Please sign here if you feel you have had enough information about what is involved and would like to take part: --------------------------------- ---------------- Participant’s signature Date Name (block letters): _____________ --------------------------------- ---------------- Researcher’s signature 326 Date Name (block letters): _____________ 327 Appendix 12 – Theoretical Sampling (Stage One) Debrief Debrief The purpose of this study is to explore how people begin to actively think and openly talk about death and dying. In particular, I am looking at people’s individual experiences/turning point moments which led them to become or begin to become more open to thinking and talking about death and dying. After you have emailed your written account, if you would like to change anything, please let me know within two weeks of sending it. If not, I’ll presume you do not want anything changed. I may wish to contact you for some follow-up questions based on the topics you choose to discuss. Follow up questions will be sent to you via email, however, if you would prefer a one-to-one interview via Teams or the phone, this can also be arranged, whichever suits you best. I will use the research data, for a PhD research project for The University of Huddersfield. For a copy, please contact me. Do you have any questions? If you think of anything you want to ask me, please feel free to contact me via email – kathryn.radley@hud.ac.uk. Thank you for taking the time to participate in this study. 328 Appendix 13 – Ethical Revisions (Theoretical Sampling) THE UNIVERSITY OF HUDDERSFIELD School of Human and Health Sciences School Research Ethics and Integrity Committee (SREIC) PROPOSED REVISIONS TO PREVIOUSLY APPROVED APPLICATION (Attach separate sheets as necessary) Applicant Name: Kathryn Radley Title of previously approved study: A grounded theory study into death and dying (Working title: I anticipate the actual title will come from the findings) Ref: SREP/2019/063 Date approved: 14/09/2019 What change is being proposed? I am now on to the next stage of my grounded theory study (theoretical sampling). Therefore, I have modified my research method to reflect this new stage of data collection. What is the reason for this change? During the first stage of analysis, it became apparent that the majority of participants could identify a particular experience/turning point in their openness to thinking/talking about death and dying. For example, nine out of sixteen participants have had a particular experience that led them to actively think and openly talk about death and dying, however, these experiences are quite varied. It would therefore be beneficial to explore if there is a common experience of a turning point in people’s openness to thinking/talking about death and dying in order to further develop my potential theory. 329 Exploring this notion of a turning point moment, via theoretical sampling, is the next step in developing my grounded theory. Theoretical sampling is a pivotal part of conducting a grounded theory study. Theoretical sampling seeks to identify new participants based on the data analysis from the initial sample. In my original ethics application, I made it clear that due to the nature of grounded theory, how participants will be recruited cannot be known in advance. This will depend on where theoretical sampling leads data collection. The findings from the first stage of data collection and analysis suggest that people’s experiences/turning point moments are an important part of the process behind how people begin to actively think and openly talk about death and dying. Therefore, I will explore this notion of turning point further by examining written accounts of people’s experiences/turning point moments that have led to greater openness around thinking/talking about death and dying. Similarly, during the first stage of data collection and analysis, COVID-19 seemed to have an impact on the way people thought and talked about death and dying. Therefore, I decided to carry out a thematic analysis of these data, focusing on how the COVID-19 pandemic impacted on the way participants thought about issues of death and dying. The analysis of the COVID-19 related data revealed that the way people think and talk about death and dying on a personal level is responsive to the wider circumstances in which people find themselves. COVID-19 prompted people to start thinking and talking about death and dying, similarly, the analysis of the initial sample suggests that this could imply the same for more individual circumstances i.e., people’s individual experiences/death experiences. The initial analysis found that people’s individual death-related experiences can lead to more death awareness, as a result, this prompted individuals to begin to actively think and openly talk about death and dying. Therefore, by looking further at people’s experiences/turning point moments I can better understand and explain how this leads people to actively think and openly talk about death and dying. Each change we make will inevitably lead to amendments being made throughout the ethics documentation, which might also include the participant-facing documents. Please highlight where these changes have been made on your original approved documents. Sections affected by the proposed changes Please clearly identify below revisions made to previously approved SREIC application. Title of the project N/A 330 Researcher(s) details N/A Supervisor details N/A Aim / objectives N/A Research methods The findings from the first stage of data collection and analysis suggest that people’s experiences/turning point moments are an important part of the process behind how people begin to actively think and openly talk about death and dying. Therefore, I have modified my research method to reflect this new stage of data collection. Methodology Participants I will select three participants from the initial sample that could identify a specific experience/period of time that led them to change their openness to thinking and talking about death and dying. As the experiences in the initial sample varied, I will choose three participants who have had very different experiences to complete a written account of their turning point moment. This will act as a pilot study for the next stage of data collection. The three participants from the initial sample will be used to test the method for this next stage of data collection. This preliminary stage will be used to ensure that the notion of this experience/turning point moment is understood by participants. This will enable me to anticipate any problems with the research question before moving on to the next stage of data collection. Following this, I will look to analyse the data of 10 – 15 new participants. Participants will be recruited via convenience sampling. This will be achieved by advertising the study on social media (Facebook/Twitter). Inclusion criteria 331 ● Participants must feel they are able to actively think and openly talk about death and dying. ● Participants must be able to identify a specific aspect or period in their life which has led them to change their openness to thinking and talking about death and dying What counts as a turning point? ● An experience or turning point moment can be an experience or specific moment/episode in a participant’s life that has led them to become or start to become open to thinking and talking about death and dying. ● Turning points can be a specific moment in the participants life or a definable episode over a longer period of time. There will be no limitations on how long this moment/episode lasts. ● I will ask participants to provide a detailed written account of such a moment in order to explore this further. Procedure Sampling and Recruitment Ten to fifteen new participants will be recruited via social media (Facebook/Twitter). Participants will be recruited that are open to thinking and talking about death and dying and can identify a specific experience/turning point moment where their comfortableness started to change. Prior to recruiting the 10-15 new participants, three participants from the initial sample will be asked to also complete a written account of their turning point moment via email. This will act as a pilot study for the next stage of data collection. Data collection Those expressing an interest in the study will be provided with an information sheet outlining what the study is about, what is expected in terms of commitment, the procedures in place to ensure anonymity and 332 what will happen to their data. This will enable potential participants to make a fully informed decision about taking part in the research. Consent forms and background questionnaires will be sent to all participants prior to the interview. Participants will then be asked to send a written account of their experience/turning point moment via email. Written accounts will be used to explore these experiences/turning points in more detail. What should be included in the written account? ● A detailed account of the specific experience or turning point moment/episode. ● A detailed account of how and why this experience or turning point moment prompted them to become or contributed to them becoming more open to thinking and talking about death and dying. After preliminary analysis of the data, follow-up questions will be sent to all participants in order to explore specific aspects of personal experiences in more detail. Follow up questions will be sent via email, however, if a participant prefers to answer the follow-up questions via Zoom or Teams, this can also be arranged. Initially, I will send one set of follow-up questions to each participant. However, if it would be beneficial to the emerging theory, follow-up questions will be asked over a period of a month after completing the analysis. Participants will be encouraged to write as much as they like however I will suggest that participants write between one and three pages. Permissions for study N/A Access to participants N/A Confidentiality N/A Anonymity N/A 333 Right to withdraw N/A Data Storage N/A Psychological support for participants N/A Researcher safety / support (attach revised University Risk Analysis and Management form if there are changes to this) N/A Information sheet The information sheet has been modified to reflect new data collection. Consent form The participant consent form has been modified to reflect new data collection. Letters/ posters/ flyers N/A Questionnaire / interview guide Interview questions have been modified for the purpose of theoretical sampling. During the first stage of data collection and analysis, open-ended questions were used to focus the discussion around the subject of death. I am now on to the next stage of my grounded theory study, theoretical sampling. Theoretical sampling is determined by the initial data collection and analysis. The analysis from the initial sample suggests that people’s experiences/turning point moments are an important part of the process behind how people begin to actively think and openly talk about death and dying. Therefore, I will ask participants to provide a written account of this experience/turning point moment in order to explore this experience in more detail. After preliminary analysis of the data, follow-up questions will be sent to all participants in order to explore specific aspects of personal experiences in more detail. Debrief N/A Dissemination of results N/A 334 Potential conflicts of interest N/A Please confirm whether the following issues apply and whether or not these have changed since your original SREIC application. Does the research involve accessing data or visiting websites that could constitute a legal and/or reputational risk to yourself or the University if misconstrued? If so, please explain how you will minimise this risk N/A The next four questions relate to Security Sensitive Information – please read the following guidance before completing these questions: http://www.universitiesuk.ac.uk/policy-and-analysis/reports/Documents/2012/oversight-of-security-sensitive-research-material.pdf Is the research commissioned by, or on behalf of the military or the intelligence services? If so, please outline the requirements from the funding body regarding the collection and storage of Security Sensitive Data N/A Is the research commissioned under an EU security call If so, please outline the requirements from the funding body regarding the collection and storage of Security Sensitive Data N/A Does the research involve the acquisition of security clearances? If so, please outline how your data collection and storages N/A 335 complies with the requirements of these clearances Does the research concern terrorist or extreme groups? If so, please complete a Security Sensitive Information Declaration Form N/A Does the research involve covert information gathering or active deception? Please explain. N/A Does the research involve children under 18 or participants who may be unable to give fully informed consent? Please explain. N/A Does the research involve prisoners or others in custodial care (e.g. young offenders)? Please explain. N/A Does the research involve significantly increased danger of physical or psychological harm or risk of significant discomfort for the researcher(s) and/or the participant(s), either from the research process or from the publication of findings? Please explain. N/A Does the research involve risk of unplanned disclosure of information you would be obliged to act on? Please explain. N/A Other revisions Requirement for application to external body e.g. NHS REC N/A Please supply copies of all revised documentation electronically. If this is not available electronically, please provide explanation and supply hard copy 336 Signed: ___________________________________________________ (SREIC Applicant – electronic signature acceptable) Signed: ___________________________________________________ (Applicant’s Supervisor, if applicable – electronic signature acceptable) Date: ____________15th June 2021_________________________________________ SREIC_RevisedApp_previously approved_Rev3-Nov19 337 Appendix 14 – Theoretical Sampling Recruitment Poster (Stage Two) 338 Appendix 15 – Information Sheet (Theoretical Sampling – Stage Two) EXPLORING THE PROCESS BY WHICH INDIVIDUALS COME TO ACTIVELY THINK AND OPENLY TALK ABOUT DEATH AND DYING (working title) Title: EXPLORING THE PROCESS BY WHICH INDIVIDUALS COME TO ACTIVELY THINK AND OPENLY TALK ABOUT DEATH AND DYING (working title) Before deciding to take part in this study it is important that you are fully informed of its nature and what will be asked of you. Please read this information sheet carefully to ensure that you have all the details of what is expected in terms of commitment, the procedures in place to ensure your anonymity and what will happen to your data. Feel free to ask if there is anything that is unclear or requires further explanation. About the study: The aim of this research is to develop an understanding of how people become open to thinking and talking about death and dying. What do I have to do? I would like you to provide me with a written account of how you have explored your relationship with death and how this led you to become or begin to become more open to thinking and talking about death and dying. What do you mean by exploring my relationship with death? Exploring your relationship with death could include exploring fears, beliefs and views towards death and dying. For example: ● Thinking about your key issues associated with death and dying ● Reflecting on previous bereavements ● Addressing/thinking about your fears around death and dying ● Exploring your beliefs around death and dying etc. I would also like you to explain how you have explored your relationship with death, for example: ● By actively thinking about death-related issues ● Reading/learning about death and dying, ● Watching/listening to death-related TV shows/documentaries and podcasts ● Attending death cafes etc. However, I would still like to hear from you if you have explored your relationship with death in other ways that are not included in the list above. 339 I would also like you to explain how/why exploring your relationship with death had prompted you to become or contributed to you becoming more open to thinking and talking about death and dying. Your written account I would like you to provide the following: ● A detailed account of how you have explored your relationship with death. ● A detailed account of how/why exploring your relationship with death had prompted you to become or contributed to you becoming more open to thinking and talking about death and dying. After you have written your account, please email it to me at: Kathryn.Radley@hud.ac.uk. You are welcome to write as much as you like, however, between one and three pages would be useful. Follow-up questions I would then like to ask you some follow up questions based on your written account. Over a month I will send you follow-up questions based on the topics you have chosen to discuss. Follow up questions will be sent to you via email, however, if you would prefer a one-to-one interview via Teams or the phone, this can also be arranged, whatever suits you best. Are there any disadvantages to taking part? There should be no disadvantages to your participation. However, if you find the research more distressing than first anticipated, then you should not continue. You have the right to refuse to answer any follow-up questions that make you uncomfortable without providing an explanation. If you experience any psychological distress at any point throughout this research, please contact Cruse Bereavement care on 08088081677. What if I no longer wish to take part in the study? Your participation in the study is entirely voluntary. You are free to withdraw from the study up to two weeks after emailing me your written account without the need to provide a reason. You are also free to decide what information you wish to share. If you would like to change anything, please let me know within two weeks of sending me your written account. If not, I’ll presume you do not want anything changed. Will all my details be kept confidential? All data will be kept anonymous. Anything that could identify you will be removed or disguised with a pseudonym. When presenting the findings, all responses collected from your written account and any follow-up questions will remain anonymous. Who will be able to view my data? The data you provide will only be accessible to me and my supervisors, Nadia Wager and Nigel King. No one else outside this research project will be able to view your data. How will the research be used? I will use the data for a PhD research project for The University of Huddersfield. For a summary of the findings, please contact me. I may also publish articles and give presentations based on this 340 research, to academics, students and/or people involved in providing support and information about death and dying. What will happen to the research data? Data will be dealt with in line with the requirements of GDPR (General Data Protection Regulation). Under GDPR the Data Processor for this project is myself; the Data Controller is the University of Huddersfield. The legal basis for processing your data is that it is necessary for the performance of a task carried out in the public interest. To find out more about your rights under GDPR please visit this site: https://www.hud.ac.uk/informationgovernance/dataprotection/your-rights-under-data-protection-legistration/ How can I find out more information? If you have any queries or questions, please contact me directly. Name: Kathryn Radley University of Huddersfield Email: Kathryn.Radley@hud.ac.uk Or you may contact my Main Supervisor, Dr Nadia Wager (n.m.wager@hud.ac.uk) May I take this opportunity to thank you for taking time to read this. 341 Appendix 16 – Theoretical Sampling (Stage Two) Debrief Debrief The purpose of this study is to explore how people begin to actively think and openly talk about death and dying. In particular, I am looking at how exploring your relationship with death has led you to become or begin to become more open to thinking and talking about death and dying. After you have emailed your written account, if you would like to change anything, please let me know within two weeks of sending it. If not, I’ll presume you do not want anything changed. I may wish to contact you for some follow-up questions based on the topics you choose to discuss. Follow up questions will be sent to you via email, however, if you would prefer a one-to-one interview via Teams or the phone, this can also be arranged, whichever suits you best. I will use the research data, for a PhD research project for The University of Huddersfield. For a copy, please contact me. Do you have any questions? If you think of anything you want to ask me, please feel free to contact me via email – kathryn.radley@hud.ac.uk. Thank you for taking the time to participate in this study. 342 Appendix 17 – Transcript (Example) Participant 3 – 22nd January 2020 1 hour 21 minutes Interviewer: Erm, I’ll start by asking you what made you want to take part in this study? Participant: Erm, so, erm… well, you invited me after meeting me and … at the pushing up daisies, and I'm quite happy to be part… to participate. So, yeah, so I'm responding to your invitation. Interviewer: Erm, why did you decide to attend the pushing up daises event? I know that you actually did a workshop there… Participant: Because I have an interest in death and dying and. So, erm, when I knew about pushing up daisies… just because I have an idea of what's going on in the country and even the world in these areas. So… and then I ended up without, err, I never anticipated moving back, but my mum died, and I moved back to look after my elderly dad and and then I saw that the PUDs (Pushing Up Daisies) was on. So, I thought this is great. I get a chance to really experience this. So, I just went to as many events as I could and… also, one of my friends was putting in a proposal for something. So, I thought that's a nice idea. So, I have a film as one of my resources that I have called Voices of Grief and I just thought this is a great opportunity to show the film and just have a discussion afterwards. So, I just put in the proposal and err, yeah. Interviewer: Absolutely. Erm, you said that you, erm, work around… can you tell me a bit more about your work and how… Participant: So, so, basically, I trained as a doctor. First of all, in general practice and then in psychiatry and then I did some psychotherapy training. And erm, after 28 years, I… because I was doing psychotherapy training, I was changing as a person, and I think I was becoming more aligned with my true self, and so my path changed. So… but it, being a doctor, I came across death plenty. I was often coming into contact with people who had cancer and things, erm, such a lot that I actually couldn't quite believe my good luck that I was so healthy (laughs), when you’re meeting so much illness through your work. I was diagnosed with breast cancer and I… when I realised I had breast cancer, I… I didn't think why me, I thought okay so it's my turn now. It's almost like I was primed, erm, I had a different world view, err, to the average person, erm, and at that point, I was already training as an interfaith minister, and I had done quite a lot of this therapy, erm, group analysis and then union analysis. So, erm, so, when I had the cancer, erm… yeah, it's like, it's like… a lot of the ways that people talk about cancer didn't resonate with me. So, when they talked about you’ve got to fight it, or you’ve got to kick cancers ass or whatever… that, that just put me off completely, and I felt a bit isolated actually, and I found that the people I was meeting, whether it was Macmillan people or, erm, Maggie Centres, which we have in Scotland which is… Do you know about this? Maggie Centres? Maggie Centres (inaudible – maybe outreach) cancer care unit in Scotland. You have a Maggie Centre which covers the softer side of things. So, you might go and get your chemo or your radiotherapy but afterwards, you can go into the Maggie Centre and have a cup of tea and a chat and do mindfulness or join a writing group or do yoga or get a massage. So, it's kind of providing the more softer, erm, things. Err, so, even the Maggie Centre staff, I didn't feel they were on the same wavelength as me. I found it hard to find people that I could talk to about what I was experiencing. Erm, so, so, I was still getting… doing therapy at that time. So, I think my therapist was my main kind of person that I could talk to but, erm, yeah, so so my approach to… so it felt like I was 343 facing the possibility of my own death being sooner rather than later and, erm, but at the same time I… it's like, you know, in Buddhist practise you learn about accepting what is and resist… what you resist persists or or resistance causes more suffering, and I kind of… it just felt right to me to accept what was happening and include… and that included that I might die sooner rather than later. So, there was something in me… I made a… I actually wrote a healing ceremony for myself, but I didn't just pray for healing or whatever… I, I held everything in it and if I’m to die then I want to follow that path, grace, graciously, with with grace and and if I live, then, you know, I’m grateful for that as well. So, it… yeah. Erm, so, then I had, erm… after I'd finished training as an interfaith minister and I'd resigned as a doctor and I just wanted to give myself a bit of time to recover from all of this, and I sort of had an experience of being confronted with my own death at a very felt level, a visceral level, and it just all stemmed from thinking I'd got an infection and then something… it, it's really hard to explain but it's like there was a possibility I had a life-threatening illness, and I felt as if I had, but I kind of knew that I hadn't at the same time and as a part of my body was responding as if I was about to die and I was feeling the fear that one might feel if one knew one was about to die shortly and at the same time another part of me was saying stop being silly this is just psychosomatic (laughs). Erm, but it was, it was really difficult to be with these feelings of fear of death and it was really intense and then I, erm, I… just… again there was just a very few people I can talk to about this, but I talked to some friends about it and… and at some point, I just got to the point where I thought there's nothing I can do about this, it's… I just have to accept it. It's almost like I surrendered to it, whatever it was and then and then over the next two or three days it all just subsided, and I just went back to normal (laughs), but it was really weird that my… it's like my… instead of my fear of death being kind of over there, it was alive in me in a very visceral way and I… you know, and my body would shake and I felt terror at dying. So, something… it was a strange experience but, erm, at the same time I discovered something called threshold choir, erm, in, in America which is… it's just a group of nice women who sing to people who are dying, sometimes in hospices, sometimes in their houses, and it's like little lullabies, very gentle, and I'd heard about this, and I felt curious, and I got in touch with… I was in Vancouver at the time, I got in touch with somebody who led a choir in Vancouver, and I attended their choir gatherings, and I learned all about it, and I felt really inspired by it. So, I started a choir where I lived. And erm, so, erm, so, that was was the start of what you're asking about which is how do I work with death. And erm, and so, the choir, yeah, the choir… we learned some songs but really, they’re specially made, and they sound quite like lullabies that you might sing to a baby, and it does have that quality. It’s like, it's like you’re soothing. If you were soothing a baby with a really gentle song. It’s, it’s like that. And erm, it it seems to really… again, it may be that when people are in bed dying, they’re… it’s almost like they maybe have some of that feeling of being a baby and and the the soothing quality just seems to really help people. You can see them physically relax when you’re singing to them. And erm, people say things… it’s like, it’s almost like they stop struggling against death. The soothing of it soothes the struggle. So, you might… you know, enter the room of somebody who is really anxious, and they're thinking who are these people (laughs), what are they doing (inaudible). Erm, but, you know, by the end, you… they just usually drift off to sleep because they’re so relaxed and that seems to be really powerful and reassuring in a way. So, so, so, so, I was running this choir and meeting every week and, erm… so one of the things we did as well as learning song and learning to sing really gently and blending our voices and… we also wanted to talk, engage with the subject of death together because sometimes people have a fear, what if I'm at the bedside and I become overwhelmed with emotion? So, to try and, erm, to prepare ourselves, we, we would do things along the lines of a death cafe for example. Sitting together just talking about our thoughts and feelings about death, of ourselves and our loved ones. Erm, and occasionally we would watch a film together. There's a film by Terry Pratchett about, erm, assisted dying, the author, Terry Pratchett. So, we, we watched that together, and we talked 344 about that and things. So, we had… just every now and then we would do this sort of diving into some aspect of death together and talking about it, and I think that that was, erm, really helpful. Interviewer: Erm, do you ever talk about death? (laughs). Participant: (laughs) I do, erm, I do. I take every opportunity to talk about this, being aware that lots of people don't want to talk about death. erm… Interviewer: In what context have these conversations arisen? Participant: Erm… Interviewer: Your own potential death? the potential death of another party or… death in general? Participant: Mmm. Erm, well, I’ve thought about things like my own funeral and so I… I … let me think… I probably talked to my sons about that. They’re both adults. Erm, and I’ve made a description of what I… what I would like but also, I don't mind about lots of things. I just say this might work, if it works for you do this (laughs) I’m not highly prescriptive but, erm, yeah. So, erm, like for example when my mum died and like I was with my dad when we talked to the priest about the funeral and things and… erm, yeah. I guess I create opportunities by running for example a death café, erm, yeah, but it's coming up as well interestingly with what's happening with the climate and people waking up to the seriousness of the situation and and I think it's… I think that facing up to the reality of what's happening with the environment is… it includes how we feel about our own deaths. So, if people don’t want to talk about their own death and they can't, then that makes it hard for them to face up to the reality of what's happening with the climate because that might include death of ourselves or our loved ones, our children and so on. Erm, so, I think, so, I think I would say I I feel strongly that it's important to talk about death at every opportunity and for people to become more death literate (laughs), more emotionally intelligent and mature, but at the same time, I respect where people are at, and I don't force it on them because there's no… it wouldn’t be the right thing to do. Erm, but, yeah, so, I guess with, erm, so here we have quite an active extinction rebellion group and we’re meeting… I'm not, I'm not 100% in that group, probably about 10% (laughs). But recently we’ve been doing some groups about feelings, fears and grief and things and… have you heard of Joanna Macy and the work that reconnects? Interviewer: No. Participant: She's a Buddhist, American Buddhist, who's been a climate activist for decades, but also, she's very… she’s an academic who's an expert in systems theory, and she she realised that people who were trying to campaign for the environment were often getting burnt out and exhausted and disillusioned and despairing because it’s such an uphill struggle to get people to listen. So, she, she realised that they might have anger, fear, grief etc, but no place to express that, and if you don't express your feelings, it's probably harming you in some way. So, she's developed a whole programme of exercises for people to get together and talk about their… these feelings. Witness, witnessing one another and normalising it, and it's been running, as I say, for decades among the environmental movement and, erm, so, we've been doing some of that here, where we've had something called a truth mandala where you put a circle in the middle of the room and divide this circle into quadrant… four quadrants and in one you have a stick which represents anger and rage and in another one you have, erm, something like a bowl of water which represents grief, and another one you have something that represents, erm, despair and something that represents numbness or emptiness or longing perhaps, a sort of longing for something, and the people just sit together for maybe a couple of hours, and you just stand up and take hold of the stick and just talk 345 about your anger, and when you said enough you can put it down, and if you want to you can sit down and somebody else stands up or you can move on to something else and you're… but you’re not just talking about it, you're not just saying I'm angry, you can actually really express it, erm, without throwing anything around (laughs) without being violent. Erm, but yeah, so, helping people to embody it and the idea, and I think the way it works is it then energises people. So, instead of your rage eating into you and exhausting you, it’s, it’s… your rage is informing you, it’s helping you to go that extra mile to do what you think is the right thing. So, so, we've been using the work that reconnects. So, we're talking a lot about grief and fear of death and things. Erm, and we’re thinking of running a climate cafe along the lines of a death cafe for the general public, and also holding an event to talk about how to help children… how to help parents support their children with… with all of this because it's difficult to know how much to tell them or what to say. So, yeah, how did I get onto that? I can’t remember. Interviewer and participant: (Laughs). Participant: Carry on (laughs). Interviewer: Erm, so… so, what kind of… it’s very difficult because obviously, you do death work. What kind of people would you, erm, initiate conversations about death? Family, friends? Participant: Mmm. Interviewer: Or have other people initiated it with you? Participant: I, I quite often initiate it. Erm, and it might not be just with a particular person, but for example… erm, one of my friends was doing some of this… what I've just described, the work that reconnects. She was doing a day and I decided to go along to her day of the work that reconnects and then she said, “come and visit, come and stay with me for a few days”, which I did and then I said, “well, while I'm there maybe I could offer to do a session on death and dying” (laughs). And so, she put it out there among her circle and eight people came along. And erm, we did… had a whole afternoon talking about death and dying. We didn't do a death cafe as such, err, it was because most of the people that turned up were also interfaith ministers, and so, they had been thinking we'd like to do a death cafe, but they hadn't quite taken the first step. So, we talked about how they might do that and so on, but also, I brought a story, I brought a lovely story about an old woman moving towards her death, and we sang a couple of songs, and erm… a mourning song from Serbia Croatia and we… then we did a dance to that… a dance. Erm, so, yeah, yeah, so, yeah. I'm always looking for openings to, err… So, yeah, so, erm, I think I said to you the Unitarian minister asked me to go and do a service, and then he said he wanted… he knew I was interested in death and dying. So, he said, “would you talk about death and dying? so, I did, and… but then as we were talking, I said, “why don't I do a Death Cafe the day before as well then they know what I'm talking about? (laughs) They've got a direct experience of it and… so, yeah, it just always… looking for openings to… to talk about it and to create something that is… might fit with that. Interviewer: Is there anyone in particular that you would feel more comfortable speaking about death with or are you just open to it? Participant: Yeah, I think, yeah, I think, I think I would be open, and I might but put something very tentative and see how it lands and then respond according to that. Erm, yeah, but by having a public event, people will self-select so you’re not forcing something on people. Err, but when we did the one... there was… I think there was about 18 people there or something, that was great. Interviewer: Erm, has your comfortableness with death changed over time? 346 Participant: Yeah. Interviewer: Why do you think that is? Participant: Erm, yeah, so, yeah, I guess I have just grown and matured and become more able to to feel to what comes at me, yeah… erm, but also, yeah. Interviewer: Erm, you said that your comfortableness has changed over time, erm, what do you feel prompted this change? Participant: Erm, I think it is something about maturing and personal development. Erm, so, by doing… I think by doing my own therapy, when I was training as a therapist, that was a big part of it. Erm, also following a spiritual path. So, doing meditation and… yeah, as I say the Buddhist principles of accepting what is and not resisting things, just that as a practise… so, I think my… yeah, there's something about all of that somehow expands, I expand so that I can see the bigger picture, and I can see life and death in a context. So, it's not just death is something to be avoided at all costs, it's part of, it’s part of everything and and not only that, acceptance of one’s own death, it's the fruit of being more emotionally mature and more wise, but also it enriches your life. Yeah, so I don't, I don't feel I fear my own death, there is a sort of acceptance of it. Interviewer: So, when do you think that happened? What stage were you in your life? Participant: Hmm, yeah. Well, certainly that confrontation with cancer and the possibility of a more premature death was part of that, and the acc… somehow accepting that in some bizarre way (laughs)… I don't think I fear my own death. Let me think what else? Erm, I think those are the main things that have been part of the evolution and both of those are ongoing, I think, and there's also sort of, erm, models, err, you know, it… with young there… there’s a mythopoetic sort of thing to it. They love fairy tales and myths and and they… that they are telling truths about humanity, wise truths and they… you know, you… so they have these archetypes and things and you have goddesses that are the goddess of birth, the goddess of life and the goddess of death and lots of people would push that away, fear the goddess of death, but I think that it really helps you to to see things in a bigger context so that if you can accept life, the birth and the life, accept the death as well, it's just all part of the cycle, erm… Interviewer: Do you think that’s important? Participant: Why do I think it's important to accept death as a part of life? I think it's because it's the truth, and I think that avoiding and… avoiding contemplating one’s own death, I think you're missing out on something that's valuable. Erm, I think having that perspective of ones… you know, what, what if, what if my death… what if my life ended in next year? What would I want to do this year? So, it can give a… extra, erm, clarity or urgency to to live more freely and more joyfully and to to not put things off. Erm, yeah, so, I think I'm… I’m regarded by my friends as a very good example of somebody who (laughs) who doesn't hold back and I actually… leap, leap into things and, you know, if I get an inspiration to do something, I'll do it, just as a way of exploring and if it turns out that's not… it… that's fine, at least I checked it out. So, I do live life very, erm, enthusiastically (laughs) because I… you know, working as a doctor, you're supposed to work for 40 years to get your pension, of course, erm, people were incredulous that I would give that up, and whereas for me, the main thing was… the juice had just gone out of it, and and to have kept going with something that just… because you’re supposed to, why would I do that? and of course, there are things like security, pension, money etc, but if you see your life in the context of your finite, it’s finite and your health is finite and your fitness… erm, so, yeah, make the most of your life and yeah. There you go. 347 Interviewer and participant: (Laughs). Participant: Yeah, I think people are afraid of their own emotions. They’re afraid of crying. They’re afraid of fear (laughs) and and sometimes that might be because of something that’s happened. A trauma that's happened. Erm, so, for example, in childhood, if a death happened and it wasn't handled in a very… in a way that was supportive to the child’s understanding, then they might pick up from the adults that this isn't to be talked about, and it might be quite subconscious in them, that you mustn't talk about death because you'll upset people, or you'll get upset. So, I think that (sighs) I think it’s part of our culture. So, the way it developed with Victorians and don't talk about sex (laughs), don’t talk about death, and that's when undertakers came in. So, they undertook to do all that stuff that we don't want to look at, and the fact that they still dress in Victorian clothes is bizarre. Erm, so, to me, that is part of the expression of our culture's rejection of death and rejection of fear of emotion. Yeah. And also, the fact that people are proud of themselves if they don't cry at a funeral whereas in fact, erm, yeah (laughs) in many ways if one did cry freely at a funeral that might well help the grief process, it's appropriate in my view, it's… yeah. So, erm, yeah, so, there’s a big cultural taboo which is… feeds itself. Erm, death, both death and crying and grief and… having said that, I know quite a lot of people who are very comfortable with death, and they’ve, like me, they've taken… they've had a personal journey which has taken them to that point so that when someone’s loved one dies, they don't want the undertaker in the Victorian clothes with a big black car etc. They want to do it in a way that's more real, more personal. So, things like green burial sites and not doing it in a church and having a celebrant of some kind and… and also people… being most spontaneous at the funeral, less formality. Yeah, so, yeah, I can describe to you some of the funerals I've been to. Interviewer: Yeah. Participant: Erm, so, the first, I think the first one of this kind was somebody who died of dementia, well into her 80s and so… it’s almost like the person had long gone, but she was very much a loved person. And when she died, erm, an alternative kind of funeral person made the coffin, and he had a kind of trolley that was quite like a theatre trolley in a hospital, and so when she died, they kept her in the house. They didn't involve undertakers at all, and then when… they had to wait for some relatives to arrive from a distance. So, at some point they put the body in the coffin and closed it because of things like the smell, then they put the coffin in the garden and while they were waiting for the relatives to arrive people would just go and sit with the coffin and maybe write a little note or put a little drawing on it or something. And then on the day of the funeral, the man with the trolley came along and put the coffin on the trolley, and we all walked together. So, lots and lots of people, maybe 60 to 100 people, to the natural burial ground through the woods. So, it's within walking distance. She didn't need a hearse and everyone stood around the grave, and they all just… somebody was holding the space, erm, but it was very informal just talking about the person, what they meant to them, happy memories and things. Erm, a little bit of singing and then, lowered the coffin into the ground and if some people wanted to throw some soil in could do so, and then that came to a close and then everyone went to sit and have… eat and drink together and talk about the person more, more storyteller and so on. So, very honouring of the person, very rich, and very supportive to the family who are longing to hear all those happy memories about their loved ones. Interviewer: Sounds beautiful. Erm, what and when was your first death experience? Participant: Yeah. I think there's been lots and I think… I remember when I was probably about… small enough for my dad to pick me up, I've got a memory of my great granddad dying in hospital, and my dad must have gone to say goodbye, and he lifted me up, and I think he had caught (inaudible). I can remember going down and giving him a kiss and then coming back out. So, that's a 348 memory. Erm, and then I think when I was four, my dad’s sister died very suddenly of epilepsy, and I remember him… this is very acute, we we used to kneel in front of the sofa at night before bedtime and pray together. So, so, my dad was with the… we were all there on our knees and my dad told us that his sister, our aunt, had died, and and he put his head in his hands and cried, and we had never seen dad cry before. Yeah, so he was quite a strong man my… I don't think we went to the funeral. And yeah, so… just then different great grandparents, different grandparents and then I guess the most shocking was, err, let me think, my first year at University one of my classmates got drunk fell off a bridge and was killed. My… the man who was the best man at my wedding was killed in a rock-climbing accident, aged about 27. That was very very shocking. Erm, my brother died when he was 32 in very difficult circumstances. He died of aids and, erm, yeah, so… yeah that was very, yeah, that was so… I say a difficult death, but you know it so complicated like he was gay, my parents never accepted that. They were ashamed because they were good Catholics. They were ashamed that their son was gay and then he didn't tell them he had aids because because, erm, he… I don't know, it's a very difficult thing to do and… so, he, yeah, it was really complicated and of course, they were… yeah, so it wasn't just about my grief, it was about supporting them as well. So, it was incredibly… that was really difficult. Err, another one, a friend, a fellow doctor married to another fellow doctor friend, three children played, best friends with my children, the father ended his own life after having severe depression. Erm, and in some ways that seemed to… again, there’s something about suicide that makes it harder to be with and be with one another in it. Err, so, yeah plenty of experiences of death, yeah. And my parents both died in the last two years. That's why I moved here to look after my dad after my mum died. Interviewer: Do you think any of these deaths have changed your view on death? Participant: Erm, hmmm. I don’t know if it… I guess I’m more like… I think (laughs) err; I think my mum was the first one where I was actually with someone as they slipped away. With the amount of awareness that I now have, when as a doctor I must have been there when people died but, erm, yeah… I guess, yeah, so when my mum died, we… she developed a brain tumour and died within three months and the main thing was to support my dad. She went into palliative care just in the last few days. We didn't know the end would come so quickly but the nurse just phoned me up and said, “I think it's going to happen in the next day or two”. So, I flew down and got there about 10:00 o'clock the night before she died. I went to straight to the nursing home, and I spent about an hour with her. Erm, she was unconscious and just holding her hand and talking and praying with her and singing a little bit, the threshold choir thing coming in. And then I went back to my dad’s and then the two of us went in in the morning and… (sighs). A friend came from the threshold coir with me to the nursing home, and the two of us sang to my mum, and she took her last breath while we were singing to her. Now, when when the threshold choir sings, it's not usually at that moment of death because in some ways that’s such an intimate moment. It's usually six weeks before or two weeks before or two days before, but it's very unusual to be there at the moment of death. It was just amazing, but I think, I think that it meant… this whole thing about me engaging with death meant… I think I was much more able to be present with my mum, present to her, present to myself from what was going on in me and also very caring towards my dad and supporting him wherever he was in all of this. And I think when I was… started doing the threshold choir, that… I would reflect on that, I would think, this… you know, this feels like I will now be able to be more present, this becoming familiar with death. Yeah, it meant I was, I was able to… I didn’t panic. So, when when they said, when the nurse said, we think she's going to die in the next couple of days perhaps, and I made that decision just to go, I… my sister knew as well, and she panicked and she said, “I don't want to go, I'm frightened. I'm glad you're going, but I don't want to go”. So, she kind of missed out because she was frightened. Erm, and, yeah, whereas I, I brought a lot of equanimity to that even 349 though it was huge, there was something… yeah, I was able to just be, just be very present and respond to what was happening without panicking and without feeling frightened or overwhelmed. So, when mum, in fact as we were singing a tear rolled down her cheek, as she’s still unconscious, and then when it became clear she'd taken her last breath, I just said to my friend, I think you should go which she did, which just left me and my dad and then I just said to my dad, “I think she might have… I think she might have gone”, and then I invited him to come forward, and he held her hand and he kissed her and and then we said some prayers together. So, we were together with her for about 20 minutes before we called the nurse which I think is again, I think people panic when they think someone… they call the nurse and somehow, they missed the moment because they are busy thinking we must do something, whereas, in fact, you don't have to do anything. So, it's having that ability to not panic or not think there’s something I have to be doing. So, by, by being in that… yeah, I, we… yeah, it was lovely. And yeah, he did, he said things like I love you and goodbye, and then, erm, and then after a little… I think it might have been about 20 minutes, I said, “maybe you need a cup of tea, let's tell the nurses”. So, I went out and told the nurses. One of them took him and sat him down and we went out together, had a cup of tea and something to eat, and then the nurses said they were going to wash the body. So, I (sighs) said, I would like to wash the body with you, which I did. Which was… which was interesting because I've got a friend whose… her path in life is to help people to be with bodies after they've died and to keep them at home if people want to. She helps people to know the ins and outs of how to do that. Is it legal? Do you have to tell anybody? You know… she’s a Macmillan nurse and she’s seen people, again, panicking. The persons died, call the undertaker, it's three in the morning, call the undertaker. You know, whereas you could just sit with them. You don't need to do anything. I mean a doctor just has to certify that they're dead, but they often don't come for 12 hours or something because they’re so busy. And, erm, she's, she's… so she’s started something called, erm, pushing up… either the daisies or daisies. It's, it's the different one to the PUDS thing. It might be pushing up the daisies. Her… so, she started a charity where she is educating people to bring death back into the home. So, even if somebody’s died in a hospital, you can ask an undertaker to bring the body to your home and pop it in the bed for a while until the funeral, and you… yeah, she tells you, you know, anything you have to do, which isn't very much, but she's made a series of films about people who've done it, and they talk about how after, you know, after… the first-day mum died, I would go and make myself a cup of tea and I would start to make two cups of tea, and then I would think no, she's died, she doesn't need tea, and and then after a couple of days, that stopped. It’s almost like that part of them that still thinks there alive just seemed to fade away, and it was part of her integrating the reality that she has, in fact, died, was having her there in the house, and and… it's, it's really interesting. I think it's, I think it's really important because quite often people, after someone's died, there still searching for them, and this part of them doesn't, is… yeah. So, I think this this could be a way of helping people with their processing of a death, is to be more involved, erm, and not panicking (laughs). Yeah. Interviewer: Erm, have you ever had a near-death experience? Participant: I don’t… I haven’t, but it is something that I have taken an interest in. Where I used to live has conferences regularly. And one of them was about a near-death experience. So, I just kind of got drawn into that, and they had about five days when several speakers came and talked about their experiences and it really rang true, what I was hearing rang true to me, and it changed my worldview. Interviewer: What was it that changed your worldview? Participant: Erm, I’ve put some resources on the table to show you and there are some near-death experience books there. So, one of them was a man called Eben Alexander, and he was a 350 neurosurgeon. So, he was a typical sceptic, you know, if people have a near-death experience, it must be because of the oxygen to the brain blady blady blah… toxaemia blah blah blah. He wouldn't have believed in near-death experiences until he had one, and and then when he had one, he was totally passionate about telling everybody about it (laughs). Erm, and erm, so, basically, he was one of the speakers. So, he just talked about what it was like, and he's written this beautiful book called Proof of Heaven (laughs). Being a scientist, he’s into proof (laughs). And, erm, it's an amazing story. It's so easy to read. It, it's so lovely because he intertwines it with other events in his life whereby… he was adopted, and he could never trace his birth family, but while he was dead, he met his birth sister who had died and then when he came back to life, he managed to find his birth family, and he discovered that he had a sister who had died. Erm, that’s just one of the other strands to the story, but his descriptions of… so, so, he, he, so basically had, erm, a serious… it was either encephalitis or meningitis or something. It was a severe infection of the brain. So, much that the brain scans were showing that his brain had kind of… was just like dissolving, and they said that even if he survives, he will be brain dead. Erm, and so his experience was he went into this light, and he had this… what do they call it, an inventory of your life where you see everything that happened in your life and then and then he went into this place, erm, it was like being in… like being an earthworm in earth. It was kind of all brown and nothing was happening, and he was stuck, and then he would pop into another world and and then he would describe these, and they were just incredibly beautiful. Erm, and his descriptions of heaven are so beautiful that for a while I kept the book by the side of my bed, and I would read them over and over again. It was just so beautiful. So, I think, I think before that I had thought well when I die, I just go back into the the the universe, you know? I didn't particularly believe in reincarnation; this bit that’s me goes somewhere and then it comes down again as another person. I mean… that just didn't ring true for me. So, yeah, but I, yeah, so, I guess I thought, well, there is this universal consciousness, my little bit of consciousness may be just goes back into that, but this was saying something different. Erm, and I heard it from several different people and and it rang true, as I say, it rang true. I didn't feel like I was being conned by anybody. Erm, I could have taken it or left it, erm, but yeah. So, I think the way it changed my view of death, erm, well, I think it means that for example, now that my parents have died, I think that they are not the people they were when they were alive. So, any limitations that they had as a human being they don't have anymore. So, whereas I might think, oh, my dad, might not, might not approve of me doing this. I think, no, he’ll definitely approve (laughs) because he's got a bigger worldview now (laughs). Erm, so, err, yeah, yeah, so, I think, erm, and I think the message that the people… have you ever heard… read books on near-death experiences like Anita Moorjani is quite famous? There's somebody called Anita Moorjani who had cancer and then she had it widespread, and she was dying and for some reason she got better against all the kind of medical expectations, but she's had a near-death experience, and I think they all ultimately are saying the same thing which is really simple which is it's all love (laughs), love more, it’s all you need to do in life, is love more. Erm, you don't have to worry about it. So, it's… yeah, it's interesting. Yeah. Interviewer: Erm, you’ve already sort of answered this, but have you ever thought about your own death? Participant: Yes. Interviewer: What circumstances prompted this? What were the key issues that you were thinking about? Participant: Well, I think... I don't want a medicalised death, and in a way, I don't want to outlive my life (laughs). I don't want to keep dragging on being more and more incapacitated and… what I love doing most, what is most nourishing to me and meaningful is actually being outside. So, I love being 351 in nature. So, if I was cooped up in an old people’s home, even if I was still alive, something in me would be dying. So, in some ways, I'd rather take risks with my death. So, yeah, I’d rather… it's interesting because it sounds like suicide, but it wouldn't be suicide, but if I knew I was dying, I'd rather wander into the woods and die with the owls hooting (laughs) of hypothermia (laughs) than dying in a nursing home with people faffing around (laughs) but, you know, to some people that might sound like suicide, oh, you wander off into the woods to kill yourself, and that hurts people. So, I've said that to my… at least my oldest son, when I die I might, I might just wander into the woods. So, don't worry about me. It’s fine. It’s fine. Because somebody might think, oh, no, she went for a walk and got lost, it's terrible. Whereas I want to reassure them that whatever happens, it’s fine, but whether… that might not be possible to reassure them. Erm, yeah, so, I guess, yeah, I guess learning more about death and how (sighs) it's not fun, people say old age isn't for sissies (laughs). It's incredibly tough, actually, quite often, and some people are very very gracious with it and some people are miserable with it. Yeah, so, I guess I can't pre-empt it. I've got a friend who's 96 who lives just across the road (laughs) happy as Larry, he’s talking about turning 100. So, he's, yeah… who knows, who knows what the future holds, but, yeah, yeah. Interviewer: Erm, are you afraid of dying? Participant: No.In fact, if I … I don't know what would happen if… again, tomorrow I was told that I had three months to live, or or if I was in a car crash. I might feel fear because… yeah, so, yeah, there are lots of different levels of fear, isn't there? So, yeah, so, sometimes I… when I'm talking about death, I talk about our, erm, what’s it called? Our… (laughs) something about our life, our fear of death protects us. It stops doing stupid things, and it's very visceral. So, if I go to the edge of a cliff, I'll start to feel something and that'll make me withdraw from the dangerous edge of the cliff. Yeah, so, that might, that might still be there, that visceral fear of death, and I respect that, but I think on a cognitive level and an emotional level, I think there’s… just an acceptance of this natural cycle of life. I'm actually 57. Erm, so, I've had very good innings and… yeah, there's just something accepting about whatever the future holds. Erm, I don't feel desperate to go on and on and on. Yeah, but if yeah, who knows. Yeah, I'm just open to what happens, but I don't, I don't think I… on a cognitive and emotional level, I don't think I fear death. Interviewer: Yeah. Erm, do you think that openly speaking love death will help us to become more comfortable with it? Participant: (Laughs) Yes, yes, I do, which is why I do death cafes. Interviewer: Why do you think it would help? Participant: Err, I think it, err, I think that there's a taboo, and my my understanding of taboo is we have an unspoken agreement not to talk about something. So, if we start talking about it, we will break the taboo, and this taboo is powerful and it's… so, it's almost like it… it's like the first step… as long as the taboo is there, everybody is going to be avoiding it. Yeah, erm, so, I think, I think once the taboo is gone and people… if people aren't afraid of their emotions and allow themselves to cry, if that's what happens as their talking about it, I think that it will be a really positive enriching experience, and I think it will mean that things are smoother or more real or… yeah. So, for example, at the moment, if you don't talk about it, then when someone dies, and suddenly you have to make these decisions; what do I do? did they want to be cremated or buried? did they want a church or did they not? etc. and it… you're in such a shock, it's really hard to make those decisions. Erm, so, it puts people under a lot a lot of pressure. So, I think by talking about it, it's got many benefits, but one of them is is it helps those who are planning the funeral in a good way. Not just that they know 352 the answers to the questions, but instead… it's really hard when people are in the shock of a death and having to make decisions, and I think that's part of the reason why people stick with the most conventional funerals possible is because the undertaker hands it to you on a plate and you say yes. Erm, and and that, and then you might go to a funeral which is completely different where they had something much more personal and meaningful, and you think, oh, I wish, I wish we'd done that for my dad and people feel regret. So, I think that that, erm, a funeral that is more personal and meaningful is really a real gift to everybody. I think it's a gift to the deceased person in that it hon… really honours them and who they were and gives everyone a chance to honour them, and it's comforting to the relatives because everybody’s honouring them and yeah… and if you can be… if you can allow yourself to, you know, shed some tears at the funeral, I think it’s, I think that’s the potential of a funeral is for it to be… if there was no funeral and some people try not to have one (laughs) well, they’re, they’re just depriving everybody or something. It's, erm, because… I've heard a saying, a ritual is what you do when you don't know what to do, and and if somebody dies, everyone just doesn't know what to do (inaudible), and a funeral allows you to do something concrete. It might, you know, it might take a couple of hours or it might take a whole day, but there's something about the doing of it that all… it embodies, it brings into a reality what's actually happened, and I think that people who say I don't want a funeral and stuff, just send my body to the cremator, they’re depriving those who are left behind of a chance to put what is chaos (inaudible). It can be a step along the way, a really valuable step along the way when obviously there’s a huge amount that happens after that, and and but also I find that… when my brother died, my parents bought a grave with three for them (inaudible) and then… so, when my brother died, the grave was a really valuable focus for my grief and even though I didn't live nearby, every time I visited I would just go and different things happened every time. Sometimes it was sadness, sometimes it was nothing, sometimes it was rage, you bastard (laughs). And it just gave me a focus to to let all these things that just needed to come out, come out, and err, yeah. So, I think again, if one isn’t death literate, if… you might think these things don't matter. Err, you might not even know what you're missing. Interviewer: What do you mean by death literate? Participant: Erm, I mean, erm, so, it means being familiar with death, err, being able to engage with it, erm, in the same way, you could say if somebody's emotionally illiterate they don't have the words to express what they are feeling, so, it all gets trapped. Whereas somebody who's emotionally literate, by being able to speak about what they're feeling somehow that allows things to move through. So, I think it's…. that’s what I’m meaning. I think the two are obviously very closely linked. Erm… Interviewer: Erm, how do you think we can begin to feel more comfortable with death? Participant: Erm, well, I think that one of the ways in which our society transforms itself and has done in amazingly good ways is through things like television programmes like EastEnders and The Archers and and women's magazines and lifestyle sections of newspapers. Erm, so, that's… I think that's part of it. Erm, I think, I think as, I think as a culture we do manage to bring things… since compared to say like the 1950s, we’ve brought so many things out of the closet, out of the taboos. Erm, and it's all been to the enrichment of individuals and and all of us. So, that's certainly one one way. Erm, and I guess, yeah, things like… yeah, doing doing things real… well, doing a funeral really well, awakens people to the fact that, wow, I never knew you could do that, I never knew it could be like that. Erm, things like death café. Erm, I think every time there is a death in a community there's a chance… an opportunity there. So, like with children, erm, that could be a nice way in, is how do we talk to our children about the fact that somebody important to them has died, and perhaps… yeah, it’s interesting. So, having resources to offer to support people, to support their children, I 353 think is a really nice thing to do. I mean, obviously, the pushing up daisy’s thing is great and the Death Awareness Week, erm, and so on. Erm, where I used to live, a solicitor (laughs), a solicitor used to go to different group meet… I think it was a collaboration between a solicitor and the health board, where they were going… they might put on an event for seniors, and they might have an undertaker and da da da da… but that was kind of like a way in. It wasn't primarily about… but they were trying to get people to talk about death and dying and one of the important things is power of attorney health and welfare, welfare... a welfare power of attorney and financial power of attorney, and and the the payoff for the health board is if someone hasn't got that, a person can be delayed in hospital for three months while they're waiting for that to be processed. So, it blocks a bed and it's not the right thing for the person who's in the bed to be blocking it (laughs). So, erm, err, so, yeah, so, then the health board it will ease, really, they've got… there on a mission, you know, that they are organising events and getting seniors to turn up, and yeah, encouraging them to think. You know, fill in this, here's a little form, write down what you want when you die, you know, have you made your will, have you put your power of attorney in place? This is how to do it, here are the resources. Erm, so, so, that's a nice way in because it's quite intellectual some people will allow themselves, oh, yes, that's for the benefit of my family, I will write a will, but soon as you start writing a will, you're engaging with the subject of death. So, I think it's a brilliant way into this, is to start with the practical. It’s not so emotional, but once they’ve started those steps, they may be a little bit more open for something else. Erm, so, yeah, I think there are already lots happening and, erm, when it’s all. They all complement each other. Yeah. 354 Appendix 18 – Initial Coding (Example) 355 356 Appendix 19 - First Memo Recoded about COVID-19 First COVID-19 memo – April 29th 2020 Coronavirus – participants interviewed after the start of coronavirus have stated that they have gone from thinking about death fleetingly to thinking about it several times a day. This may be a factor that effects this study; therefore, I need to keep note of all participants post and pre- COVID-19. 357 Appendix 20 – Mind Map (Example) Gender: Female Age: 55 Religion: Omnist Occupation. Previously a nurse Ethnicity: White British Death has been quite prominent in her life. (Lost lots of people) Volunteered in the hospice as a teenager/ went on to work as a nurse in the hospice. How did they become comfortable thinking and talking about death? She has come to accept death because of her spiritual beliefs/ experiences. Her spiritual experiences inform her spiritual beliefs. As a result, she does not fear death, “it’s just a natural part of life. My soul/spirit will continue”. It is a combination of her spiritual beliefs/experiences, not fearing/accepting death, and recognising the importance of death conversations that has enabled her to comfortably think and talk about death and dying. Background information Experiencing death Her first experience of death was her grandfather when she was 5/6 (they were not close) –this was the first time that she realised the permanence of death (realising the permanence of death). Her mother was crying, but she did not understand why (feeling confused) Her first real/most impactful death experience was her grandmother (she was 15)– (extremely close relationship– “she was like my soulmate”). She saw her deteriorating (seeing her grandmother deteriorate). The day that she died, she was not allowed to go into the room (being excluded from her grandmother’s death). This really “pissed her off” (feeling angry about being excluded). She was not allowed to attend the funeral (being excluded from her grandmother’s funeral). She feels as though she was denied the opportunity to say goodbye to her grandmother (being denied the opportunity to say goodbye) – was really angry about this (feeling angry). Grandfather’s death – He died whilst she was working at the hospice. She washed him and laid him out (preparing her grandfather’s body) (feels like she could not have done this for her mother or father). Father’s death – her father’s death was difficult for her because they had only just reconnected (reconnecting with her father). They became close towards the end of his life, and she wishes she could have had that throughout her whole life. Experiencing spiritual phenomena Loved ones have appeared to her after death (experiencing an apparition). She wanted one last hug from father (wanting to see her father again). Her father came to her in a dream and gave her a hug (this happened a few months after his death) – she describes this experience as “feeling so real”. She believes that he was really there (justifying/defending her experience). Her grandmother has also appeared to her in a dream (she was 14). She went down a white tunnel (heard indescribable music) (describing the experience), her grandmother was at the end of the tunnel (seeing her grandmother again). She then physically fell out of the bed and landed on the floor. She has spoken to a medium about this experience (speaking to a medium)– the medium told her that her nan wanted her to be with her, however, she does not believe this (disbelieving the medium). She believes that her nan was telling her that “death is fine, death is okay, it’s beautiful” (comforting spiritual experience). She contemplated taking her own life (contemplating suicide)– She was about to cut her wrists when she saw someone standing next to her (seeing an apparition). The appreciation told her, “you can ask for help” (hearing an apparition), this prompted her to go and ask for help (seeking help). This experience is another reason why she believes in life after death (believing in an afterlife). Explaining her experiences Later in life she started to read books on out-of-body/near-death experiences (reading about out-of-body/near-death experiences). Reading about these experiences made her realise that this is what she has experienced – these experiences have changed her view on death (changing views). She now believes that death “is okay, it’s fine, it will be okay” (accepting death). Sensing loved ones after death Sensing her father - The Christmas after her father died, she “got such a sense of him being there” (sensing loved ones after death). She believes that he was trying to tell her that “life doesn’t need to be a struggle” (receiving messages after death). She also felt his presence the Christmas after (sensing loved ones after death). She gets the sense that he is around her (sensing loved ones after death). Some people have a place where they can remember the deceased, but for her, he is in the garden (he loved birdwatching), when a robin comes into the garden as far as she is concerned, that is her father. Sensing her grandmother - She can feel her grandmother around her quite often. It was not long after her death that she felt like she was with her (sensing loved ones after death). Holding strong spiritual beliefs Her spiritual believes are far more than comforting, they are a deep-seated belief that she holds. Over the years, her thoughts about everything, including death, have been grounded in spirituality. Believing in an afterlife “There’s so much energy in our bodies, it does not just disappear. That energy goes back to be with something else (God/ universal consciousness/ soul) – it is like getting out of a car (the cars broken down/death) The soul/spirit is then free. We are all on a spiritual path. Death is not the end, only the end of our physical bodies”. Finding comfort in her beliefs Does not believe in a specific religion (believes in spirituality) (believing in spirituality). This brings her comfort when thinking about death – she really believes this happens after death but suggests that if it is not true, at least she lived her life in hope, rather than believing that death is the end. Believing in different aspects of death Believes that there are practical aspects / spiritual aspects/ emotional aspects of death. Participant 10 358 Accepting death Has an “acceptance of death”. – “It’s part of life. It’s nothing weird”. Thinking about the death of others Thinks about death every day, but not in a “morbid/scared way”. She sometimes thinks about her son dying (as he drives for a living) (thinking about her son dying). Thinks about the death of her mother (she is 86) (thinking about her mother dying). She was an abusive mother and does not really feel sad about the thought of her dying. Remembering the deceased Thinks about deceased loved ones when something reminds her of them. Thinking about her own death (key issues) She would end her life if she had an incurable illness where she was going to get progressively worse and lose her dignity (losing her dignity/ thinking about euthanasia). Does not want to die before her children turn 18 – she does not know where they would end up and this worries her (worrying about her children). Thinks about her own death and what she wants to do before she dies (bucket list) (Thinking about what she wants to achieve before she dies). Fears around death Fears that she will die when her children are too young to be able to cope with her death. (fearing how her children will cope) –Her ex-partner’s mother and father died when he was in his 20s (21/late 20s). He really struggled to come to terms with both deaths. So, she wants her children to feel as though when she dies, “they are in a place where they can have the support they need to manage her death”. This is her only fear around death. Fearing death She does not fear death – “It’s just part of life” (accepting death). Her soul/spirit will continue (believing in an afterlife). Becoming comfortable with death Speaking about death will help us to be more comfortable with it. The more we talk about our fears the less fearful we become. If we do not talk about our fears, it is this unknown, we keep it down, we keep it hidden (avoiding death conversations). But as soon as you start to explore/uncover the topic there is less to be scared of. (lessening/reducing our fear of death) Teaching death in schools We need to talk about death in schools – “if we talk about our feelings openly, then the difficult feelings that come with death won’t feel so difficult”. (she recommends that death education should be taught as part of PSHE) – Becoming more comfortable with death. Talking about death Feels open to talking about death (feeling open to death conversations). Feels comfortable speaking to anyone about death (feeling comfortable having death conversations) – because her spiritual beliefs are so strong, she does not see death as a problem (finding comfort in her beliefs). Her friends will talk about death “very delicately”, and she will just go in and get straight to the point – “why pussyfoot around stuff when there’s an issue to be talked about”. If people are avoiding the subject she will just come out and say it. Preparing practically for death She has talked to her mother about death (her mother has told her where the money is in the house in case she dies) (talking about preparing practically for death). She has talked to her children about death (what would happen if she died/ what she wants when she dies) (talking about preparing practically for death). She has talked about euthanasia with her friends. They talk openly about what they want/ how they would go about implementing that (talking about preparing practically for death) – Once her daughter turns 18, she is getting a living will (creating a living will) because she does not want anybody to keep her alive for longer than she needs to be. “It’s not because I want to die, I just don’t want to live a life with no dignity” (wanting to die with dignity). Initiating conversations around death She initiates death conversations with her children. Her mother initiates death conversations with her. Avoiding death conversations Her mother would not talk to her about her grandmother’s death (avoiding death conversations) (she felt really “hacked off”) (feeling angry). She was very emotional, however, she felt as though she was not allowed to express her emotions (supressing her emotions). She had a “desire” to talk about the death (wanting to talk about death), but she didn’t have anyone to talk to (having nobody to talk to). Her ex-Sister-in-law was dying - she told her ex-boyfriend that “he needed to talk to her and find out what she wants when she dies” (initiating death conversations). However, he didn’t want to have that conversation as he believed it was too soon (avoiding death conversations). She told him that it was really important for him to find out what she wants (recognising the importance of death conversations). She brought it up knowing that it had to be talked about, but in the end, he never had that conversation, and he didn’t know what she wanted. “No one knew what she wanted because no one initiated that conversation with her” (recognising the importance of death conversations). She believes that he was unable to talk to his sister because of his previous experiences of death (mother and father). He was young when his parents died and was unable to cope/deal with their deaths. Participant 10 359 Participant 10 Preventing death conversations Death is now so clinical/medicalised – it has been taken away from the home/ our everyday lives (death used to be a part of life – looking after elderly relatives/ bodies laid out in a coffin in the living room) (medicalising death). We lack acceptance that death happens (denying death)– her brother’s mother-in-law had a stroke (she is 83) – he couldn’t understand why “because she is really healthy”. Participants says, “but she’s 83, she’s not young, things start packing up”. However, he could not “get his head around it”. She then goes on to explain that “you can do everything right, but we don’t go on forever” (accepting death). The reality of death is lacking (denying death). She suggests that people avoid thinking/talking about death because they are scared. “They’re scared, death is scary”. (fearing death) She suggests that people avoid death-related conversations because of the fear of a prolonged death/ drawn out death/ painful death/ COVID death (fearing the process of dying). These fears stop people from thinking/talking about death (preventing death conversations). When it is our own death, we think about the pain that we are going to go through, this stops people from thinking/talking about death (fearing a painful death), but when it is other people’s death, we think about how this is going to impact us. What happens if they die? / what am I going to do? (thinking about the death of others). 360 Appendix 21 – Memo Recoded on the Most Frequent and Significant Codes Developed from Participant Ones Data Example of an analytic memo written in August 2020 Fearing death (This participant was particularly afraid of death in his 20s -nothingness/unaccomplished life/missing family members)/Experiencing death (after the death of his parents, his fear of death “lessened” – he thought “I’ll only go where they’ve gone”. “I’ll go next, that’s the natural progression)/Turning to the spiritualist church (Turning to the spiritualist church helped him cope with the death of his mother/father)/Comforting spiritual experiences (this participant has received signs/messages from his loved ones. These experiences reinforce his belief in a spiritual world. This lessens his fear of death and brings him comfort because he believes that he will go on to something else)/ Learning about his father’s near-death experience (This made the participant less afraid because he thought that if his father has seen that (something after death) then he has no reason to be sceptical about it)/Comforting spiritual beliefs (His spiritual experiences/beliefs have really helped him with his fear of death (believes there’s something after death/he’ll only go where they’ve gone (his parents)) – these experiences/beliefs make him less frightened of death (he finds it comforting to believe that there’s something else)/Reading books on spirituality (He’s started reading books on different religions. Learning about other religions has made him think “that there’s got to be something that we’re here for”. All this gives him “inspiration” to think that death is not the end - It gives him hope. “The more you read/learn, the more you realise there’s nothing to be frightened of”)/ Accepting death (this participant suggests that he now has an acceptance of death/views it as a normal part of life/”when you accept death, the fear of it goes”)/Believing others do not want to engage in such conversations (This participant states that he is comfortable talking about death, but he doesn’t talk about it – he suggests that nobody wants to talk about it with him and he doesn’t want to upset others. However, he believes its important to talk about in order to reduce fears around of death) (Reducing death-related fears). 361 Appendix 22 – Analytical Memo Recorded on the Tentative Category ‘Recognising the Benefits of Thinking and Talking about Death and Dying’ Recognising the Benefits of Thinking/Talking about Death and Dying All participants have spoken about the importance of thinking/talking about death and dying. However, for most participants, this realisation was an integral part of becoming comfortable with the subject. Participants suggest that recognising the importance of thinking/talking about death and dying was prompted by their death experiences. In addition, for some participants, their death experiences have led them to recognise the importance of death conversations with children. What are the benefits? These participants believe that thinking/talking about death and dying has many benefits for not only ourselves but also for others - reducing/overcoming/eliminating worries and fears, getting the most out of life, accepting death, lessening emotional grief, enabling people to have a “good death”, enabling people to practically prepare for death, helping people to be more present to the dying person, supporting others after a bereavement, reassuring loved ones of end-of-life wishes/funeral arrangements, helping future generations to be less fearful, enabling people to be more involved in the death (not panicking), helping people to process death, preventing regret (end-of-life wishes/funeral arrangements). How does this category relate to other categories? For some participants, their death experiences have prompted them to recognise the importance of thinking/talking about death and dying. Although participants that have had a spiritual experience suggest the importance of thinking/talking about death and dying, no epiphany moment led them to recognise the importance of thinking/talking about death and dying. Additionally, for some, recognising these benefits has prompted them to want to begin actively thinking and openly talking about death - two participants suggest that they are not completely comfortable talking/thinking about it. However, because they realise the importance of thinking and talking about death and dying, this has prompted them to start talking about it as a way to explore their fears. 362 Appendix 23 – Written Account (Example) Having reached the age of 55 I have not experienced close family death (both my parents are still alive). My Dad was not close with his parents who both died whilst I was in my teens – I did not attend their funeral and had not seen them since I was 5/6. My Mum’s is still alive, leaving only my Mum’s Dad’s death of which I have any recollection. I was 9/10 and whilst I saw my grandfather on a regular basis I was not allowed to attend his funeral – I wasn’t sure if my parents thought this was best for me or best for me not to witness my Mum’s grief. I still don’t know as my only other recollection of any kind of death talk was taboo and quickly shut down. The next time death pricked my consciousness was soon after my divorce (aged 37) after becoming interested in Buddhism. Two aspects of Buddhism raised my death consciousness: one, my eyes were opened to how other cultures viewed death; and secondly, the concept of impermanence – how everything living thing be it a flower, an animal or a human all died. This was quite powerful for me at the time and, indeed, has never left me. My interest in Buddhism led me to read The Tibetan Book of Living and Dying and more recently Erica Buist’s “This Party’s Dead” which describes her travels around the world looking at how other cultures celebrate death. My interest in Buddhism helped me think about and confirm my own beliefs around what happens after I die which is that I don’t know, and I can also say that I am comfortable with not knowing. Whilst never being a regular churchgoer growing up, the concept of heaven and hell was the prevailing one in my early years. A relationship with a person who had a strong interest in becoming a Jehovah’s Witness was both an eye-opening and interesting insight into that particular “brand” of religion. However, it has only been in the last couple of years that I have more actively began thinking about my own mortality, how I want to die, discussing with my children (aged 30, 29 & 26) my thoughts around my funeral, etc. I was keen to attend a Death Café, but the COVID pandemic meant that I was unable to do this until September 2021. Unsure of what to expect, I joined a group of 12/13 other people – a mix of newbies like myself and regular’s who had been attending this Death Café for up to five years. I was not disappointed – just over an hour of open, respectful conversation punctuated with plenty of laughter ensued. At the next bi-monthly meeting I took my daughter who was curious enough to see what Dad was raving about! At the Death Café I attended, one pf the hosts had brought along her collection of books in the death space, including Ernest Becker – Denial of Death (now on my to be read pile) and Irvin D Yalom’s Staring at the Sun (which I read several years ago) The Death Café experience led to starting a WhatsApp group for myself and my three children – aptly called Dad’s Death Café where we have started conversations around my end of life planning. In addition to attendance at the Death Café, I have filled my Twitter timeline by following lots of people in the death space: end-of-life doulas; alternative burial options; cemetery/graveyard tours; death studies/courses; numerous podcasts all of which have helped raise my death awareness/consciousness. A couple of comments from the two Death Café’s from other participants have stuck with me: 363 “We need to make death sexy” “Death is a concept, until it touches you” Not long ago I would have agreed with the second comment but since I’ve invested more in working through my thoughts on my own death, for me, death is more than a concept – it is real and I more accepting and ready for my death than at any other time in my life. This belief was enhanced when I recently paid a visit to the local cemetery. The first grave I looked at was someone born in the same year as me – 1966 and died in 2010. Reading that headstone was like a punch to the stomach and walking around the cemetery really hit home about the finality of death – it is real. As I look to finalise my own plans for my death I have become aware of a couple of services that whilst not currently available, I would be interesting in exploring if they do: 1. Organic Natural Reduction (human composting) Currently only available in 3 US states but an alternative burial solution that in 30 days reduces a body to soil with all DNA gone; 2. Assisted dying With the growing argument for a change in the assisted dying laws in the UK, this is something I would consider if it became law. As I continue along my path of accepting my own inevitable end, I am gaining an even greater appreciation of my own life and shaping it in a way that suits me. Transcript Interviewer: So, are you happy to answer all the questions I've sent? Participant: Yeah, that’s fine. Interviewer: Erm, shall we start now then, yeah? Participant: Yeah, yeah, no, I’m good yeah. Interviewer: Okay. Erm, so, you’ve talked about how you weren't allowed to attend grandfather's funeral, erm, and I just wondered if you’d have wanted to. I know you were very young, but would you have wanted to attend? Participant: It's a really… erm, I don't… I suppose the honest answer is I don't know because it's such a long time ago for me. Do you know what I mean? It’s like… all I remember is that I just wasn't allowed to attend, and I was farmed off somewhere, erm, for that. So, I mean… but it has obviously stuck with me for quite a long time and what's quite interesting is… erm, I attended an online death cafe last night and one of the host said the same thing, that when she was 10 or 11 she wasn’t allowed to attend one of her… her grandmothers, I think, funeral, and she says that’s… that’s her driver for hosting a death café, becoming a doula, erm, and trying to encourage people to speak about death and dying. So, erm, just an interesting kind of snippet really and whether that's what’s… you know, why I'm here talking to you, why I've been to death cafes, trying to encourage my… you 364 know, engage with my children to talk about it as well, whether that is, you know, something that's sort of in my subconscious somewhere. Interviewer: Yeah. why do you think that it’s stuck with you then? you said that that's something that has obviously stuck with you or is it just… Participant: I think it's just stuck with me. It's just one of those things you think… yeah especially I suppose… I suppose especially now that it's… I'm sort of thinking about death and dying more more frequently these days. It’s sort of… it's just one of those things that has kind of gone, you know… and I… I'm not going to know why either now so… but yeah. I don't suppose there's anything… again anything specific but I just know that if, erm, if anything around that topic arose in the home, you know, my mum in particular would not be keen to… she would just sort of change the subject. oh we don't want to talk about that. That’s, you know, that's just a bit morbid, erm, you know whether that was… again I can't recall but maybe that was around, you know, she struggled with the death of her dad and maybe that sort of might have brought up feelings for her that she hadn't properly kind of work through. Erm, but i… and again whether that's a generational thing erm, because just listening to some of the people on the death café last night their parents voiced similar. You know, they they never talked about death, or you know what their funer… you know what their funeral arrangements were or anything like that. Some of them, you know, died without making any any arrangements. Erm, and even if you know my parents had wanted to talk about it, would they have had the opportunity like… you know… perhaps there is a bit more opportunity these days to you know engage and talk to people. Interviewer: Erm, you have already answered this, erm, a bit, erm, what what what, err, made you think that these conversations were taboo? you said that… well obviously they were shut down but… Participant: It could be generational. It could be my own… like I say, my own mum’s grief grieving, erm, brings up memories she doesn't want to be thinking about. Erm, that’s really all I can think about, erm, or suggest for that. Interviewer: Erm, so, err, did you start to actively explore your relationship with death after you became interested in Buddhism? So, like… so, erm, did your interest in Buddhism first prompt you to want to start exploring your relationship with death? Participant: So, it was definitely when I… so I read a book on Buddhism. It was through reading that book, that that opened my eyes, a) to how they look at death and dying and just generally other cultures approach to death and dying as well. So, I didn't… yeah, so it was… erm, it was that way round, rather than the other way round, if that makes sense? Interviewer: Yeah. Erm, would you say that that and learning about, erm, the Buddhist texts and erm, the things that you’ve read, when you first became interested in Buddhism, erm, do you think that maybe has contributed to your openness around wanting to think and talk about death? Participant: I think definitely, yeah that's… that's… erm, just definitely, erm, being aware that, erm, that other cultures are more… appears to be more open, more accepting, erm, that death is one of those things that happens and it, it, it’s usually more integral to their way of life than what I've experienced maybe in in this society. That it’s very much a closed, a closed thing, shutdown mostly. Erm, so I… that definitely… that's definitely kind of made… I think made it… probably made… possibly made it easier for me to be sort of talking about it, going to death cafes. Erm, yeah, I definitely would say that. 365 Interviewer: Erm, err, so, err, you said that erm, it's only been in the last couple of years that you've begun to think about your own mortality more actively, err, why why do you think that is? Participant: Erm, I suppose… I guess I’ve been aware of the death cafe movement for some time… more than… more than two years. Erm, and I thought oh that’s, you know, that's interesting but never kind of… I don't know if there was anything even close enough for me to attend, you know, maybe a few years ago. Erm, so whether… whether it popped up into my time… my Twitter timeline, a couple years ago and I thought that I really need to kind of see if I can attend one and the of course, you know, the pandemic here which kind of scattered – skuttled? things a little bit. So, I’m… again I I can't think of anything that's particularly triggered it, but I would… I would suggest it's probably things that I've seen on Twitter… that have gone… right, okay, I need to kind of maybe go along and and do that and then I suppose the other thing is, erm, I'm more aware of how old I am. So, since I turned 50, I’m 56 now, I would, erm, it has kind of been… popped into my consciousness more, that I'm getting a bit older and, you know, I'm probably closer to death than I am to being alive kind of thing (laughs) if you know what I mean? So, I would say that that that's definitely probably been in my… in my, you know, in my head as well, as to why I've kind of become a bit more active in in thinking about it, reading about it, talking about it. Interviewer: Yeah. erm, so can you… I know that you mentioned like a few topics that you've explored but, erm, could you explain further sort of the kind of things that you've been actively thinking about, that’s death related? Participant: Yeah. So, I think from a practical point of view, you know, I've made some positive steps towards making a will. Erm, I'm thinking about Funeral arrangements. Erm, so that, err, so that there's… those things… so, basically those things are in place when I do die and that, you know, all of my children are aware of my wishes, erm, how to… you know, how to access… make sure, you know, just bring all my affairs to a close that kind of thing. So, certainly, definitely the practical side of things. Erm, with the… you know, with the actual sort of how do I want to die, so up until a few months ago it would have been cremation and it still is cremation because I think that's probably the thing in this country that as of today is what I would go for but, erm, I'm aware of the sort of human composting movement in the US, erm, and if that was in this country then that would be something that I would be going for. So, it's kind of like… yes, so that… I mean that's… so that's been a really interesting thing to just kind of explore and know that there might be an alternative to the cremation route. Erm, like I said try and then… and then really on the back of that trying to engage with my children in in terms of, erm, erm, want… making sure the after I die, what do they want, what do they want to… how do they want to remember me, what do they want to do, erm, rather than me give them a prescribed, you know… I want to be cremated at this place and this is going to be the music and et cetera et cetera. I'm trying, you know, I want them to be part of it and have those things in place so that when I do die there's less things for them to think about kind of thing. Interviewer: Yeah. Participant: Erm, so I think those are the kind of… the key things. Erm, but then just attending a death café. So, I've managed to be… gone… go to three now in person. Erm, and there always just… lots of things come out of those conversations. They’re a mixture of kind of… at times they are like really sad, erm, but also quite a lot of laughter as well, in the group, erm, and then just generally, just just… I just find it quite affirming and refreshing to talk with other people about the subject and to find out what, you know, where they're at, what… whether they’re having that sort of same kind of difficulty talking to their sort of loved ones and close ones and everything. Erm, I suppose those are the key things for me. 366 Interviewer: Erm, do you think it's important to practically prepare for death? Participant: So, for me, yes (laughs). I mean again, erm, you know, listening to some of the people on the death cafe last night, you know, their parents have died and had no arrangements in place. You know, so not only are they dealing with their grief, they’re then trying to kind of workout, you know, how their dad may have wanted… you know, to have been buried or cremated or whatever it might be. So, for me, erm, absolutely, yeah. Interviewer: Yeah. Erm, so, can you explain… you have already a bit, but why you started discussing death with your children? Participant: Yes. So, erm, so, yes, so I think that, you know, that when I started thinking about the practical arrangements and then that that, kind of lead onto thinking well I'd like them to be… have a say in what that looks like. So, that was like the trigger really for me… is, you know, you know, saying to them look I’m going to start putting my will together, there's a few things I need to know from you and that… that's kind of helped the conversation get started. Erm, I think… having… after I went to the first death café, I thought well this is just, you know, for me it's really positive, erm, and after speaking with my daughter she was keen to come along to the next one which she has done. So, again that opens up… it just makes it easier to talk, you know, just makes the whole… it's not a… it doesn't become a taboo subject then it becomes more of a, well, let's, you know, here is something that we’ve been to or this cropped up or, you know, we can just talk about it like any other conversation really. Erm, so… so for me, you know, I guess because I can see the positive benefits of talking about, I'm… that’s why I’m engaging with my children to kind of, erm, see if they can become engaged with it a little bit. Interviewer: Erm, so how comfortable are these conversations then? Participant: So, with my daughter, erm, they’re good, erm, with my youngest son, err, he will… he will engage, erm, he… so he’s sort of in the middle. You know, he's kind of get, get, getting there if you like, but my oldest son is in complete denial, won't engage, doesn't want to engage, just thinks I'm going to live forever I think (laughs). So, yeah, so, he, you know, he, he's, he's not ready to be… he's not ready to talk about it yet. So, it's sort of a real mixture at the moment. Interviewer: Erm, so what made you want to attend a death cafe in the first place? Participant: So, like I said, I’ve kind of been aware of them for a little while, erm, I guess when that initial interest popped up, I couldn't find anywhere close by to attend. Erm, so once, kind of, restriction started to ease, last year, I found one that was about a 40-minute drive away. So, that’s… so, I just took the plunge and went for it, erm, and I’m glad I did, yeah. Interviewer: Erm, you’ve already answered this one as well but, erm, so how did… how did being able to freely talk about death feel for you? Participant: I guess, I don't know whether I was just… just…. just lucky or I… the fact that I’d… I'd been kind of more… I don’t know, reading about… reading about it for some time before I went to the first death café. So, I I suppose in some respects it it was something, you know, I was ready to do. Erm, and the group I was with initially was just there's… you know, it was a really open non-judgmental free flowing conversation and it, it, it was just really, yeah, it wasn't… I didn't feel any awkwardness at all. Yeah. so, is really positive for me. Interviewer: Erm, do you think that erm, attending death cafes or even just the first death cafe that you tended, erm, has affected your openness to thinking and talking about death and dying? 367 Participant: it… yeah. More more so I think… Interviewer: How has it done that? Participant: I think, erm, I think just from how it’s made me feel. It’s made me feel much more comfortable with… with talking about it and, you know, what I’m increasingly coming away from these and these conversations is how it's making me reflect on how I'm living my life today and I think that's probably been the biggest shift for me, is, you know, what… there's an element of kind of like peace of mind that if I've got my will in place, my funeral arrangements in place, I know that's all taken care of then at some point, you know, I'm going to die and hopefully I… I, you know, hopefully I'll just die in my sleep and there won’t be lots of, you know, pain and suffering and all that kind of stuff. So, when… I kind of, in some respect for me that’s… like I feel comfortable that I’ve done that but the whole reflection point is actually how I’m… you know, am I… what am I doing each day to ensure that I'm getting the most out of each day and I don't mean kind of, you know, living hedonistically or going of partying or going out all the time or anything like that, it just means what am I doing that's making me feel most comfortable each day (inaudible) in a way that suits me, and I think that’s been a real reflection for me and a real focus for me is that that switch away from, you know, yes, I'm going to die and all… and everything’s connected with that but actually what's more important is is how my living today. Erm, so, I think that's been, that's where I'm at the moment. Interviewer: Erm, so I just wondered what what intrigued you about the two books that, erm, the death cafe host brought… like what made you think I'm going to read them or what… I think one of them you had already read… Participant: Yeah, to be fair there was about… she probably brought about 30 or 40 books. The whole table full of books. Everything from, you know, erm… some that I've already got in my, on my… on my bookshelf. Erm, but things like… erm, there’s Ernest Becker’s Terror Management Theory. Erm, so that’s… she had that on her, on her thing and that’s something I’m keen to read, erm, but everything from grief, to loss, to… covering the whole spectrum, I think. Erm, and I, you know, reading is something I enjoy doing anyway so… it just, it just… I suppose it gave me two or three other books to think about, you know, adding to my collection to read at some point. Interviewer: Do you think that reading about these different death-related topics has contributed to you becoming more open to thinking and talking about death? Participant: Yeah, completely, yeah, just the whole spectrum of, of, erm, so, you know, just in my normal reading, I quite often read, you know, crime books where the, you know, the, the protectionist is a cold-blooded serial killer, you know, quite gruesome and all that. So, you’ve got the kind of death with that… but all of these other… you know, the other books around different cultures just… it, it just opens your mind up, but then there's, you know, there's this the whole thing about… I said the human composting thing, there's graveyard tours, there's… I mean gosh, there’s so much out there in that space of, you know, people, people kind of… as part of their everyday life just dealing with something that’s to do with death, but, you know, it could be those that care for people, you know, in the care space or the palliative space, whatever it might be, it’s, erm, so Kathryn Mannix’s book With death in mind is again just another really interesting perspective of taking away some of that fear of what people might have when they think they're going to die, it’s not always as bad as what you think. So, again just just reading as broadly as possible just breaks it down. You know, it's not this, you know, thing to hideaway in the corner and, erm, leave it until it is too late kind of thing. 368 Interviewer: Yeah, absolutely. So, what made you decide to create the dad’s death cafe WhatsApp group? Interviewer and Participant: (laugh). Participant: I… it, it was just… I… having… this was after the first death café I attended. I just thought… it was just a quirky, a quirky way to kind of engage with my children because obviously they all use WhatsApp, so they are familiar with the technology, erm, I try to be a little bit funny with it. Erm, you know, and again it, it… so far, it’s worked, it worked reasonably well, you know, erm, apart from the practical things that we've discussed on there, if I see something that I think is interesting, I'll post it, and we'll get a little bit of engagement, a little bit of conversation. Erm, so, yeah, so for me, it's a channel that's always there, that… again it can be… it doesn't necessarily have to… you know, it’s separate from everything else that’s going on but if there’s something relevant…there’s a, there’s a… for me there’s now a way to engage with them without it being a big thing. So, I think for me that's… yeah. That's, that's working really well at the moment. Interviewer: So, you’ve mentioned how does it feel being able to talk about death and dying with your children, erm, but is there anything you'd like to extend to… Participant: Yes. So, I guess the the next kind of step with that is… so my daughter has three daughters. Okay. So, I’ve got three granddaughters age 7 to 3, and I just think, it would be… you know, as, as things arise, you know, we can start to engage with them in a way that, you know, they they become more accepting that… not just people but pets or flower… even flowers, you know, they die, it’s… that's part of… that's what happens or a fly, I think… that's one of the conversations I sort of had with my little granddaughter is about a fly dying and she was like no, no, no, it’s not going to die, well, yes, you know, it will die kind of thing and so, so, for me that's that that's the next progression if you like, that’s a bit kind of formal word for it, but I think especially with my daughter on board, we will be able to find ways that we can just sort of introduce that in a much softer way. so, that they… so, for them death isn’t… it becomes more of a well this is what happens, not a… not a kind of… not letting it be put under the carpet and not talked about. Yeah, so… Interviewer: Yeah. Erm, could you explain how following the death related page pages on Twitter has raised your death awareness? Participant: Yeah. So, I, I find Twitter just such a source of so much different information because you’ll follow somebody and then they'll be following somebody and then they’ll retweet something and this is where it's kind of… you kind of find out about that all these people that are doing the graveyard tours or the cemeteries that host weddings or events and all sorts of, you know, just… I would never have thought of graveyard tours, you know, as a thing (laughs) but I appreciate that some are quite, you know, quite historical or the architecture is really, you know, interesting, if that's your thing. Erm, the human composting thing came out of just following somebody on Twitter. As I said, the spectrum is just so wide and it’s just, you know, erm, there's always something interesting to read about or whatever it might be. Social media just keeps it… it just keeps it in my awareness, I think. Erm… yeah. Interviewer: Erm, do you… so do you think that erm, that has contributed to you to being more open to think… Participant: Absolutely, yeah, because it’s just given me… again just a broader perspective of the whole space, you know, the whole… everything that's connected with death and dying. Erm, so, err, yeah, erm, but you never… and I suppose it’s just… for me it’s just having that open mind, you know, 369 so, for example, erm, at the previous… the last death cafe I attended, somebody talked about how spirituality was really important to them. it’s not something I’d ever really thought about but it's quite interesting to hear how for other people that's a source of comfort for them and it’s just, yeah. I I I guess it's just… it it's mainly really sort of empathic towards everybody really because we're all, you know, we’re all trying to get through then we're all going to die at some point and you know, we've all got a different agenda if you like. So, again the the host, erm, one of the hosts, erm, she's desperate for her children to have children so she’s… she had her children quite late in life so for her she she wants to live long enough so that her children have… so she becomes a granny basically and just how, you know, you can just… but that's affecting her and how she thinks about death and how she's living her life and everything else and it’s… erm, yeah. Interviewer: Yeah. Err, so, erm, I just wondered why why do you think that working through your thoughts has made death feel more real to you? Participant: I suppose… I (sighs)… in some respects it's not real because for me again I don’t know if this is sort of a bit of a double edged sword, I’ve never had any real experience of anybody close to me dying. Erm, so I've not had that real grief that’s associated with death and somebody said at one of the death cafes that death is a concept until it touches you and I can certainly agree with that point of view, for me, I guess the fact that I'm quiet, erm, I’ve sort of immersed myself in it quite a lot. I feel my death consciousness is a bit higher than some people. Does that make sense? Erm, so I… and the fact I... I guess it’s… it’s trying to kind of think well you… you don't know when you're going to go and you can… I could either sort of worry about that a bit or I can just go, well, I'm going to go when I'm going to go and can I just enjoy it while I can enjoy it. If that… I think that sort of sounds a bit muddled really but I think that's where I'm at with it. Erm, as I said earlier, the more I think about death the more it makes me think about how I'm… what I’m doing each day. Even to the extent of not just how am I living my life, how am I engaging with my children around, you know, the whole, you know, the death thing and everything else. And, erm, I think that's what the reflection has brought for me, is is that, you know, you know, so I… one of the books I read recently was 4000 weeks, erm, which are, you know, if you live to 80, is about… that’s how many weeks you've got and the guy was talking about, you know, people sort of talk about… they… how much they have time but nobody has time in the sense that I can’t, kind of, put a block of time over here and come back to it later, it… time is like now, kind of thing. So, again that was another book that kind of made me think about… yeah, it's like, you know, today's nearly gone, you know, and yeah. sorry, I’m kind of… I'm not sure… I know I'm probably not explaining it very well but it's it's it's, erm, it… I think it's bringing me… so I think with the… I think… if I go back to the Buddhist thing, you know, that’s what introduced me to kind of like being present, being here and now, erm, and everything else. And that was a sort of a really, sort of interesting concept at the time but it was… and I tried a little bit of meditation and things and it was an interesting concept but it was just more of a concept, but it stuck with me whereas now… now that I've kind of explored the death side of things it makes that even more pertinent and relevant. So, I think I'm sort of joining the dots a little bit with that as well. Interviewer: No, yeah, absolutely. Erm, so, erm, how… yeah how has exploring your relationship with death enabled you to accept and feel ready for your own death. You’ve obviously already touched on that… Participant: Yeah, but I guess… I guess I feel… as of today I guess I feel as ready as I could be, you know, if if I went to the doctors tomorrow and he said, you know, you've got terminal cancer and you’ve got six months to live, I… that would be like I’m sure I’d feel differently to some extent but I would know that I’ve put somethings in place that… I’ve start to take care of that, erm, so, I, you know, I don't know if anybody could ever be completely ready for it. I don't know because how how 370 do you know whether you're ready for it because you might… I might just fall down tomorrow and that's the end of it and I’m… that’s it, I’m gone, kind of thing. Erm, so, yeah, and in ten years’ time, I might feel different because I'm going to be 10 years older. I know I'm going to be closer to whatever or my my health might be different so that might affect how I… how I would feel about it, whether I'd be ready for it or not. Erm, I just think that if I continue to keep reading and talking and engaging, erm, that's that's a positive thing for me, erm, and as I said, I'm as ready as I think I am (laughs) because I know that things will change, you know, and… so the answer today is that one, if you interviewed in a year’s time it might be slightly different (laughs) and that might be an interesting thing to do. Interviewer: Yep (laughs). Participant: (laughs) you know, is to kind of, you know, this time last year you said this but how you are feeling today, you know. Interviewer: (laughs) Yeah. Erm, so do you think it's important to accept death? If so, why? Participant: I think it's… I think it's important in the same way that it’s important to accept everything in your life because otherwise you’re just in denial and if you're in denial I don't think that's a healthy thing for any… you know, whatever that might be. It could be death, it could be a relationship, it could be work, it could be anything. Interviewer: Yeah. Participant: So, I think… if you can, that's a good position to be in but I don't think it's necessarily any different to anything else that's important to you. It’s just that I think death can be hidden. So, you don't think about it necessarily unless you’ve got a dad that is telling you to think about it or something like that. Do you know what I mean? Interviewer and Participant: (laughs). Participant: Erm, but equally, you know, it could be a relationship thing and if you’re not accepting of it… of the relationship and whatever is going on with it, that's not a healthy thing either. So, I think I've kind of… trying… so, I guess I'm trying not to kind of again isolate death as something that is different necessarily it’s… you know, it's a… it can be a strong emotion a strong feeling but to deny those feelings is for me, certainly wouldn't be a good thing. I think that's… that's my philosophy. Interviewer: Yeah. Erm, so the next one is do you think it's important to be ready for death? If so, why? Participant: Erm, yeah, I… again I think that comes back to the accepting that you're going to die. So, if you've accepted that you're going to die then I think you're as ready as you can be. Erm, yeah, I think that would be a quite a short answer to that one, but I think that’s where I am with that. Interviewer: Yeah. erm, so, well, so, do you think that talking about death is important? If so, why? Participant: so, I'm… I'm finding it in… so, I think I've made that transition from, you know, reading books, looking at, you know, all the stuff that comes up on Twitter, to then going to a death café… I did my first online one last night. So, that was a different experience and then talking with you. So, so, for me is death, it sort of crystallised a lot of what I... those thoughts I’d had from just reading about it it makes it a bit more real as well because, you know, when you start to talk to somebody, you’re… it… you’re taking it out of your head and you’re putting it out there and sometimes just saying those things is helpful as well, even if nobody else agrees with you, it's not really about that, 371 it's just about expressing how you think. So, the whole… just the whole process of of just chatting with different people, again just helps, sort of, helps me… helps with how I'm thinking about death. not that I go around talking to myself (laughs). Interviewer: (laughs) yeah. Erm, do you think that sort of recognising the importance of death related conversations has made you want to be more open to talking about it or is it the other way around? Participant: Yeah, no, it's definitely… you know, I’m… so, I wasn't sure how I was going to feel after the first death cafe talking to people about it, but I would say I'm, you know, I'm now at the point where I'm thinking do I want to start my own Death Café because it's been such a positive thing for me. I can see it’s a positive thing for other people to have that space to talk about it, you know, and maybe I… I think about just doing something a bit closer to home myself. So, I… that's that's where I'm at the moment. Interviewer: Yeah. Erm, so this this is the last question. Erm, how do you think we can begin to feel more comfortable thinking and talking about death and dying? Interviewer: Err, yeah, I… I don't… I don't… I don't… it needs to be more, I would say in this country, you know, in this society, our society, it it would be helpful if it became more of a just normal conversation for people. You know, and death cafes is definitely a, you know, a forum for that. I know that erm, this death positive libraries do something similar. There's obviously the dying… what’s the charity? Interviewer: Dying matters? Participant: Yeah, dying matters, yeah. So, I think they do something similar as well. So those are all really good things but it's almost like it needs to go into mainstream. How do you get into mainstream society without… so… for people to kind of feel more comfortable with it but then you’ve kind of then thinking about it’s just a massive culture change, you know, because we're not going to, you know, are we going to have like our own day of the dead or, you know, something that, something similar where people actually go into the streets and celebrate, you know, the whole death ritual and everything can… and it’s just part of their their culture. So, I… it would need to be a… I think a sort of quite a seismic cultural shift for it to be less… you know, more openly talked about subject because… you know... So, there’s not kind of like loads of people trying to find an opportunity to talk about it. They might not have been aware of it. You know, it might just be a… you need a good PR person at death cafe to kind of, you know, be shouting from the rooftops about… or some… I don't know, it could be that, you know, because… that makes me remember one of the … so one of the other things is, I'm in a minority when I attend the death café, either online or in person, you know, men are very much under represented but one of the chaps, err, said, you know, we need to make death sexy because that… sex sells. You know, in a… in a… he said, you know… but it makes sense, you know, it needs a good PR campaign (laughs). It’s a bit funny if you think about it but, you know, I suspect if somebody came up with some sort of clever slogans and things like that, people might start to think about it slightly differently. Erm, yeah. 372 Appendix 24 – Outline of the Categories and Sub-categories that Form the Grounded Theory Categories Sub-categories Death-related experiences • Spiritual experiences • Near-death experiences • Experiences within work • Being faced with their own potential death • Being faced with the potential death of others • Experiencing the death of a loved one • Experiencing the complicated bereavements of others Recognising the benefits of openness • Preparing practically for death o End-of-life care and wishes o Enabling individuals to have a ‘good death’ • Tackling fears around death and dying • Recognising the benefits of death-related conversations with children • Coping with bereavement Exploring their relationship with death • Exploring and addressing fears around death and dying o Engaging with death (Promoting more death awareness) o Reconceptualising death • Exploring after-death beliefs o Engaging with death (after-death beliefs) • Enabling individuals to live life more meaningfully Conditions and context for openness • Different aspects of death • Conditional openness • Influence of perceived societal beliefs • Others unwilling to engage in death-related conversations • Promoting more openness |
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