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Objective: Previous research has explored the decision-making experiences of young people and their families in relation to orthognathic surgery (OS); however, less is known about how clinicians experience this process. Psychological, social, and cultural factors are highlighted when discussing young people’s experiences of living with and seeking treatment for a cleft lip and/or palate (CL/P), however the literature suggests that clinicians often do not receive training in this. The thesis portfolio aims to identify barriers and facilitators to engaging in shared decision-making (SDM) in acute paediatric surgery, whilst exploring how clinicians understand and consider psychosocial and cultural factors, when supporting young people with CL/P in their decision-making for OS.

Design: A systematic review was conducted which explored the perceived barriers and facilitators to engaging in SDM in acute paediatric surgery. In supplement, a qualitative study was conducted with nine clinicians working in CL/P services which explored clinician awareness and consideration of psychosocial and cultural factors, and ethical dilemmas arising during SDM.

Results: The review revealed four key themes; understanding the patients’ information needs, engaging in effective communication, promoting access to support and involving the patients support network. In focussing on OS, themes centred around the SDM environment, balancing patient autonomy and beneficence, and fostering opportunities for team liaison. Health inequalities were also highlighted, relating to socioeconomic status, financial and educational/employment considerations.

Conclusions: A complex interplay of factors were found to influence the decision-making process. Further research may wish to evaluate the effectiveness of SDM interventions, when supporting young people and their families. When focussing on OS, the gravity of making a decision is acknowledged whereby it is important to optimise the SDM environment and create opportunities for liaison. It is recommended that further research focus on exploring and addressing health inequalities

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EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 1     Exploring decision-making in paediatric surgery: A focus on the transition period and healthcare professionals' understanding of psychosocial and cultural factors in cleft orthognathic surgery.1 Holly Rose Clegg Candidate Registration number: 100373512 Doctorate in Clinical Psychology University of East Anglia Faculty of Health and Life Sciences  Primary Supervisor: Kiki Mastroyannopoulou Secondary Supervisor: Dr Eliane Young Submission date: 5th March 2024 Thesis Portfolio word count (Excluding, contents, title pages, figures, tables, acknowledgements and appendices): 27,554 This copy of the thesis has been supplied on condition that anyone who consults  it is understood to recognise that its copyright rests with the author and that use of any  information derived therefrom must be in accordance with current UK Copyright Law.  In addition, any quotation or extract must include full attribution  1 Material submitted as part of the DCLINPSY Thesis Proposal has been included throughout the thesis portfolio. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 2  Abstract Objective: Previous research has explored the decision-making experiences of young people and their families in relation to orthognathic surgery (OS); however, less is known about how clinicians experience this process. Psychological, social, and cultural factors are highlighted when discussing young people’s experiences of living with and seeking treatment for a cleft lip and/or palate (CL/P), however the literature suggests that clinicians often do not receive training in this. The thesis portfolio aims to identify barriers and facilitators to engaging in shared decision-making (SDM) in acute paediatric surgery, whilst exploring how clinicians understand and consider psychosocial and cultural factors, when supporting young people with CL/P in their decision-making for OS. Design: A systematic review was conducted which explored the perceived barriers and facilitators to engaging in SDM in acute paediatric surgery. In supplement, a qualitative study was conducted with nine clinicians working in CL/P services which explored clinician awareness and consideration of psychosocial and cultural factors, and ethical dilemmas arising during SDM. Results: The review revealed four key themes; understanding the patients’ information needs, engaging in effective communication, promoting access to support and involving the patients support network. In focussing on OS, themes centred around the SDM environment, balancing patient autonomy and beneficence, and fostering opportunities for team liaison. Health inequalities were also highlighted, relating to socioeconomic status, financial and educational/employment considerations.  Conclusions: A complex interplay of factors were found to influence the decision-making process. Further research may wish to evaluate the effectiveness of SDM interventions, EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 3  when supporting young people and their families. When focussing on OS, the gravity of making a decision is acknowledged whereby it is important to optimise the SDM environment and create opportunities for liaison. It is recommended that further research focus on exploring and addressing health inequalities. Key words: Cleft, Surgery decision-making, Barriers, and facilitators.                 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EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 4                     Table of Contents Acknowledgements..................................................................................................... 7 Chapter One:  An introduction to the thesis portfolio………………………………….………….. 8 Chapter Two: Systematic Review................................................................................ 18 Chapter Three: Bridging chapter ………….................................................................... 62 Chapter Four: Empirical paper.................................................................................... 65 Chapter Five: Extended methodology and reflexivity................................................. 99 Chapter Six: Extended Results, Discussion and Critical Evaluation........................... 107 Thesis Portfolio References ...................................................................................... 124               List of appendices .................................................................................................... 142 Appendix 1. Author Information, The Journal of Pediatric Health Care (JPHC)……… 144 Appendix 2. Quality Criteria of Included Studies………………………………………………….. 190 Appendix 3. CASP Checklist for Appraising Qualitative Studies…………………….………. 196 Appendix 4. CASP Checklist for Appraising Cohort Studies………………………………...… 202 Appendix 5. JBI Checklist for Appraising Case Reports…………………………………......... 209 Appendix 6. JBI Checklist for Systematic Reviews and Research Syntheses……,……. 212 Appendix 7. NHLBI Quality Assessment Tool for Appraising Observational and   Cross-Sectional Studies……………………………………………………………………………………….. 216 Appendix 8.Mixed Methods Appraisal Tool (MMAT)…………………………………………… .226 EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 5  Appendix 9. The Cleft Palate-Craniofacial Journal Submission Guidelines………….. 228 Appendix 10. UEA FHM S-REC Approval…………………………………………………………….. 252 Appendix 11. Health Research Authority (HRA) Approval………………………………….. 253 Appendix 12. Interview Topic Guide………………………………………………………………….. 256 Appendix 13. Recruitment Email……………………………………………………………………….. 257 Appendix 14. Participant Information Sheet………………………………………………………. 258 Appendix 15 Coding Framework……….. …………………………………………………………….. 260 Appendix 16. Participant Consent Form…………………………………………………………….. 264 Appendix 17.Example Coding of Transcript.………………………………………………………. 266 Appendix 18. Example Theme Development…………………………………………………….. 266 Appendix 19. Visual representation of searching for themes and subthemes ………………………………………………………………………………..…………………..…………………… 270 Appendix 20. Worked example of reviewing and defining themes………………….... 272 List of tables and figures  Table 1. Inclusion and Exclusion Criteria for Systematic Review……………………..…… 26 Table 2. Search Terms for Literature Review……………………………………………………….. 27 Figure 1. PRISMA Flow Diagram displaying the screening and study selection process……………………………………………………………………………………………………………….. 30 Table 3. Study Characteristics of Included Studies………………………………………………. 32 EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 6  Figure 2. Diagrammatic Representation of Descriptive and Analytic Themes, Depicting the Perceived Barriers, and Facilitators to Engaging in SDM Within Paediatric Settings………………………………………………………………………………………………………….…….47 Table 4. Themes and Sub-themes…………………………………………………………………….…. 75                EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 7  Acknowledgements First and foremost, I would like to thank the nine clinicians who kindly took part in the study and shared openly their experiences with me. It was a privilege and a truly invaluable opportunity to learn about your respective teams and how you experience the decision-making process.  I would also like to thank the clinicians who offered their time during the set up and design of the project, as well as thanking the local principal investigators at each site. The study would not have been able to take place without your ongoing collaboration and support, thank you, for all your support and for your interest and curiosity in the research! Thirdly, I would like to thank my family, friends and partner for their unconditional support, advice, and compassion. Your support, coffee meet up’s, walks, phone calls, and shoulder to lean on, has allowed me to reach the finish line, when at times this felt further away. Thank you, 100 times over.  Last but certainly not least, I would like to give thanks to my supervisors Kiki and Eliane. Thank you for your guidance, support, and words of encouragement on this journey. Your confidence and belief in me has pushed me to achieve more than I imagined, and I hope that the findings will continue to have an impact for years to come.     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 8  Chapter One: An introduction to the thesis portfolio A cleft lip and/or palate (CL/P) is a gap or split in the upper lip and/or palate, occurring in the first few weeks of craniofacial development in the womb. From the perinatal period onwards, patients follow a 20-year treatment pathway and can experience many challenges including difficulties with, feeding, hearing and speech. Surgeries to repair a CL/P typically occur during the first year of life, and many young people will require additional surgical procedures later in life (e.g. secondary speech surgery, alveolar bone graft, lip and/or palate repairs).  At the transition period (from childhood into adulthood, often around the ages of 16-18 years in cleft care), patients may elect for surgery to re-align the jaw, known as orthognathic surgery (OS). During this phase of treatment, patients are seen by a specialist multi-disciplinary team (MDT), consisting of Orthodontists, Surgeons, Speech and Language Therapists and Clinical Psychologists. Following surgery for OS, further surgery may also be elected for, including rhinoplasty and lip revision surgery.  The 20-year treatment pathway can be experienced as a difficult, and burdensome process for many young people, both in the sense of experiencing physical burdens related to pain, discomfort and having to make frequent trips to hospital, but also psychologically in the sense that many young people report experiencing accentuated feelings of being ‘different from others’ (Alansari et al., 2014). Alansari et al. (2014) in exploring how patients with CL/P experience the treatment pathway, illustrated through patient quotes how this process requires taxing perseverance which can be experienced as ‘fatiguing’ and ‘frustrating’. Patients also described how their interactions with clinicians could at times be solely focussed on the technical aspects of the treatment, without attention being paid to EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 9  personal aspects of the patients lives. Furthermore, patients also reported that clinicians may address their parents, rather than them (young person), directly, which could result in the young person feeling that they lacked importance or control. Contrastingly, patients recounted occasions whereby clinicians did address them directly, which resulted in the patients feeling worthy and in control (Alansari et al., 2014).  These findings are also reported, when looking specifically at patients experiences of the transition period, whereby young people have reported feeling “ill-equipped” to make treatment decisions, experiencing clinicians to talk over them, or leave the young person out of discussions (Wogden et al., 2019).  NICE guidance (2016) outlines recommendations for transition planning, and for support before and after transition from child to adult services, advising that transition should consider the young persons capabilities, needs, and hopes for the future. It also suggests that clinicians consult with the young person about how and to what extent, they want their guardians to be involved in their transition to adult care. Part of this, may include supporting young people to develop their confidence in working with adult services by providing opportunities to raise any concerns and queries separately from their guardian (NICE, 2016). This may however, be dependent on the set up of each hospital/care provision and whether paediatric and adult services are separated in this way. In assessing whether NICE guidance reflects young people’s experiences of transitioning from child to adult Cl/P services, the evidence base suggests that further consideration is needed regarding how these guidelines are implemented effectively, with recommendations being made around introducing transition workers, providing access to EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 10  medical history documentation, increasing liaison between professionals and developing age appropriate resources to facilitate the transition process (Mcwilliams et al., 2023). Health Inequalities and Cultural Beliefs in accessing Cleft Care Health inequalities are defined by NHS England, as “unfair and avoidable differences in health across the population, and between different groups within society” (NHS England, 2022). Consequently, specific groups and communities, are more likely to experience barriers to accessing healthcare, resulting in adverse health outcomes. The reasons for this are complex, and include (but are not limited to), the availability of services within different areas, access to transport and childcare, language and literacy skills, receiving misinformation, experiencing stigma, and poor experiences of accessing care and services in the past.  With regards to cleft care, families of children and young people with CL/P who come from lower socio-economic groups, were found to have higher rates of failure to present to initial and follow-up clinical appointments (Smillie et al., 2014). Stock et al. (2016), in reporting on adult narratives of growing up with a Cl/P and factors influencing psychological adjustment, highlight socioeconomic status, culture and religion as background factors. For example, in discussing socioeconomic status and the impact this had on one patients’ experience of cleft care, a participant commented on how their childhood environment had an impact on their psychological adjustment to cleft. The financial implications associated with taking the bus back and forth to appointments was also highlighted, resulting in this patient missing appointments.  Delays in receiving treatment for CL/P repair are also reported to be greater for patients who identify as being from a marginalised background or for whom English is not EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 11  their primary spoken language (Abbott et al., 2011; Zaluzec et al., 2019). Although there is little research describing how to address these disparities and systemic inequalities, the evidence base suggests that practises may be improved by increasing sharing of information amongst members of the cleft team and providers working in a more synchronised manner (Wagner et al., 2021). Different cultural perspectives on the aetiology and management of clefts are also reported (Hasanuddin et al., 2023) with treatment perspectives encompassing herbal and animal remedies amongst South African communities to placing the child/young person in sand and exposing them to direct sunlight in some Indian communities. These practices stem from aetiological beliefs that a cleft results from infection, consuming “wrong foods,” medication or beliefs that the cleft is predestined by God, or resulted from supernatural/mystical forces (Hasanuddin et al., 2023). In some cases, families may opt for no intervention, as the cleft is viewed as being a gift from God or spiritual interventions and traditional medication may be sought, leading to adverse consequences. Awareness of these cross-cultural beliefs amongst clinicians, is therefore crucial in promoting effective collaboration and positive health outcomes. The impact of experiencing a cleft, in respect to culture and religion, is also highlighted in a paper by Stock et al. (2016) in which a participant spoke of their experience of stigma and feeling less accepted in their community. The participant remarked on how being born with a CL/P  impacted on them finding a marriage partner, mentioning that their facial scars meant that other families would not feel that they were a suitable partner for an arranged marriage, and that other factors, such as their education and family background, EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 12  therefore became irrelevant (Stock et al., 2016). This further highlights the importance of clinicians understanding the social and cultural contexts and experiences of their clients. Current understanding of psychosocial factors and motivations for surgery  The American Psychological Association (APA, 2018) defines psychosocial factors as “social, cultural, and environmental phenomena and influences that affect mental health and behaviour. These influences include social situations, relationships, and pressures, such as competition for education, health care, and other social resources; rapid technological change; work deadlines; and changes in social roles and status’”. Psychosocial factors, experienced by clients with CL/P are reported widely across the literature with clinical guidelines stating that it is the responsibility of MDTs, to be sensitive to linguistic, psychosocial, economic, ethnic and physical factors that may affect dynamics between the team, patient and their family (The American Academy of Paediatric Dentistry, 2022).  In exploring psychological factors, research has found depression and anxiety to be reported around twice as often by clients affected by a CL/P, compared with controls, with psychological factors being associated with appearance related concerns and a desire to undergo further treatment (Ramstad et al., 1995).  Motivations for undergoing OS amongst patients, are reported to include improving facial and dental aesthetics and improving interpersonal relationships, psychological well-being, and self-esteem. In interviewing patients about their decision-making for elective surgery, improvement in self-perception was noted as the major goal, with physical and functional benefits also being described (Alansari et al., 2014). In contrast however, patients may hold the belief that undergoing OS will improve their romantic relationships or may lead to professional growth, overestimating the impact that surgery may have (Miguel et al., EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 13  2014). It is therefore of importance for MDT professionals to explore motivations and expectations around surgery, so that these are not misaligned (Miguel et al., 2014).   Although function and aesthetics have been noted as primary motivators for OS, research has challenged this, suggesting the reasons for seeking treatment are multifaceted, complex and may be subject to socio-cultural influences (Patcas et al., 2017). The authors highlight the need for clinicians to acknowledge and understand the socio-cultural context of their patients, recognising the influence that different geographic locations may have on motivations and expectations around surgery (Patcas et al., 2017).  Although it is recommended that MDTs should have an awareness of psychosocial and cultural factors, research has found that clinicians often do not receive formal training in this area. In particular, in a study conducted by Stiernman et al. (2019) exploring parental and clinicians views on psychosocial and education outcomes in patients with CL/P, no clinician reported having formal training on psychological factors. This sample included Surgeons, Orthodontists, Nurses and Speech and Language Therapists. Clinicians in the study, alternatively disclosed that their main source of information had been derived from seminars or conferences. It is therefore of importance to understand how MDT professionals working in cleft settings, identify and understand psychosocial and cultural factors and implement this knowledge when supporting young people, of which previous research has recommended conducting future research to explore clinician perspectives (Acum, 2018; Safarikova, 2021). Ethical Dilemmas experienced during surgery decision-making The American College of Surgeons (ACS) outlines six core ethical dilemmas that surgeons are presented with in their practice, with modern day practising surgeons identifying with the following four categories: ‘professional obligations,’ ‘competition of interests’, ‘truth EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 14  telling’ and ‘end of life care’. In considering ethics applied to cleft care and surgery decision-making, the concepts of autonomy, beneficence, nonmaleficence and capacity have been debated (Strauss, 2002). Autonomy suggests that a patient is able to make decisions about their treatment, whereas in contrast, beneficence would imply that the professional provides what is felt to be in the patient’s best interest. These principles therefore sit in contrast to one another, raising ethical considerations as to how clinicians navigate this dynamic and promote shared decision-making in a way that achieves favourable health outcomes.  An additional factor to consider, is the idea of competence and the age by which patients make autonomous decisions. Although the legal age a patient can consent to treatment is 16, children under the age of 16 are able to consent to their own treatment if they are believed to be Gillick Competent. In the case of craniofacial surgery, it may be considered “ethical” to empower a young person under the age of 15 to make decisions and contribute to discussions surrounding their care but may not be “ethical” to perform a procedure. This therefore poses considerations as to how these ethical dilemmas are navigated by clinicians working in cleft settings when considering the transition period of responsibility for the decision-making (from parent to young person) and OS in particular.  It is also of importance, to consider a patient’s comprehension level, cultural context, educational background, and language skills when discussing consent, and is paramount that information is not only provided, but is understood (Kleinman, 1979). Particular attention should therefore be given to communication and any differences that exist between professionals, families, and patients they serve in ensuring informed consent.   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 15  Team working and communication Health Education England (HEE), in producing the ‘Multidisciplinary Team Toolkit,’ define an MDT as “a team consisting of individuals drawn from different disciplines who come together to achieve a common goal” (HEE, 2021). The Social Care Institute for Excellence, further expand on this definition, outlining a set of aspirations for MDTs, regardless of the goal (SCIE, 2022). This includes, bringing together team members from diverse backgrounds, understanding each members roles and responsibilities in creating a shared identity, enabling better communication, productivity and trust within the team, and working in a holistic and personalised way in ensuring fewer errors are being made. The SCIE, also outline factors that may increase the effectiveness of MDTs, which include having a clear purpose, a leadership style that encourages contributions from different team members, having collaborative spaces and operating in a person-centred way.  One of the outcomes from the Clinical Standards Advisory Group report (Sandy et al., 1998), advised that having multidisciplinary teams delivering cleft care, would improve the outcomes for children born with CL/P. Within cleft MDTs, the importance of having clearly defined roles and responsibilities is also highlighted (Young, 1998; Sloper, 2004; Arskey et al., 2007; Choi and Pak, 2006). Reassuringly, research exploring the perceptions of team members working in cleft services in the UK, has found clinicians to report positive perceptions of the way their teams work, with ‘team identity’ being the highest scoring area (Scott et al., 2015). This suggests that overall, individual team members have adopted a positive view of their role within the team. In contrast, the areas that received the lowest scores, concerned team foundations and leadership, which may warrant further exploration.  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 16  In reporting on the ‘ideal multidisciplinary cleft lip and palate care team,’ Frederick and colleagues (Frederick et al., 2022), reported that successful leaders led by consensus of their team members, and not in an authoritarian manner (Kummer, 2018). Additionally, the importance of working in a family-centred and collaborative way, in which input from each team member is gathered, is highlighted (Frederick et al., 2022).  Shared decision-making  Previous research has highlighted the role of shared decision-making (SDM) in relation to making decisions about elective surgery and has discussed models of decision-making implemented within healthcare settings (Acum; 2018). Citing a systematic review by Boss et al. (2016), Acum (2018), makes reference to SDM, and the impact of incorporating SDM practices on improving the quality of decisions made around elective surgery. Despite SDM being reported to have a positive impact on the quality of decisions being made, research has found that clinicians may underestimate how involved patients and their families wish to be in the decision-making process, which may hinder SDM. Acum (2018) also cites results from a thematic synthesis, which highlights reported barriers and facilitators to SDM, this including, acknowledging the expertise, values, and preferences of their patients (Barry et al., 2012) and creating awareness that patients can influence the decision-making process.  When specifically thinking about cleft settings, having insufficient understanding of facial difference and treatment and lack of involvement in decision-making relating to age and influence of ‘powerful’ stakeholders ‘taking charge’ were reported to be barriers to shared decision-making and in particular, autonomous decision-making (Bennett et al., 2019).  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 17  Facilitators to shared decision-making, reported in relation to cleft care, include collaborating with patients to find a mutually agreed upon treatment plan, and providing opportunities for patients to share their hopes and worries about treatment. It is reported that appropriate SDM, ensures the young person feels equipped to make decisions about their care and that they are knowledgeable about all the options available to them (Mcwilliams et al., 2023). Park and Cho (2017), through the process of conducting a concept analysis, present a model for understanding paediatric shared decision-making, defining SDM as “the active participation of parents, children and health professionals in reaching a compromise via collaborative partnership with a common goal for their child’s health” (P482). The model is broken down into three components, ‘Antecedents’, ‘Attributes’ and ‘Consequences’, of which ‘making a compromise’, ‘collaborative partnership’, ‘the active participation of parents, children and HCPs’ [in SDM] and sharing a common goal for child health were identified as being attributes of shared decision-making in the paediatric field (P483). As a result, the researchers propose that this decreases decisional conflict, enables mutual empowerment, improves child health status, and has overall implications for the quality of paediatric health care. Making or ‘reaching a compromise’ is defined as reaching an ‘outcome via mutual agreement,’ of which the researchers describe the interaction between clinicians and patients as a ‘negotiation’ that should result in an agreement of joint decision being made. The thesis portfolio will discuss the findings, in relation to Park and Cho’s (2017) model of shared decision-making.   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 18  Chapter Two  Systematic Review Title: what are the reported barriers and facilitators to shared decision-making related to surgery in paediatric settings? – A systematic review. Abstract word count: 277 Paper word count (excluding abstract, tables and figures): 5,878 Prepared in accordance with the requirements for submission to the Journal of Pediatric Health Care (see guidelines in Appendix 1)            EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 19  Acknowledgements The author would like to thank Sophie Chalker, Dr Rebecca Underwood, and Kiki Mastroyannopoulou, for their support in the screening and appraisal phases of this review.                 EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 20  Abstract  Objective: To identify and report on the perceived barriers and facilitators to engaging in shared decision-making (SDM) for surgery within acute paediatric hospital settings, as reported by clinicians, children and young people and their families.  Design: A systematic literature search was conducted using three electronic databases, CINAHL, PsycINFO and SCOPUS. The search was conducted from January 2012 to April 2023, identifying studies that reported on barriers and or/facilitators to engaging in shared SDM in a paediatric surgical context.  Results: Seventeen papers were included in the final report, 12 of which included qualitative methodology or a component of. The remaining five papers included observational, mixed-methods, cohort and case study approaches with one scoping review being included. Four analytic themes and 11 subthemes were identified through the process of conducting a thematic synthesis. Analytic themes included understanding the patient’s information needs, engaging in effective communication, promoting access to support, and understanding and involving the family’s support network. Underpinning these themes, were sub-themes centring around physician language and communication, the provision of information, incorporating the values and beliefs of patients and families within SDM and considering the time and frequency of discussions, supporting the recommendations outlined in NICE guidelines (NICE, 2021).  Conclusions: The present review contributes to the literature highlighting barriers and facilitators to engaging in SDM and has implications for physician and patient interventions. It is recommended that future research evaluates the effectiveness of SDM interventions EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 21  when focussed on paediatric surgical populations. Furthermore, it may also be beneficial, to explore how these skills and techniques, may need to be modified for paediatric settings. Registration: CRD42023395334 Key words: Shared decision-making, paediatric, surgery, child and adolescent, barrier, facilitator, surgery decision-making.               EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 22  Introduction “Shared decision-making” (SDM) is defined by the National Institute for Health and Care Excellence (NICE) as “a collaborative process that involves a person and their healthcare professional working together to reach a joint decision about care” (P32), (NICE, 2021). NICE guidance suggests that this should be based on evidence, the individual’s preferences, beliefs, and values and that the individual should understand the risks, benefits and possible consequences of different options that are presented to them. SDM is essential to delivering universal personalised care, of which the NHS Long Term Plan and NICE guidance both acknowledge how this involves considering the individual’s strengths and needs and empowering patients to make decisions that are right for them. The importance of  providing patients with the opportunity to choose to what degree they want to engage in decision-making, is also stressed (NHS England, 2019; NICE, 2021).  Although research has previously found clinicians to believe their patients prefer not to be involved in decision-making, or that they are not able to take an active role in this (Wogden et al., 2019; Hoffmann et al., 2014) a survey by the Care Quality Commission (CQC, 2020) and the results of a GP Patient Survey (2022) found that individuals want to be more involved in making decisions about their health and care; warranting further exploration in this area.  Much research has been conducted into the barriers and facilitators to engaging in SDM, with research focussing on the perspectives of clinicians, patients, and their families.  For the purposes of this systematic review, the term 'barrier' was defined as any factor that was perceived to obstruct successful implementation of SDM and the term EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 23  'facilitator' was understood as any factor that was perceived to help enable successful implementation of SDM. Waddell et al. (2021) in reporting on the barriers and facilitators to implementing SDM from multiple perspectives, discussed system level factors such as having a lack of guidance or training around SDM in addition to clinician-related factors impacting on SDM such as holding beliefs that the patient or colleagues would not want to engage in SDM, lack of training  and assuming the patient understands the information given. Patient related factors included not being provided with adequate information to be able to make a decision, provider biased information, limited understanding of risk or knowledge about their condition and options, perceived ‘unacceptability’ of asking clinician questions and believing that the clinicians role is to make the decision (Waddell et al., 2021). In examining facilitators to engaging in SDM, these were described as including the patient in SDM as soon as possible, involving family, having a trusted relationship with the clinician, including SDM in medical students training and including SDM within professional role descriptions for clinicians. In looking at paediatric settings in particular, which for the purpose of this review, are defined as settings whereby clinicians specialise in the medical or surgical care of children and  young people up until the age of 18, similar barriers and facilitators have been reported to those identified in the adult literature. These include, receiving poor quality information about the condition and/or treatment options that were not appropriately tailored to the child and family’s health literacy needs. Trust and respect between the clinician and family was also reported to be a key facilitator to engaging in SDM (Boland et al., 2019).  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 24  The legal age of consent to treatment, is 16, however a young person under this age may be considered able to make decisions about their care, if they are perceived to be ‘Gillick Competent’. Effective shared decision-making, should therefore aim to empower young people, especially when working with young people who are expected to transition to adult services (NICE, 2016). Particular attention should also be drawn to the values and belief systems of families, and the social and cultural contexts of which they derive. The present review The current review aims to identify and report on the perceived barriers and facilitators to engaging in SDM, with a particular focus on SDM applied to surgery decision-making in paediatric settings. In synthesising the literature, the current review aims to answer the following question; ‘what are the perceived facilitators to engaging in shared decision-making when making decisions about surgery within paediatric settings?’. Definitions of terms In making reference to SDM throughout this review, the NHS England definition of shared decision-making was used. NHS England define shared decision-making as follows; “a collaborative process through which a clinician supports a patient to reach a decision about their treatment. The conversation brings together the clinician’s expertise, such as treatment options, evidence, risks, and benefits, what the patient knows best: their preferences, personal circumstances, goals, values and beliefs” (NHS England, 2019).     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 25  Methods Design A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A protocol outlining inclusion and exclusion criteria and process for carrying out the systematic review was developed and registered on the international prospective register of systematic reviews (PROSPERO; 2023 CRD42023395334).   Information sources and search strategy Included papers were identified through searches carried out on the following databases: PsycINFO, SCOPUS and CINAHL. Guidance was sought from an experienced university librarian in deciding upon the search strategy, in particular, with identifying search terms and time period for the search. Search terms focussed on the setting where SDM was carried out, the population being studied and using similar terms to encompass ‘barriers’ and ‘facilitators’. The final search terms and inclusion and exclusion criteria are presented in Tables 1 and 2. A previous systematic review explored the literature surrounding patient-reported barriers and facilitators to shared decision-making in healthcare up to 2012 (Joseph-Williams et al., 2014); therefore a time period of January 2012 to April 2023 was chosen to ensure the literature was contemporary.  In the UK, a child or young person may remain under the care of their Paediatrician, up until their 18th birthday (NHS England, 2017) although often young people may transfer from age 16 depending on the service and health condition guidelines. The age of consent to treatment is 16, however if a young person is deemed to lack capacity, a parent or guardian EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 26  may be required to make a decision in their best interest. Encompassing the literature up to the age of 18, may therefore provide insight into any differences reported with respect to perceived barriers and facilitators to SDM, occurring between the ages of 16 and 18, that otherwise may have been excluded. For this reason, the current review includes papers that discuss SDM in relation to children and young people aged 18 years or below. Table 1 Inclusion and Exclusion Criteria for systematic review  Inclusion Criteria Exclusion Criteria Written in English  Not written in English  Dated between January 2012 and April 2023 Dated before 2012 or after April 2023 Makes reference to factors that obstruct or enable successful implementation of shared decision-making (Barriers and/or Facilitators) Population aged 19+ (Adult) or where the paper discusses both adult and child populations within the same paper.  Makes reference to shared decision-making in the context of surgery  Barriers and/or facilitators discussed but not in the context of surgery decision-making  Shared decision-making discussed in the context of paediatric setting (aged 18 years of below). Paper reviews a decision-making tool or decision aid/communication aid and does not discuss barriers and or facilitators to shared decision-making.   Where barriers and or/facilitators to engaging/implementing shared decision-EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 27  making are discussed in the context of treatment planning only and not surgery.  Paper outlines a protocol or is an evaluation of guidance/policy.  Focusses on the perspective of one group in isolation, not shared decision-making (e.g. discussing parent reported factors, but not shared decision-making that involves another party).  Table 2 Search Terms for literature review  Concept 1 Concept 2 Concept 3 Concept 4 Decision Mak* Child OR Adolescen*  Surg* Hospital OR Patient Participation  OR Teen* OR Operation  OR Acute Setting OR Patient Involvement  OR Young Person*  OR Hospital Setting OR Informed Decision  OR Juvenile   OR Healthcare  OR Informed Choice  OR Paediatric   OR Healthcare Facility  OR Choice Behaviour  OR Pediatric   OR Inpatient  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 28  OR Decision Support  OR Youth  OR Inpatient Setting    OR Clinic    OR Ward  Search results and study Selection 3367 articles were identified through the search strategy of which 3045 articles were screened by their title and abstract. In the initial phase, titles and abstracts were screened by two reviewers (HC and SC) against the pre-defined inclusion and exclusion criteria (Table 2), prior to carrying out full text searches. 2993 articles were removed in the initial phase, as they did not meet the inclusion criteria, or were identified as being additional duplicates. The second reviewer (SC) screened 7% of titles and abstracts during the initial phase in which screening was carried out using ‘Rayaan’, a systematic review tool. Rayaan allowed reviewers to be blinded to each other’s screening decisions of which any discrepancies were later discussed against the eligibility criteria in reaching a consensus. Following this, full-text articles were screened by HC for eligibility and inclusion in the final report, 20% of which were also screened by a secondary reviewer (RU). Any disagreements were resolved in which 17 papers were included in the final report. Figure 1 provides a breakdown of the literature search, illustrated by a PRISMA flow diagram, (see Figure 1).     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 29  Data extraction and analysis The following information was extracted from included full-text papers: • Author, year paper was published and country where research was based.  • Title of paper • Age of child/population being studied.  • Type of surgical procedure or condition being studied.  • Participants/stakeholders who reported the barriers and/or facilitators to engaging in shared decision-making.  • What barriers and/or facilitators were being reported.   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 30                               Records identified from three databases: (n = 3367 )  Records removed before screening: Duplicate records removed by EndNote (n = 322 )  Records screened (n = 3045) Records excluded (n = 2993) Reports sought for retrieval (n = 52 ) Reports assessed for eligibility (n =52 ) Reports excluded: Does not talk explicitly about barriers and/or facilitators to engaging in shared decision-making (n=24)  Not based in a paediatric setting (n=4)  Not focussed on surgery, or surgery decision-making (n=4)  Review included journal articles cited/to be cited separately (n=2)  Wrong date (n=3)     Records identified from: Journal article citation (n=2) Reports assessed for eligibility (n = 2) Studies included in review (n =17 )  Identification of studies via databases and registers Identification of studies via other methods Identification Screening  Included Reports sought for retrieval (n = 2 ) Figure 1: PRISMA Flow Diagram displaying the screening and study selection process  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 31  Results Identified studies and characteristics Of the 17 papers that were included in the final analyses and report, 12 of these papers had a purely qualitative methodology or component. Of the remaining five papers, one paper had an observational methodology, one paper was quantitative, one paper discussed case studies, one paper was a scoping review and another was a mixed methods study including both qualitative and quantitative components. Across papers, research was largely conducted in the USA (n=8) or the UK (n=7). Research was also conducted in Canada (n=1) and Sweden (n=1). Papers encompassed the perspectives of families, clinicians, and the young person themselves, with the age of the paediatric population being reported on, ranging from 1 day old to 18 years of age. The papers included clinicians and families, associated with various surgical specialities, including epilepsy surgery, neurosurgery, plastic surgery, orthopaedic surgery, cardiac surgery, and general surgery. Conditions being reported on, included tonsillectomy, fracture, shunt malfunction, hernia repair, transplant, dorsal rhizotomy amongst other conditions. (See Table 3 for further information).      EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 32          Author, Year and Country          Title         Age of child/Population         Type of surgical procedure and/or condition         Participants reporting barriers and/or facilitators          Barriers and/or facilitators to SDM reported Carlisle et al. (2023)   USA  A valued voice: A qualitative analysis of parental decision-making preferences in emergent paediatric surgery 1 day old (Min) to 13 years old (Max) Surgery for cancer, an emergent operation while in the neonatal intensive care unit (NICU) or extracorporeal membrane oxygenation (ECMO).  Conditions 1. Wilms Tumour 2. Neuroblastoma 3. Persistent Pulmonary Hypertension 4. Congenital Diaphragmatic hernia 5. Sepsis 6. Bowel Perforation 7. Necrotizing Enterocolitis  8. Persistent Pulmonary Hypertension  9. Gastric Perforation  Parents               Facilitators  1. Surgeons providing recommendations – feeling more confident and involved in caring for their children. 2. Providing concrete scaffolding to guide the further pursuit of knowledge.  3. Providing information and statistics or descriptions of the surgical procedure 4. Slow conversational pace with significant repetition.  5. Opportunity to ask questions about their child’s care. 6. Explaining the options  7. Viewing written and graphical information (drawings, brochures, figures) 8. Surgeons guiding online searches by providing reliable websites or preferred social media groups to parents. 9. Increased opportunity for virtual communication adjuncts (e.g. virtual presence during surgical rounds).  10. Providing parents with opportunities to advocate for their child as well as for families with similar surgical problems.  Barriers 1. Repeated questions from multiple teams  2. Use of acronyms  Table 3 Study characteristics of included studies EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 33  3. Poor surgeon demeanour  Atsaidis et al. (2022)  Canada   Understanding the effectiveness of consent processes and conversations in pediatric surgery: A systematic-scoping review  <18 years (Paediatric) 1. Plastic surgery 2. ENT 3. Multi-Speciality 4. General Paediatric Surgery 5. Cardiac Surgery 6. Pediatric Urology 7. Ophthalmology 8. Orthopaedic Surgery 9. Neurosurgery  1. Patients and families  2. Surgeons and surgical trainees     3. Other clinicians (non-surgical physician or nurses)  4. Hospital administrators or professional policy makers.                              Facilitators  1. Use of multimedia/visual tools (images, videos, presentations). 2. Providing written information 3. Repeat meetings and discussions with surgical team. 4. Individualising communication to specific patient/family.  5. Physician empathy  6. Trust in physician  7. Adequate time and opportunity for questions 8. Providing structure  9. Gauging parental comprehension 10. Considering moral values and beliefs of patients 11. Providing realistic goals 12. Disclosing the surgeon’s level of expertise  Barriers 1. Power imbalance – patients feeling intimidated or less knowledgeable.  2. Being provided with too much, or too little information.  3. Presence of added stress  4. Parental preoccupation with having a child in the room.  5. Limited language/comprehension skills. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 34  Boss et al. (2017)  USA Parent experience of care and decision-making for children who snore.                Ages 2-17  Sleep-disordered breathing/Adenotonsillectomy  Parents              Facilitators  1. Responsiveness of clinicians (answered questions, remained supportive, available). 2. Physician disclosure of medical evidence or information (verbal and written form) – percentages. 3. Trusting relationship with paediatric clinician. 4. Confidence portrayed by surgeon.  5. Personal characteristics (Genuine, understanding, not rushed, welcoming). 6. Relationship with Paediatrician who made the referral and inclusion of Paediatrician in the consultation and treatment process.                  Barriers  1. Lack of information 2. Personal characteristics (arrogance, judgemental) Samanta et al. (2022)  USA Physicians' Perspectives on Presurgical Discussion and Shared Decision-Making in Pediatric Epilepsy Surgery  Paediatric Epilepsy Centre Unspecified Paediatric Epilepsy Surgery Clinicians.              Facilitators 1. Going through the decision-making process again with families until a decision has been made, revisiting discussions. 2. Providing written information, handouts, charts, and digital tools (apps, websites, webinars, podcasts). 3. Patient testimonial videos suggested. 4. Surgeons discussing surgery statistics with family. 5. Suggestion of further physician specific education and training in effective communication, SDM and care planning. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 35  6. Use of social media posts to provide support, information and resources for potential patients and families.                Barriers 1. Providing too much information – overwhelm 2. Further training required around communicating and tailoring evidence to patients and families.  3. Discussing statistics too early on.  Lecouturier et al. (2015)   UK Treating childhood intermittent distance exotropia: a qualitative study of decision-making  Children up to the age of 12 years. Intermittent distance exotropia (X(T)) Clinicians  Parents                       Facilitators 1. Providing written information (clear and reliable information). 2. Having the opportunity hear from parents whose child had undergone the treatment. 3. Exploring values and preferences of families. 4. Including current data on success rates – discussing this with parents. Lerret et al. (2016)  USA Parents’ perspectives on Shared Decision-making for Children with Solid Organ Transplants 3 weeks to 17.5 years.  Heart, kidney, liver, lung, or multivisceral transplant.             Parents                          Facilitators  1. Provider attributes (Knowledgeable, approachable, transparent, accessible, dependable, supportive) 2. Overtly discussing SDM. 3. Humility from clinicians – naming when they do not have ‘all the answers’ 4. Delivery of information – professional, considerate and in complete manner. 5. Bringing lists of questions or concerns to meetings. 6. Parents seeking information beforehand (Reading) 7. Willingness to talk with families until plan understood.   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 36    Barriers  1. Conflicting information from what parents read or were told compared with information from the healthcare team. 2. Being made to feel inadequate, unintelligent or feeling judged by clinicians when asking questions. Links et al. (2020)  USA Parental role in decision-making for pediatric surgery: Perceptions of involvement in consultations for tonsillectomy. Aged 2-17 Tonsillectomy         Parents  Healthcare                       professionals                          Facilitators  1. Heightened information sharing/Information transparency. 2. Using clear, layman language 3. Tailoring decision-making roles to patients needs and fostering trust. 4. ‘Paternalistic communication style’ depending on needs.                        Barriers  1. Lower quality information 2. Clinician use of jargon 3. Parents desiring SDM but have limited involvement. Clinicians underestimating parents’ preferences to share decisions.  Papiez et al. (2021)  UK A qualitative study of parents’ and their child’s experience of a medical epicondyle fracture. Age 7-14                                     MedialEpicondyle Fracture            Parents   Children/ Young Person                                       Facilitators 1. Developing trusting relationships with surgeons 2. Preferring surgeons to make decisions. 3. Provision of consistent information 4. Family-centred approach that enabled parents and young people to develop the confidence to make a decision within a supportive environment.  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 37  5. Answering questions 6. Openness to repeated visits. 7. Reassurance  8. Feelings of personally being cared for and focussing on child. 9. Surgeons appreciating and contextualising the importance of pre-existing experience and beliefs Leu et al. (2021)  USA Assessment of Parental Choice Predisposition for Tonsillectomy in Children. Aged 2 to 17 Tonsillectomy  Parents   Children/Young Person  Clinicians                                        Facilitators  1. Clinicians having an awareness of parent predisposition in effectively tailoring discussions. 2. Clinicians initiating discussions about treatment preferences and aligning with families’ values. 3. Focusing discussions on treatment benefits to a child’s particular clinical situation as well as the parents’ unique concerns (individualising discussions)  4. Weight of the primary care clinician relationship and influence on decision-making. (e.g. Pediatriciians)               Barriers  5. Parents who had a predisposition to choose tonsillectomy were less likely to engage in decision-making process, less likely to ask questions. 6. Perception of adequate knowledge amongst parents may hinder honest discussions between clinicians and parents and may prevent parents considering alternative treatment options.  Smith et al. (2013b)  Parents’ experiences of living with a child with hydrocephalus: a cross Ages 2-13 Shunt malfunction Parents                                     Facilitators 1. Information delivered clearly and in a way that demonstrates empathy. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 38  UK sectional interview-based study. 2. Planned educational events, where there were opportunities to meet with other parents.            Barriers 1. Parents perceiving clinicians as unwilling to engage in in-depth discussions. About their child’s needs. 2. Restricting the information shared by parents. 3. Uncertainty around how to engage with clinicians and contribute to care decisions. 4. Information ‘overwhelming’ with overuse of complex medical terminology. 5. Emotions experienced on first learning about diagnosis can make it difficult for parents to comprehend information about their child’s condition. Smith et al. (2013c)  UK Are parents and professionals making shared decisions about a child’s care on presentation of a suspected shunt malfunction: a mixed method study?’   Ages 1-15 Shunt malfunction Parents    Healthcare Professionals                                    Facilitators 1. Eliciting and valuing parental concerns 2. Recognising parental knowledge  3. Establishing rapport and continuity with professionals 4. Building effective and lasting relationships with parents 5. Listening – listening to patient story 6. Information sharing 7. Valuing parent experiences            Barriers 1. Time constraints 2. Workload pressures 3. Lack of privacy when interacting with parents 4. Not feeling listened to 5. Being excluded when professionals grouped together (e.g. during wards rounds/care planning) EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 39  Waite et al. (2023)  UK ‘Wanting no regrets’: Parental decision-making around selective dorsal rhizotomy.   Ages 4-11 Selective dorsal rhizotomy Parents                                     Facilitators 1. Long-standing and trusting relationships with local clinicians. 2. Opinions, experience, and knowledge of the paediatrician  3. Experience-based knowledge of other parents: Information/outcomes/experiences from other parents who had been through SDR.  4. Suggestion of accessing psychosocial support to help make a decision away from medical clinicians. 5. Support from wider family.  6. Suggestion of bridging the gap between parents and health professionals on social media platforms.  7. Clinicians supporting information seeking ‘and decision-making with respect and mutuality.                                     Barriers. 1. Gaps in parental knowledge due to absence of long-standing and trusting relationship with local clinicians and short staffing. 2. Feeling intimidated/constrained/clinicians displayed apathy to engage in open dialogue. 3. Incongruency between own research and the narrative provided by clinicians. 4. Inconsistencies in online sources (e.g. unbalanced information).  Timmermans et al. (2018) Does patient-centred care change genital surgery decisions? The strategic use of clinical 0 to 5.5 years   Genetic Surgery/Disorders of Sex Clinicians   caregivers                                       Facilitators  1. Clinicians encouraging parents to consult additional materials from the patient advocacy community. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 40   USA uncertainty in disorders of sex development clinics.   Development.  2. Clinicians making other families available for consultation.  3. Clinicians providing parents with information about support groups and outside information.  4. Clinicians actively soliciting questions or concerns from parents. 5. Clinicians emphasising that there is ‘no urgency’ and allowing time to make decisions.  6. Addressing anxieties from parents Heath et al. (2016)   UK  Putting children forward for epilepsy surgery: A qualitative study of UK parents’ and health professionals’ decision-making experiences.  2.5 to 18 years Epilepsy Surgery  Parents  Clinicians.                                    Facilitators  1. Information provided in lay language. 2. Adequate information about surgery presented in a variety of formats (Information packs, booklets, photographs, videos, email address for asking questions to inform FAQ). 3. Providing ‘frequently asked questions’ information. 4. Parents increasing own knowledge through seeking out additional information (online information and videos) – empowering.  5. Discussing treatment options with family members (partners, siblings, grandparents, child). 6. Early and softer introduction of surgery as possible treatment option. 7. Peer support – accessing the experience and expertise of other parents who had followed a similar treatment pathway. 8. Involving parents in decision-making from the out-set.  9. Formalizing families as part of the child's MDT by systematically incorporating patient/family perspectives within case presentations in MDT meetings. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 41  10. Eliciting and incorporating opinions and assessments from multiple disciplines. Working cohesively as a team towards a shared goal.      Barriers 1. Inadequate information received from professionals. 2. Limited parental involvement in initial discussions regarding surgery candidacy  3. Not including patient-related information in MDT discussions. 4. Patient views not being sought until after the team have discussed treatment options. Sjoberg et al. (2015)  Sweden The perspective of children on factors influencing their participation in perioperative care. 8 to 11 years Tonsillectomy  Adenoidectomy   Teeth extraction  Tenotomy  Eye, Bulbus Oculi Outer ear plastic Achilles tendon extension Children                                 Facilitators 1. Preparatory information from clinicians and family members (parents searching the internet for information and videos). 2. Being listened to/mutual interaction. Clinicians asking children how they are perceiving the situation and if they have questions. 3. Children being able to decide on ‘small matters’ e.g. holding breathing mask, starting anaesthesia, food choices after surgery.  4. Interpersonal qualities of clinicians (kind, available, reassuring).  5. Meeting clinicians who would be involved in the surgery.          Barriers  1. Wanting more precise/more detailed information about the procedure. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 42   2. Preparatory information not being consistent with child’s experiences/insufficient information. Almoajil et al. (2023)  UK Exploring the factors that influence stakeholders’ expectations and subsequent perception of lower limb orthopaedic surgical outcomes for ambulant children with cerebral palsy – a qualitative study.  8 to 18 years Lower limb orthopaedic surgery/cerebral palsy Parents,   Clinicians   Children/young person                                          Facilitators  1. Providing package of information, based on the individual child and family’s needs. 2. Showing videos of post-operative changes (presenting best and worst-case scenarios).  3. Allowing sufficient time for decision-making and questions. 4. Shared goal setting – learning about goals from the child’s perspective. Including care-givers goals within this. 5. Meeting other families as a motivator for children towards surgery and managing expectations. 6. Family encouragement, patients’ self-determination, and previous experiences.                                   Barriers 1. Not receiving much information 2. Lack of time and resources  3. Lack of continuous health services 4. Previous experiences and pre-operative anxiety. 5. Uncertainty about the unknown (children). Loeff & Shakhsheer. (2021)  USA The ethics of informed consent and shared decision-making in pediatric surgery.  Unspecified, Paediatric.  Paediatric Surgery  (case studies centring on the below)  Neuroblastoma Gastroschisis Authors reporting on physician and parent experiences.                               Facilitators 1. Surgeon having a good understanding of the patients social and cultural background, aligning with the patients’ values, beliefs, and expectations. 2. Unhurried, honest discussions. 3. Surgeons’ skill in navigating dilemmas or conflicts in therapeutic choices and decisions. 4. Allowing time/space by modifying delivery of information. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 43  5. Quantifying risks numerically and percentage reporting. 6. Providing supplementary written materials/simplifying information.      Barriers 7. Surgeons’ personal biases 8. Lack of consensus between the parents or between parents/caregiver and surgeon. 9. Emotional and psychological state of participants. 10. Language barriers EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 44  Critical appraisal  17 papers were appraised by the primary author (HC) in the first instance. Five papers were secondary appraised by the primary supervisor (KM) in order to reduce risk of bias. Findings were discussed between researchers and any disagreements resolved. Papers were appraised by six different quality appraisal tools, owing to differences in the methodology and design. The author consulted with an experienced librarian during the appraisal process, in identifying and assessing the suitability of different appraisal tools.  Qualitative studies were appraised using the Critical Appraisal Skills Programme (CASP) Checklist for Qualitative Studies (CASP, 2018) and quantitative research appraised using the CASP Checklist for Cohort Studies (CASP, 2018). The JBI Critical Appraisal Checklist for Systematic Reviews and Research Syntheses (JBI., 2020) was used in appraising scoping reviews, with papers reporting on case studies being appraised using the JBI Critical Appraisal Checklist for Case Reports (JBI., 2020). Observational studies were appraised using the National Heart, Lung, and Blood Institute (NHLBI) Quality appraisal tool for Observational and Cross-Sectional Studies (NHLBI, 2013) and mixed methods studies appraised using the Mixed Methods Appraisal Tool (MMAT) devised by Hong et al., 2018). A copy of the screening tools can be found in Appendices 3 to 8. In assessing the quality of studies using CASP, computing an overall score is not advised (CASP, 2018; Noyes, 2018). This is also advised against when using the Mixed Methods Appraisal Tool (Hong et al., 2018). Appendix 2 therefore provides a table showing what criteria were met, in providing a discussion around the quality of papers using CASP and the MMAT. Half of the papers appraised using the CASP tool for qualitative studies met EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 45  90% of the CASP appraisal criteria. One paper met all criteria, and the remaining three papers met between 60 to 80% of the appraisal criteria (see Appendix 2).  In assessing the quality of papers using the JBI checklists, research has computed the percentage of criteria met in assessing quality (Valesan et al., 2021). Studies using the JBI tool were therefore assigned a quality rating of high risk of bias (<49% criteria met), medium risk of bias (50-69% criteria met), low risk of bias (70%+ criteria met) and the ratings for study’s assessed using JBI are provided in Appendix 2. In using the NHLBI checklist, a rating system of ‘good,’ ‘fair’, or ‘poor’ is advised, which is based on a critical appraisal of study characteristics (e.g. dropout rate, allocation bias, variance in baseline characteristics). An overview of criteria met for studies using NHBLI are provided in Appendix 2. Limitations resulting from Critical Appraisal  The main limitations noted across papers, concerned researchers critically examining their own role, potential bias, and influence during the research process. Regarding the appraisal of observational papers, it was noted that less than 50% of eligible participants, took part in the research with power, sample size and time periods not being stated (Leu et al., 2021), this paper was therefore given a rating of ‘Poor’. In assessing the quality of mixed methods approaches (Smith et al., 2013c) limitations were noted with respect to the integration of qualitative and quantitative methods and illustrating the value of conducting a mixed methods study in the interpretation of the findings. Furthermore, although papers mentioned receiving approval from an ethics review board and REC, warranting a ‘yes’ in appraising the discussion of ethics, the discussion around ethical considerations generally did not expand this. An overview of the breakdown of criteria, can be found in Appendix 2.   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 46  Thematic Synthesis A thematic synthesis was undertaken by the researcher, reporting on the barriers and facilitators to engaging in shared decision-making. This process followed the steps outlined by Thomas & Harden (2008). This methodology was chosen, as it allowed for the analysis of qualitative studies and identification of themes appropriate to the systematic review.  Data was firstly coded, capturing information relating to individual experiences and perceptions around the reported barriers and facilitators to engaging in shared decision-making. Secondly, similarities between codes were identified and codes grouped into 'descriptive themes'. This allowed for patterns to be identified across study data. The third stage involved synthesising findings across studies through the development of 'analytic themes', allowing for the interpretation of meaning applied to the research question. Four analytic themes and 11 sub-themes were identified through the thematic synthesis (See Figure 2).         EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 47              Figure 2: Diagrammatic representation of descriptive and analytic themes, depicting the perceived barriers and facilitators to engaging in SDM within Paediatric Surgical Settings.       EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 48  1. Patient Information Needs 1.1 Provision of information and Information seeking. 15 out of the 17 articles included in the review, made reference to the provision of information as either a barrier, or facilitator to engaging in SDM. Tailoring information to the child and family’s needs, providing information in a range of formats and multimedia; and information being clear, reliable and consistent were all reported to facilitate SDM (Heath et al., 2016; Lecouturier et al., 2015; Papiez et al., 2021). Conversely, providing too much information that was felt to be overwhelming, not receiving enough information, or receiving information that is felt to be inadequate, not precise or detailed and misaligning with children’s expectations, were experienced as barriers to engaging in SDM (Samanta et al., 2022; Atsaidis et al., 2022; Sjoberg et al., 2015; Heath at al., 2016). Parents were also found to seek out additional information online in their attempt to increase their own knowledge, which was reported to be empowering (Heath et al., 2016). Furthermore, it was mentioned that surgeons may have a role in guiding online searches by providing reliable website and preferred social media groups (Carlisle et al., 2022). This may also reduce access to online information and sources that are considered by some parents to be unreliable and unbalanced (Timmermans et al., 2018). Waite et al., (2022), illustrated this as follows, presenting the following quote from a parent, “Facebook it is very opinionated and not necessarily right, so much misinformation on there”. (p386). The role of clinicians in guiding online searches, was also put forward by Loeff and Shakhsheer (2021) as follows, “In some ways, the proactive patient can become more empowered with basic knowledge to engage in an informed consent dialogue, however, the surgeon may have to interpret data and explain misconceptions picked up by the patient” (p2). EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 49  1.2 Evidence base: providing statistics and percentages. As reported across papers, facilitators to SDM included surgeons discussing population-based surgery statistics with families and providing outcome data (Lecouturier et al., 2015; Samanta et al., 2022). It was further noted that quantifying risks numerically and percentage reporting, was a benefit within SDM discussions (Loeff & Shakhsheer (2021), “Percentage reporting may help a patient understand how often a complication happens in general and how likely it is to happen to their child.” (p2). In contrast, discussing surgery statistics too early in the SDM discussion, however, was reported to be a barrier to engaging in SDM (Samanta et al., 2022).  1.3. Time and/or frequency of discussions and consultation. Being provided with adequate time to validate and address parental concerns, revisiting discussions, and openness to repeat visits in order to consider decision-making and answer questions, were acknowledged as enhancing the shared decision-making process (Samanta et al., 2022; Timmermans et al., 2018, Papiez et al., 2021). In contrast, time pressures/constraints and lack of resources were reported to hinder SDM (Almoajil et al., (2022) Smith et al., 2013c). 1.4. Surgeons providing recommendations. For some parents and families, it felt important that surgeons provided structure and recommendations within SDM discussions (Atsaidis et al., 2022; Carlisle et al., 2022). This was illustrated by Carlisle et al., (2022) through the following parent quotes, “ultimately the surgeon needs to share what they're recommending and how they want to proceed’ (p534). Another parent explained that surgeons’ recommendations “kind of gave me something to look up online to try to figure out [things]” (p534). Despite surgeon recommendations being perceived as helpful, in one case, Carlisle et al., (2022) reported that the recommendation was found to be unhelpful, EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 50  due to the blunt manner in which this was delivered, suggesting barriers and facilitators to engaging in SDM, centred around communication and interpersonal characteristics.  2. Networks and Support Systems  2.1. Patient values, beliefs, and Cultural background. A key feature of SDM, involves considering patient preferences and values. Similarly,  the importance of understanding the patient’s social or cultural background has also been acknowledged as a facilitator to engaging in SDM, in the sense that the surgeon will be more prepared to recommend surgical treatments that align with the patient’s values, beliefs and expectations (Loeff & Shakhsheer., 2021). Lecouturier et al., (2015), in discussing the importance of incorporating patient preferences and values into treatment decisions, present the following passage: “In some families there had been conflict between parents on the decision around surgical intervention and clinicians could have a role to play; exploring the understanding, values and preferences of both parents may have helped to facilitate decision-making and alleviate concerns.”. (p9). This further emphasises the role clinicians have, in navigating SDM discussions, paying particular attention to patient preference, values and cultural background.EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 51  2.2 Relationships with/and involvement with other professionals. Families reported that the relationship with, and opinion, experience, and knowledge of their child’s paediatrician, impacted on SDM around surgery, reporting the involvement of the paediatrician in consultations and treatment process to be a facilitator to SDM (Boss et al., 2017; Waite et al., 2022). Children who were interviewed about their experiences have also reported that it is helpful to meet the clinicians that would be directly involved in their surgery beforehand, when making decisions in the perioperative period (Sjoberg et al., 2015). 2.3 Wider family involvement and or/support. Adopting a family-centred approach, having support from the wider family, and discussing treatment options with family members (partners, siblings, grandparents, child) were reported to be facilitators to SDM (Papiez et al., 2021; Waite et al., 2022; Heath et al., 2016). It was further mentioned that it is helpful to formalise the inclusion of families as part of the child’s MDT by systematically incorporating patient and family perspectives within MDT case presentations (Heath et al., 2016) and to learn about goals from the child’s perspective and include care-givers goals within this (Almoajil et al., 2022). In contrast, SDM was also felt to give ‘rise to conflict’ In some situations, if one parent was perceived to be more agreeable to surgery, than the other in these situations (Heath et al., 2016).     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 52  3. Communication  3.1 Clinician skill in navigating SDM discussions and Interpersonal Characteristics. The interpersonal qualities of clinicians were noted largely across papers as a facilitator to SDM. Physician empathy, kindness, genuineness, availability, re-assurance and understanding, were all noted as facilitators to engaging in SDM (Atsaidis et al., 2022; Boss et al., 2017; Sjoberg et al., 2015). The importance of clinicians embodying these interpersonal qualities within SDM, are illustrated in the following quotes: “I remember the ENT [physician] had the bedside manner. Understanding, wasn’t rushed. That’s a lot for me” (Boss et al., 2017, p15), ‘“It was very welcoming…Everybody was very, very nice. It eased our fears and made us so comfortable.” (Boss et al., 2017, p15). The interpersonal nature of the clinician in this instance, was reported as a facilitator, as it was felt to have created a sense of comfort and ease for the patient.  In contrast, clinician apathy to engage in open dialogue, arrogance, or being perceived as being judgemental, were reported as barriers to engaging in shared decision-making (Waite et al., 2022; Boss et al., 2017). This was illustrated by Waite et al., (2022), through the following quotation, “the consultant laughed at me…” (p386) and by Boss et al., (2017) “I felt a little judged by him” (p5) when referring to interactions with clinicians.  Surgeon skill in being able to navigate dilemmas or conflict in therapeutic choices and decisions was considered to be a facilitator to SDM (Loeff & Shakhsheer., 2021) as was the disclosure of the surgeon’s level of expertise (Atsaidis et al., 2022). Atsaidis et al., (2022), put forward this argument as follows “it is important to consider the social forces and the power imbalances inherent to the healthcare system, such as differences in role, status and knowledge which can easily undermine the effectiveness of informed consent. With regards EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 53  to surgical trainees, they must clearly state their role, share their level of training, and discuss with the patient and family that they are training under an attending surgeon.” (p842). 3.2 Language and communication. The use of acronyms and medical jargon have been reported to inhibit shared decision-making (Carlisle et al., 2022; Links et al., 2020) and the importance of using layman language, both verbally and in written communication is expressed (Links et al., 2020; Heath et al., 2016). Using a slow conversational pace with frequent repetition of information were also remarked on as being facilitators to shared decision-making (Carlisle et al., 2022). Parents feeling that they had not been listened to, or feeling excluded from discussions about their child’s care, were in contrast, reported as barriers to engaging in SDM. Smith et al., (2013c) presents the following quote “They don’t seem to take on board what you’re saying, that’s my feeling. No, they really have their own agenda and that’s what we are on now, their agenda” (Smith et al., 2013c, p1308). Timmermans et al. (2018) also references a quote from a psychologist, acknowledging similar feedback from patients, “Some former patients will say, “Mm, you know I would have wanted to be more involved.” (p525). The importance of working collaboratively, is highlighted further by Smith et al. (2013c), summarising this with a quote from a Junior Nurse, “I think they should be involved to some degree and you need to listen to them and explain and usually they are on the same page as you anyway.” (P1308). 4. Additional sources of support  4.1 Accessing peer information/support and online communities. Having the opportunity to hear from other parents whose child had undergone treatment, accessing information from peer support groups and clinicians making other families available for EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 54  consultation were found to be facilitators to engaging in SDM (Lecouturier et al., 2015; Timmermans et al., 2018). Waite et al. (2022), present the following quote from a parent in highlighting this, “Having the opportunity for parents to talk to or find out about other kids who have had it, other kids who have had it and it hasn't worked for them or actually something hasn't gone right for them and other parents who've made the decision not to have it and what happened with their child. And then you make a rounded decision, not a decision on, ‘This is the best thing ever, it's good, it's got to be done’.” (p385).  It was further suggested in one paper that educational interventions for patients and families may be beneficial in facilitating decision-making, making reference to patient testimonial videos in particular (Samanta et al., 2022), “It’s difficult for us to understand or empathize or wrap our brains around, but testimonial videos put ourselves in somebody else’s shoes and understand what’s going on. So, I think for the right patient, it might be helpful. (Neurologist)” (p17). 4.2 Mental health, Stress, and psychological needs. Included papers also made reference to considering the psychological and emotional experiences of families and or/clients during SDM, with it being raised that clinicians should be mindful and aware of parental stress and anxieties (Timmermans et al., 2018). Offering psychological support to patients was discussed, with it being suggested that this would offer a space to discuss decisions away from medical clinicians (Waite et al., 2022), “Many parents were social media users and joined social networks to seek and share information. These online forums offered parents the potential to have dialogues, in lay language, ‘independent of a medical person’”. (p385). This further emphasises, the role of accessing peer support and the provision of EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 55  information online, but also the importance of adapting communication styles in enabling SDM. Discussion The current review aimed to explore the perceived barriers and facilitators to engaging in SDM when making decisions specifically about paediatric surgery, looking at both the perspectives of patients and families, as well as those reported by clinicians working in the field. In support of previous research, the findings from this review and thematic synthesis identified similar themes centred around the provision of information, having a trusting relationship with professionals and the importance of time and frequency of discussions. Furthermore, language and communication, accessing peer support and being provided with an evidence-base and statistics when making decisions about surgery, were also discussed in relation to barriers and facilitators to engaging in SDM. It is suggested that families experience surgeon recommendations as helpful, with it being important for clinicians to be aware of the psychological and emotional experiences of clients during SDM. Previous research has also discussed patient related factors that may pose a barrier to engaging in SDM such as the perceived ‘unacceptability’ of asking clinicians questions and believing that it is the clinician’s role to make decisions. Reported clinician related factors have also included, assuming that the patient understands the information being given and being of the opinion that patients or colleagues would not want to engage in SDM. In support of previous research, the findings from this review suggest that clinicians may perceive parents to have adequate knowledge, which may hinder honest discussions and may prevent parents from considering alternate treatment options (Leu et al., 2021). For example, parents who had a predisposition to choose tonsillectomy for their child, were also EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 56  found to engage less in the decision-making process and were found to ask less questions in the study. It is suggested that clinicians may support clients during the SDM process, by providing opportunities for families to ask questions about their child’s care and specifically prompting and actively soliciting questions and concerns from parents (Carlisle et al., 2022; Atsaidis et al., 2023; Timmermans et al., 2018). Similarly, in interviewing children about their experiences of the perioperative period, clinicians asking children how they are perceiving the situation and if they had any questions, was also noted as a facilitator to engaging in SDM (Sjoberg et al., 2015). Findings from the current review also suggest that it may be beneficial to provide ‘frequently asked questions’ information to patients (Heath et al., 2016). In considering how clinicians view parental comprehension and desire to participate in SDM, the current review suggests that surgeons may underestimate parents’ preferences to share decisions, with parents desiring SDM but having little involvement in some cases (Links et al., 2020). Clinicians perceiving parents to have adequate knowledge was also reported to hinder honest discussions between clinicians and parents and was reported to prevent parents considering alternative treatment options (Leu et al., 2021). Although the current study also found that some families prefer surgeons to make decisions (Papiez et al., 2021), it is suggested that it is helpful for clinicians to gauge parental comprehension (Atsaidis et al., 2022), and to tailor decision-making roles to patient’s needs (Links et al., 2020). It was also suggested that surgeons should develop a good understanding of the patient’s social and cultural background in being able to align with the patients’ values, beliefs, and expectations (Loeff & Shakhsheer., 2021).  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 57  Since the COVID-19 pandemic, there has been greater utilisation of technology observed within the NHS (Hutchings, 2020) with the NHS long term plan, outlining how services will be redesigned with the aim of avoiding up to a third of face-to-face outpatient visits (NHS England, 2019). In considering the role of technology, the current findings report that families may feel excluded when health professionals discuss their child’s care, for example, during ward rounds and care planning (Smith et al., 2013c). It is also reported that parents do not feel involved in initial discussions regarding surgical candidacy and that parental views are often not sought until after the team have discussed treatment options (Heath et al., 2016). The findings from this literature review, suggest that increased opportunities for virtual communication, for example, having a virtual presence during surgical rounds, may enhance SDM (Carlisle et al., 2022). Parents also expressed a preference for being involved in decision-making from the ‘out-set,’ proposing an early and softer introduction of surgery as a possible treatment option (Heath et al., 2016).  In considering how clinicians engage with online platforms, suggestions were also made regarding bridging the gap between parents and professionals on social media platforms (Waite et al., 2022) and using social media posts to provide support and resources to prospective patients and families (Samanta et al., 2022) which, overall, enhance shared decision-making. Clinical implications  Adding to the existing evidence base, this review specifically focussed on understanding the reported barriers and facilitators to engaging in SDM in paediatric surgical settings. The findings have implications with respect to how clinicians communicate, share information and connect families with wider support networks. In addition, the results EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 58  highlight aspects of language and interpersonal skills impacting on SDM and raise the importance of considering the cultural and psychological needs of the family. Paediatric surgical teams may wish to consider SDM interventions and identify further training needs in engaging patients and families in decision-making. Clinicians may also look to consider how to increase involvement from the young person and their support networks within SDM, for example through including the paediatrician within discussions or offering young people and families the opportunity to engage in SDM, which may include virtual wards rounds. Taken altogether, it is hoped that these recommendations will enhance SDM practices and contribute to better outcomes for patients.  Strengths and limitations  To the author’s knowledge, this is the first systematic review of its kind to synthesise the literature on shared decision-making and the reported barriers and facilitators to engaging in shared decision when focussing specifically on paediatric surgical contexts. The findings arising from this review, support the existing literature which has explored barriers and facilitators to engaging in SDM, but contribute more contemporary findings when applied to paediatric surgery. The review benefits from implementing a qualitative design, allowing the author to synthesise rich data from multiple perspectives. A limitation of the review is that the research was largely conducted in the UK or USA. Owing to the differences in different healthcare systems worldwide, and access to healthcare, funding and resources, the findings are limited with respect to their generalisability. Similarly, when considering the heterogeneity of participants across studies, information relating to ethnicity and socioeconomic status was not collected, and in some studies, respondents were largely female. The study may therefore not represent the EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 59  experiences of some communities, particularly when considering health inequalities and barriers that may present for some patients and communities, in accessing healthcare, prior to attending for discussions with clinicians around surgery. Furthermore, it is acknowledged that across studies the paediatric sample covers a significant age range. In the study by Carlisle et al (2022) for example, the age of the population being studied ranges from 1 day old, to 13 days old, and in the study by Links and colleagues (Links et al., 2020), the population being studies ranges from 2 years old to 17 years old. Although in the study by Boss and colleagues (Boss et al., 2017), there is mention of surgeons sitting down with young people and colouring whilst discussing surgery, and providing comfort, there is little mention across studies of how SDM processes may be adapted for different age groups and whether there are unique barriers and facilitators that pertain to engaging children and young people in SDM  specifically. With the exception of the paper by Sjoberg and colleagues (Sjoberg et al., 2015) which focussed on child perspectives specifically, it is recommended that further research focusses on the barriers and facilitators to engaging children and young people in SDM, supplementing what is already known from parent and healthcare professional accounts. Conclusion Discussion and conclusions in relation to the main aim The perceived barriers and facilitators to engaging in SDM, as reported by clinicians, their clients, and their families, are not mutually exclusive. Patient information needs are highlighted by both clinicians and patients, where the importance of information being timely, clear, specific, and tailored to patients needs is acknowledged. With the rise in technology, clinicians were found to report that patients and their families often seek out EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 60  their own research. With this in mind, the review highlights the role professionals have in supporting families and young people to engage with online communities and patient groups and to direct families to trustworthy and reliable sources of information in preventing misunderstandings. Connecting families with other patients who have lived experience of going through the decision-making process, was found to be a facilitator to SDM and it is suggested that clinicians may be well positioned to bring families and patients together in sharing their lived experience. Specific barriers and facilitators, reported by patients and their families, centred around  becoming more involved in the decision-making process, for example, through clinicians providing  opportunities for families and young people to make decisions from the outset of their care and to have a virtual presence during surgical rounds (Carlisle et al., 2022; Heath et al., 2016). In involving young people and their families in discussions, it is important for the patient’s and families’ values and beliefs to be considered, which may also include inviting involvement from the wider family and systems around the patient, such as including other professionals e.g. community paediatrician in the SDM process. The importance of allowing adequate time and the frequency of discussions, is also reported by patients and their families, in which it is reported to be beneficial to the SDM process to repeat information, check understanding, and offer repeat visits to address patient queries and concerns. In conclusion, the findings from this systematic review, support the recommendations outlined in NICE guidelines (NICE, 2021) for enhancing SDM. Recommendations for intervention include offering pre-consultation interventions, Interventions to improve health literacy, preference/value elicitation, third person support EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 61  (involving other professionals/family members in SDM), patient activation (referring to a patients self-assessment of their understanding, knowledge and confidence in being able to manage their own health) and documentary intervention (collection of ongoing data, that is fed back into SDM, for example, considering findings from trialling different treatments or interventions). It is recommended that future research evaluates the effectiveness and impact of offering these interventions on enhancing SDM, which may focus on paediatric surgical populations. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 62  Chapter Three: Bridging chapter Chapter two presents the findings from a systematic review, which explored the reported barriers and facilitators to engaging in shared decision-making (SDM) for paediatric surgery as reported by clinicians, children and young people and their families. The current chapter will discuss the relevance of these findings, applied to cleft lip and palate services (CL/P) and decision-making for orthognathic surgery (OS). Four analytic themes and 11 sub-themes were identified through the process of conducting a thematic synthesis. Analytic themes included being aware of the patient’s information needs, enabling effecting communication, promoting access to support and being aware of the patients networks and support systems. In discussing these themes further, the importance of involving patients and their families in SDM and all parties feeling listened to and heard is stressed (Sjoberg et al., 2015). It is also raised that clinicians should consider the patients values, beliefs and cultural background when facilitating SDM (Waite et al., 2022; Loeff & Shakhsheer., 2021; Smith et al., 2013c).  Consistent with the themes identified in the systematic review, research exploring the involvement of young people with CL/P n decision-making for elective surgery, highlights the importance of hearing the young person’s voice and being mindful of external pressures impacting on young people during SDM (Bemmels et al., 2013; Kapp-Simon et al., 2015). Clinicians and parents were found to be influential during SDM of which young people reported to experience pressure from parents and feeling ‘left in the dark’ by professionals (Wogden et al., 2019). Furthermore, young people with CL/P have reported that they just “went along” with the decision for OS and perceived the discussion with clinicians about OS as a ‘recommendation for surgery,’ which was normalised as ‘routine’ and part of the EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 63  treatment pathway by professionals (Acum et al., 2018). These findings therefore bring awareness to external pressures influencing SDM and raise questions as to how clinicians consider these dynamics, when supporting young people in their decision-making for OS.  In further considering the influence of support networks during SDM, the results of the thematic synthesis also highlight the importance of being aware of the psychological wellbeing of patients and families; and being aware that families may seek out information online (Loeff & Shakhsheer., 2021; Lecouturier et al., 2015; Timmermans et al., 2018). With it being acknowledged that families and patients will regularly seek out information online, the importance of accessing reliable information is noted (Timmermans et al., 2018). Conversely, receiving information that is felt to be in contrast to the advice provided by clinicians, was reported to be a barrier to engaging in SDM (Lerret et al., 2016). It is therefore important to consider the role clinicians may have, in signposting and providing opportunities for patients to connect with online communities, as well as acknowledging the impact this may have on SDM for OS. In reviewing the literature surrounding CL/P and psychosocial factors, health inequalities impacting on access to CL/P services are also raised (Abbott et al., 2011; Zaluzec et al., 2019; Smillie et al., 2015). These include the availability of services within different areas, transport and childcare considerations, and consideration of language, literacy, stigma, and previous experiences of accessing services. Different cultural beliefs around surgery, may also present, including viewing CL/P as being a ‘gift from god’ and spiritual interventions and traditional medication being sought (Hasanuddin et al., 2023). It is therefore of importance, to understand how these factors may be considered by clinicians working with this client group, with a particular understanding of these factors and how they EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 64  may present at the transition period when supporting young people in decision-making for OS. In addressing the discussion around ethics applied to CL/P and OS raised in chapter one, as young people experience a shift in decision-making and enhanced responsibility, it is also important to explore how the balance may be maintained between autonomy, beneficence and capacity within SDM discussions at the transition period (Strauss, 2002). It is acknowledged that parents and or/caregivers have a significant role during SDM in the earlier stages of the pathway, however it is also of importance to explore, how these ethical dilemmas may be considered and thought about at the transition period whereby there is often delegation of responsibility to the young person.  Acknowledging the significant shift in decision-making roles that occurs during adolescence, the current study focusses on the transition period in particular and clinicians’ consideration of psychosocial and cultural factors. The current study also explores barriers and facilitators that may arise when supporting young people around decision-making for orthognathic surgery and associated ethical dilemmas that may present during the decision-making process.           EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 65  Chapter Four: Empirical Paper Empirical paper: Decision-making at the transition period: Widening the lens around psychosocial and cultural factors in cleft orthognathic surgery.  Abstract word count (Including key words): 259 Paper word count excluding tables: 7,998 Prepared in accordance with the requirements for submission to The Cleft Palate-Craniofacial Journal (see guidelines in Appendix 9)              EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 66  Abstract Objective: To explore what factors are considered by MDT professionals working in Cleft Lip and Palate services (CL/P) when supporting young people in their decision-making for orthognathic surgery (OS) and to explore how professionals understand and manage ethical dilemmas that arise. Design: A qualitative design was employed in which semi-structured interviews were conducted remotely with NHS staff working in UK cleft services. Participants/Setting: Nine participants were interviewed across four NHS cleft services. The sample consisted of three Speech and Language Therapists, three Orthodontists, and three Surgeons involved in decision-making for OS. Results: Thematic Analysis (TA) was undertaken to adhere to guidance by Braun and Clarke (2006). The researcher aligned with interpretive-constructive approaches, illuminating the experiences of clinicians in relation to surgery decision-making and consideration of psychosocial factors. TA revealed three key themes and seven sub-themes, including ‘navigating the decision-making process,’ ‘Team-Centric’, and ‘Health Inequalities impacting on access to cleft services’. Conclusions: The findings highlight the complex nature of balancing patient autonomy and beneficence during the decision-making process for OS whilst bringing awareness to factors that may pose a barrier to decision-making such as the presence of health inequalities, power dynamics and conditions of the MDT environment. The importance of optimising the shared decision-making environment and creating opportunities for liaison, particularly earlier on in the pathway, are discussed. It is recommended that future research explores EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 67  the impact of health inequalities on access to cleft care in greater detail, recognising those that are currently disadvantaged in their treatment journey. Key words: Cleft Lip and or/Palate, decision-making, Orthognathic Surgery, Young People                  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 68  Introduction A cleft lip and/or palate (CL/P) is one of the most common craniofacial conditions, reported to affect around 1 in 700 births per year (Yilmaz et al., 2019). In the UK, patients born with a CL/P are commenced on a 20-year treatment pathway in which early surgery is required at around 3-6 months old to close the gap. At the transition period (defined here as a period of significant change and adjustment, referring to young people aged 16+ whereby surgery decision-making is delegated by a parent and/or carer), young people may wish to elect for jaw surgery (also known as orthognathic surgery, ‘OS’). This is a procedure, usually performed once the young person has finished growing which involves re-aligning the jaws and is usually offered to patients experiencing adverse functional or aesthetic consequences. The process of decision-making for OS, requires surgeons discussing the advantages and risks to undergoing surgery and ensuring that the patient has a good understanding of what surgery may entail. OS has been associated with aesthetic and functional improvements, such as achieving greater facial symmetry and jaw alignment whilst it is also reported that OS may lead to improvements in speech, breathing, quality of life and psychosocial functioning (Ganoo and Sjöström, 2019; Pellby and Bengtsson, 2024; Cremona et al., 2022). Whilst post-operative outcomes are largely positively reported (Zamboni et al., 2019), risks to undergoing OS can include injury to salivary ducts, post-operative infection, blood loss, scarring, nerve injury, deterioration in speech and relapse (Khechoyan, 2013; Ferri et al., 2019; Dalston, 1984; Zaroni et al., 2024).  It is also important to consider the impact on education, employment and the social lives of young people in making a decision to undergo surgery. In interviewing young people EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 69  about their experiences of decision-making, young people raised how this required time out of work and impacted on them being able to partake in activities such as sports. Young people also shared that they considered taking a gap year to accommodate appointments and treatment (Acum, 2018). Careful planning with consideration of these factors, is therefore required, requiring a multidisciplinary (MDT) approach. Due to the prolonged nature of the treatment pathway, often involving multiple surgeries, treatments, and interventions; young people will be used to their parent and/or caregiver, making healthcare decisions on their behalf. The transition period is often the first time a young person is delegated responsibility for decision-making, of which the gravity and commitment associated with making a decision for OS is acknowledged (Acum, 2018). In acknowledging the commitment of young people to the treatment pathway, it is paramount for clinicians to have insight into the young person’s internal and external world, and to understand their motivations and expectations for surgery. This may be influenced to a greater of lesser extent, by social, cultural, and psychological factors, impacting on the shared decision-making (SDM) process. Whilst the need for OS is not limited to young people who have a CL/P, this group of young people are of interest, due to the longevity of treatments across their lifespan and with OS being offered at a point of transition whereby responsibility for surgery decision-making is often delegated to the young person. This empirical study aimed to explore clinicians consideration of psychosocial and cultural factors and associated ethical dilemmas that arise, when supporting young people in their decision making for OS.   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 70  Psychosocial factors and adjustment to Cleft Social stigma and psychosocial effects associated with CL/P are reported amongst adults and children, however the literature is reported to be largely inconclusive (Stock and Feragen, 2016; Stiernman et al., 2019). Some of the reported psychosocial effects associated with having a CL/P include experiencing difficulties with self-concept, attachment, interpersonal relationships and experiencing mental health difficulties (Hunt et al., 2005). In consulting with patients with CL/P and their families, patients reported to have experienced difficulties with self-confidence, initiating conversations and teasing. Amongst patients aged between 15 and 20, 73% reported their self-confidence to have been affected as result of experiencing a cleft, which rose to 91% amongst 20-year-olds (Turner et al., 1997).  In interviewing parents and clinicians about their views on psychosocial and educational outcomes for their child with CL/P, clinicians expressed concerns around how the young person might cope with ‘”difference,” low self-esteem and acceptance of themselves. Previous research has reported that clinicians wish to address psychosocial factors but feel restricted in doing so due to time limitations and feeling that they did not have the right environment, knowledge, or education to do so (Clarke and Cooper, 2001; Rumsey and Harcourt., 2004). Consistent with these reported barriers, is that none of the clinicians in the study were reported to have received formal training regarding psychological factors or adjustment to cleft, indicating further training may be beneficial (Stiernman et al., 2019). In exploring how Consultant Orthodontists view psychological support for orthognathic patients, 90% reported to feel that ‘some’ of their patients would benefit from a referral to psychology, with 41% referring approximately 10% of their patients for support. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 71  Similar to the findings from Stiernman et al (2019), 81% of Consultant Orthodontists reported to have no teaching or training in psychological assessment and management (Juggins et al., 2006) highlighting a need for further training. Ethical dilemmas associated with surgery decision-making. SDM is an essential and ethical obligation of Craniofacial Surgeons and extended members of the MDT when supporting patients in their decision-making for OS. Involving patients in the decision-making process not only ensures that surgeons are operating in cases where clients are invested in the procedure and recovery process, but this avoids operating in cases where the patient is satisfied with their appearance and is disinterested in surgery (Bennett et al., 2022). The Montgomery ruling outlines how patient’s should be supported to make decisions based on their values and preferences, being told what they “want to know” as opposed to what the doctor “thinks they should be told” however it is acknowledged that this poses a difficult balance for clinicians in promoting patient autonomy whilst acting in the patients best interest (Chan et al., 2017). Other ethical dilemmas clinicians may face include the patient, family and clinician holding different views around treatment and parental autonomy acting as a barrier to SDM (Bemmels et al., 2013). Furthermore, in a study looking at young people’s decision-making experiences around end of pathway cleft surgery, the researcher noted that once a malocclusion was pointed out, the young person questioned this aspect of their appearance (Acum, 2018) suggesting that there may be ethical considerations around informed consent and the decision-making process.  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 72  Objectives The current study aimed to explore what factors are considered by different MDT professionals working in CL/P services when supporting young people in making decisions around OS, whilst also exploring how different professionals understand and manage ethical dilemmas that may arise during these interactions. The current study addressed the following research questions: • How do clinicians from different backgrounds experience and manage ethical dilemmas when supporting young people in making decisions about elective OS? • What factors do clinicians consider when consulting with young people about OS? • How does clinician awareness of psychosocial factors impact on the decision-making process when supporting young people in decision-making for OS?  Ethical Approval Approval was sought from the Faculty of Medicine and Health Sciences REC at the University of East Anglia (Appendix 10) and Health Research Authority (Appendix 11). Local approvals were sought from research and development at the participating NHS sites.  Design A qualitative design was employed in which semi-structured interviews were conducted with Orthodontists, Speech and Language Therapists (SLT’s) and Orthognathic surgeons involved in the decision-making process for OS. A qualitative design was employed in allowing for in-depth exploration of clinician perspectives. An interview topic guide (Appendix 12) was developed following consultation with a Clinical Psychologist, EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 73  Orthodontist, Surgeon and SLT working in the field and was further role-played in ensuring that this flowed accordingly and felt appropriate for the setting.  Sampling and inclusion/exclusion criteria Three Surgeons, three Orthodontists and three SLT’s were recruited across cleft services at four of the five participating NHS sites. This sample size was decided upon in accordance with recent guidelines provided by Braun and Clarke (2013, p.50) which suggests recruiting 6-10 participants for small projects involving interviews. In considering the limited availability of staff working in cleft MDT’s and number of professionals in post, a target of three clinicians from each professionals group was set. Clinicians were eligible to take part if they had been involved in the decision-making process for OS, had access to Microsoft Teams and consented to being audio and video recorded. Clinicians were not able to take part if they did not work for one of the participating sites, did not consent to being recorded or if they did not have access to using Microsoft Teams. A template email (Appendix 13) and Participant Information Sheet (Appendix 14) was disseminated to clinicians in each team by the Principal Investigator. Following this, clinicians made contact with the Chief Investigator (HC) directly in expressing an interest in taking part in which they were followed up and consented into the study. Interviews  All interviews were conducted remotely by the Chief Investigator (HC) using Microsoft Teams. Interviews took place from August to December 2023. A semi-structured topic guide was implemented, and questions were framed around communication and team working, perceived barriers and facilitators to engaging in SDM, professionals understanding and consideration of psychological, social, and cultural EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 74  factors during the decision-making process and understanding and management of ethical dilemmas (see Appendix 12). Participants signed a consent form prior to the beginning of the interview, in which they consented to the interviews being audio and video recorded and were informed how their data would be used and stored. Participants were assigned a Participant ID and information was anonymised during transcription in maintaining confidentiality.  Participants Nine clinicians were recruited across four NHS cleft services. The sample consisted of three SLT’s, three Surgeons and three Orthodontists due to their significant involvement in decision-making at the transition period. Clinicians reported experience working in cleft services, ranged from three years to 20+ years. A third of the participants were male. Analysis Three major themes and seven subthemes were identified through the process of conducting a Thematic Analysis (TA), adhering to the protocol outlined by Braun and Clarke (2006). The researcher (HC) first listened back to each interview in familiarising themselves with the data, recording their Initial thoughts and reflections during the process. Following this, the researcher started line by line coding, identifying initial themes arising from the data. A coding framework was developed in defining themes and these were revised as an ongoing process (Appendix 15). During the course of defining EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 75  and revising themes, themes were brought to supervision and discussed. A table representing the final themes is provided below. Results Table 4: Themes and subthemes   Theme    Subthemes Theme 1: Navigating the decision-making process • Finding a ‘balance’   • External factors impacting on the decision making process. • Managing positions of power • The process of eliciting motivations for surgery.  Theme 2: ‘Team-centric’ • Opportunities to foster team communication.  • Valued contribution of MDT members Theme 3: Health Inequalities impacting on access to cleft care. • Equity and barriers to accessing care 1. Navigating the decision-making process Across interviews, it became apparent that many aspects of the decision-making process elicited feelings of discomfort for clinicians. Clinicians reported to experience ‘internal conflict’ when balancing autonomy and beneficence, or when patients presented to clinic having been ‘told’ OS was routine. Clinicians expressed the importance of understanding the young persons motivations for surgery and voiced discomfort in being asked to operate when these reasons were not clear.  In engaging young people in SDM and eliciting motivations for surgery, clinicians were aware that young people may not ‘readily’ volunteer their reasons for wanting to proceed. Clinicians spoke of exploring concerns that may be ‘unvoiced’ such as those related to aesthetic or cosmetic reasons. Clinicians were also mindful that the presence of lots of EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 76  professionals in one room, and layout of the room (e.g. positioning of the dental chair) could create power dynamics and pose a barrier to SDM.  1.1. Sub-theme- Finding a ‘balance’: As clinicians spoke about the transition period, acknowledging the delegation of responsibility from parent and/or carers to the young person being positioned as decision maker, themes emerged around balancing patient autonomy and acting in the patient’s best interest (beneficence). Clinicians acknowledged a shift in paternalism but were mindful of their role and responsibility in making the ‘final decision.’  I’m constantly challenged, because of the nature of our work. It’s a constant challenge to try not to be to be paternalistic about things, but then there are some times when you just have to say no and so finding the right balance. (Participant 7). This was further expanded on in the following quote, in which one clinician referred to the decision-making process as deciding between ‘can’ vs ‘should’. Can you do surgery? Yes, but should you do surgery? And I think that's always important, no matter what type of surgery you're doing. (Participant 5). Clinicians also shared their concerns around not wanting to make a situation ‘worse’ and worrying if they had done the ‘right thing’, of which the desire for ‘certainty’ was also noted. It's not my own ego, but it is hard because you're like, have I done the right thing operating on her and I, you know, she has good results. (Participant 5)  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 77  What are the potential complications if I do something that leaves them worse off for something that isn't, you know, required to save their life or then... then that's…that's the responsibility that I have, or our team have. (Participant 7) I’m probably more risk averse than many of my younger colleagues would be, but I would rather wait until a patient is able to clearly say yes or no, rather than you know, going ahead and say, well, let’s just try it, lets just see how you go (Participant 3). On the theme of ‘finding a balance’ clinicians also shared their experiences of supporting patients from different cultural and religious backgrounds. Below, a clinician shares their experience of working with a patient who identified as a Jehovah’s Witness, of which the clinician accessed an advocate in supporting them and the patient to understand each others’ views around the risks involved in proceeding with OS.  We had a Jehovah's Witness advocate and that was very helpful in terms of helping me understand why it was important as well, so... because it's very easy to say, well, this is my belief and...I don't understand why you can do this to shift to.... It's not about my belief, although you do have to acknowledge that your actions could impact on me...so there we did have a bit of a conversation about, but what does this mean to me? What does this mean to me If you were to die on the table? (Participant 2) In sharing experiences of supporting families from different cultural backgrounds, a clinician made reference to families who position clinicians as ‘expert’. In discussing working with a family from a Roma background, the following example was shared:  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 78  There are some groups that still regard sort of anything a health professional says as they are the health professional It's not my place to challenge it, I actively encourage them to challenge it, but it doesn't sit comfortably with some groups. (Participant 3).  Clinicians also expressed discomfort when young people presented to clinic having been told they ‘need’ OS or that this is just the ‘next step’ in the treatment pathway. often you hear well, I've just been told I need surgery and I don't want to operate on someone who's only having this done because they've been told they need it. So, it's really important to me to kind of see what bothers the patients, what their concerns are and see if surgery is going to help with those. (Participant 5) The presentation of co-morbid mental health difficulties, and who holds responsibility for supporting patients with their mental health, was also highlighted as an ethical issue with respect to ‘maintaining a balance’ and keeping people safe.  Severe depression, which is triggered by cleft that's still severe depression that needs treating in mental health services not in cleft services. So sometimes there's a bit around ...boundaries... there that... where do we sit and that and how do we keep patients safe? (Participant 2). In discussing body-dysmorphia, the clinician raised how it may be difficult to ascertain whether surgery will achieve the desired outcomes of the patient, raising an ethical dilemma.  You've got to, you know, are you dealing with the body dysmorphia...? Probably. And it's harder to say that when you're doing cleft because there is actually a physical deformity... that you have congenital deformity…but you do still get patients that EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 79  have altered perception and if they have altered perception...is doing surgery actually going to give them a result that they will be happy with? (Participant 2). 1.2. Sub-theme - External influences impacting on decision-making: As families and young people increasingly seek out health information online, the pros and cons to accessing information online is debated. Clinicians acknowledged that online communities and social media platforms may create a space for patients to come together, share narratives and ask questions, however concerns around the regulation of online platforms were raised. Clinicians were also aware of the possibility of misinformation being shared online, and noted the impact that social media platforms can have on young people’s sense of self and appearance.  Social media platforms such as TikTok and Instagram were reported to influence young people’s perspectives on their appearance, bringing awareness to asymmetry and desire for surgery for aesthetic reasons.  Selfies aren’t too bad, but it's more when people take photographs of you, that's when you see the asymmetry, because it's like you're looking at another person, not a mirror image. And your asymmetry... if you think about it... that's your midline. If you're over there. Yeah. So, it's only that much difference in a photograph. You're over there. So, it's actually that much different from what they're used to seeing. So, photographs are double. They magnify the difference. (Participant 2). I wonder whether that's just, you know, the Instagram generation, if you like, the people who are much more focused on faces than perhaps they ever have been. Boys, girls alike, you know, they often do want to go through treatments to average out their face to balance out their face. (Participant 6).  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 80  Concerns were also raised around online platforms being unmoderated, in which patients may be subject to misinformation, or may use online platforms to express dissatisfaction with their care or experiences with services and professionals which may adversely influence other patients and create feelings of discomfort for professionals. Standard concerns about things being unmoderated, advice that we wouldn't necessarily recommend is being shared quite readily without anybody there to say, oh no, no, don't do that. (Participant 8) And so, they just kind of offloaded in this group and its sort of hard to read because you can't then as a medical professional contact that parent and say, ohh, I heard you were unhappy about this. Sorry about that, because there has to be those boundaries of if they want to speak to us, to complain about it, that's a different matter. (Participant 8). In being aware of this, clinicians spoke of signposting patients to the British Orthodontic Society and patient experience videos in accessing reliable and up to date information.  We do try to stop patients accessing. You know non sanitized, you know, Internet publications of whatever sort. We try to say, listen, if you're gonna read anything online, make sure it's sort of British stuff. Orthodontic society cleft world stuff so that your as sure as you can be that you're getting what we would be considered as our treatment modalities rather than what might be happening overseas or somewhere else and whatnot. (Participant 6) EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 81  Although concerns were raised with respect to seeking out health information online, patient communities and social media platforms were also noted as being a helpful for patients in terms of hearing peer experiences of undergoing OS. But I think there's a there's a sense of it's good to have some other agency or some other group that speak to the patients or inform the patients about that which is useful in terms of they're getting a view from some other forum. I know one or two patients who've done who've got their information from TikTok. You know, they followed someone who is, who has shown their experiences on TikTok, of having had the surgery done. (Participant 4).  1.3. Sub-theme -The process of eliciting motivations for surgery: Psychological safety is highlighted as a central component in patients feeling able to disclose their concerns during SDM, of which clinicians were aware that understanding the young persons concerns, many involve ‘picking out’ or ‘teasing out’ motivations for surgery.  Under all that, there are reasons why people probably would like to have the benefits of having jaw surgery. But I think it's really important to kind of pick that out. You always want somebody…I mean, that's just how it was trained. You always wanted to get it out of the patient. Why they... why they want surgery. (Participant 5). Another clinician also describes this process as ‘deep diving’ into the ‘layers’ of concern. Really deep diving into…the burden that these patients carry and the sort of layers of not dissatisfaction but the layers of concern related to appearance and how they’re perceived and how many of those are things that we can improve and how those are EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 82  related to things that we look at and go, I could do you the best bite and the best jaw surgery, but I sense you're still not going to be entirely happy with things, and it's about sort of riding out those decisions. (Participant 3). One of the reasons clinicians felt patients may be more hesitant to share their concerns, is anticipating that patients feel it is not acceptable to proceed with surgery for aesthetic or cosmetic reasons, with gender differences also being acknowledged with regards to pragmatism, awareness of emotions and expectations around surgery.  There is a perception within the NHS that you can't really ask for things for an aesthetic basis. It's all got to be functionally related…. (Participant 3).  You know, it's a cosmetic thing, why should I have access to cosmetic treatment?'  (Participant 2)   they've boxed it because as a bloke they shouldn't be going down that pathway of caring what their nose looks like, of being vain, whereas the girls handle it a lot more. They're just much more with it. They're just more. Yeah. Don't like my nose, I want something done about it. I have the right to want something done about it. Why shouldn't I have a good nose? You know., so they’re... in some ways... they are... are much more emotionally in-tune and pragmatic about what they want than the boys are, the boy's pragmatism boxes them in. (Participant 2). Asking open questions, and the importance of using language that does not imply positionality towards surgery, was highlighted as an important factor in supporting young people to make decisions and avoiding creating feelings of difference or ‘dissatisfaction’ with appearance. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 83  You could have someone who's quite happy and then you tell them... that they're not right. So ...you're creating a problem and... that that is challenging. How do you? What language do you use? rather than saying right/wrong, you might say ‘your top teeth are behind your bottom teeth. Are you happy with that appearance? Can you function OK,’ not, it is wrong, and moving away from that concept of they as a patient are wrong in any way or not normal (Participant 2). Concerns raised around not creating feelings of difference, were also highlighted in the following quote.  I'm really cognizant of not creating…that awareness that, oh, maybe I look different. Is there something wrong with me? So, I can distinctly remember seeing a young girl, you know… in…and she had no issues with how she looked. She had brilliant confidence, et cetera, and I'm very cognizant that I don't want to create something in her mind. (Participant 5) In exploring the ‘layers’ of concern, and ‘unpicking’ patients understanding and motivations for surgery, clinicians also spoke about the role of psychology within the MDT.  but having the psychologist on board has been utterly invaluable because they've been able to sort of dissect out where the areas of concern are rather than kind of, I'm unhappy with everything they've been able to dissect that... well… what elements that are specifically related to your cleft are you unhappy with? what elements like to talk about with the surgeons? What elements are you worried about with your speaking? What elements do you not like about your teeth? and they can break it down. And so, the patient comes back sort of prepared with more specific questions (Participant 3).         EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 84  The role of psychologists was also raised with respect to supporting clients with autism or learning needs and understanding capacity.  so I think that is tricky and then you know you every now and again you do you get a patient with special needs, with perhaps ASD or something like that and then picking apart their cognition of what they're letting themselves in for understanding their capacity for decision-making that I think that that is that is a real challenge but that's a really small subset of our patient group. Certainly, those guys I think we would ask the psychologist to help us really with those decision-making process. (Participant 6).  1.4. Sub-theme -Managing positions of power: Whilst trying to elicit motivations for surgery and engage young people in SDM, clinicians reflected on both the advantages and potential drawbacks of coming together with other professionals and the patient in one room. Professionals acknowledged how meeting as a team with the patient provided helpful opportunities to have discussions with colleagues and for patients to observe that the decision-making process requires significant thought and care. In contrast, professionals reflected on how the presence of lots of professionals in one room may feel ‘intimidating’ and ‘overwhelming’ for patients, resulting in them being less likely to disclose motivations for surgery. It was also raised that the ‘modern day MDT experience’ may bring back memories for clients of earlier challenging times in their childhood. we do get returning adults who perhaps had a challenging experience as kids and they find that perhaps the MDT environment is a bit overwhelming despite the fact actually that they may... they may see the psychologist beforehand and they prep them for what a…modern day MDT experience is like, but still they say, listen, I can't EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 85  cope with that, that's.. that brings me back to my childhood, which was, which was challenging (Participant 6). If you have, you know, like 3 consultant surgeons and a couple of trainees and a consultant orthodontist like, you're not going to bare your soul and be like, oh, actually, I'm really subconscious about this You'd just be like, I'm here to talk about surgery, so I think taking the patient out of that environment and having a you know, less intimidating chat is really valuable, I think. (Participant 5) The presence and positioning of the dental chair was also highlighted in relation to creating power dynamics between professionals and the patient, of which clinicians spoke about the particular placement of the chair behind a wall and importance of having this positioned at eye level with patients. So those clinics do happen with them sitting down and everyone else towering above, and I wonder if that can have a negative impact or a positive one, not you know, the sort of feeling lower down than everyone because they're sat down, but the fact that everything is in the same room and everyone's hearing the same thing. (Participant 9) and a dental chair which is behind the kind of half high wall so the patients don't walk on and see a dental chair, they come in and they seated area and we sit them down and we… we make sure it's that sort of...subtle things, but we make sure that we're always at eye level with them, so that the seats that the patient sit on are slightly higher than ours. So that when we are looking, we're on an equal level and we space it to make it sort of as informal as possible. (Participant 3) EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 86  Whilst the drawbacks of the MDT environment are acknowledged, conversely, the MDT environment was felt to provide opportunities for discussion and for everyone to hear the same thing.  We have everyone in the room at the same time. Now the advantage of that is we can have around the table discussions where we can thrash out all these things. (Participant 7) I think it's useful for them to see that we have really thought about it, and we've had a proper a discussion about it on the other side of things. (Participant 7). Whilst holding both the advantages and challenges to meeting as an MDT in mind, clinicians were mindful of the need to create psychological safety. It's gonna be about psychological safety isn't it, if they don't know you, why? Why they’re going to discuss it? They don't know how it's gonna land. And they've made... sometimes they’ll have made assumptions. (Participant 2).  The following quote illustrates the importance of patients having a safe space and creating psychological safety, in being able to understand the information that is given and feeling able to ask questions.   And you know, the patients came back and said to [clinician] why are they feeding me wafers... if I'm going to be asleep during an operation and she'll say no, it's not like a pink wafer. What they're talking about is a bit of plastic that fits between your teeth. And I've gone. Oh, and the fact that they haven't felt sort of comfortable enough to ask that question reveals quite a lot about how the conversation goes, and EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 87  you know, there is so much that we probably think we're doing right, but without asking the patients, we don't know.  (Participant 3).  Theme 2: “Team-centric’: Clinicians reflected on the nature of having centralised and bespoke teams, speaking to the implementation of recommendations raised in the CSAG report. Opportunities for liaison with colleagues differed between teams and was influenced by team-set up. Some clinicians felt they had many opportunities to liaise with their colleagues, speaking of the advantages of being able to have more ‘ad-hoc’ discussions. Other teams in contrast, desired more opportunities for team liaison and reported that there were not many opportunities to liaise, resulting in delays to updating patient facing information and discussing feedback. Within these discussions, equity across services, and awareness of health inequalities and barriers to accessing cleft care, were noted. 2.1.Sub-theme- Opportunities to foster team communication: Clinicians commented on the advantages of being able to have ‘ad-hoc’ conversations and liaise with their colleagues, whereas other teams relied more heavily on the support of community-based colleagues and connecting remotely.  the key to a strong and functional team is that you do have the opportunities just to have corridor conversations and that you do bump into your colleagues. (Participant 6) Very dispersed team in that we rely really heavily on the support of our community-based colleagues. We've never had the funding all centralised, so we have very good links across primary and secondary care and that’s really, really important in terms of the way lots of things we do are run (Participant 1).  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 88  Other clinicians felt there could be more opportunities for liaison in-between clinics, emphasising the importance of having opportunities to meet together as a team. You know, we don't really and actually it would probably be good if we did, because there are a few things that we need to think about and so like, we have a leaflet that we think needs updating and that's almost a year and nothing has happened and probably because we don't have any platform for meeting up in between those clinics. (Participant 9) I should make more time to try and set up a way of discussing people… patients... difficult patients with other colleagues because it means… because of the very specialized nature of it…you have to go out of region to find someone who really knows what you're talking about…so that's ..that's one of the things that that I would like to develop (Participant 7) 2.2. Sub-theme-Valued contribution of MDT members: Clinicians highlighted the significance of building relationships with patients across the treatment pathway, of which the role of the Orthodontist was particularly highlighted, due to the level of interaction they may have with families and young people.  I think, being slightly biased, the orthodontist having potentially known the child... or the patient rather, since they were a child, often may have… quite an insight into that patients…life, their thoughts their, you know their personality and so sometimes the orthodontist can ..can take a bit more of a lead (Participant 6). The shift from paternalism is also noted within teams, of which a clinician describes the nature of the MDT as ‘everybody is a clinic lead.’ EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 89  I'd very much hate to work in a team where, for example, the surgeon led everything and was, you know, was seen as the clinical lead when everybody's a clinical lead because everybody's part to the service and to the input to the care is important. (Participant 6).  Although the value of each speciality within the MDT is noted, themes arose around how SLT’s view their role, and how the role of SL’s are viewed, in relation to the surgery decision-making process. I think we have quite an important role to play in, in, in different ways. So, I think, I think we have an important role to play clinically, in terms of our specialism and in terms of advising. (Participant 1). if it was to go in order of a contribution and impact on that patient’s journey, then I think probably we would maybe come bottom of the pile. I think possibly, and I think feel like perhaps our psychology team and orthodontists have even more involvement with those patients than we do. (Participant 6) Speech and language therapy colleagues tend to do the assessment and just feed in and give some general advice around risk to speech to the patients and… and that's about it. They don't have a huge impact otherwise... and not very much direct influence on treatment planning or what we do with the surgery, I suppose. (Participant 4).  Theme 3: The impact of Health Inequalities on access to cleft care. Whilst reflecting on the nature of centralised and be-spoke teams, clinicians were mindful of the various EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 90  barriers patients may face in receiving care. Clinicians raised issues relating to equity across services, financial and travel implications, and the provision of services in different regions. 3.1. Sub-theme-Equity and barriers to accessing support: In speaking to health equalities perceived to impact on access to services and cleft care, a clinician highlighted the requirements placed on patients, precluding attending clinic. In particular, the clinician highlights the expectation that young people will be able to access a dentist regularly in promoting ‘good oral health,’ which may impact on being able to attend clinic.  I don’t see the same mixture of backgrounds in our cleft orthognathic than I would expect from kind of. It’s in the general population now. That may be because there are so many other factors that preclude them actually turning up to clinic. You know, you think of all the hurdles that we put in place. They’ve got to be able to attend appointments, they’ve got to be able to have… they’ve got to be able to see a dentist on a regular basis to have good oral health. They’ve got to be able to engage with the communication from the hospital from the admin team, inviting them to appointments, and I would say all those things…exclude quite a significant proportion of people that we look after (Participant 3).  Consideration is also given to childcare, financial and employment implications that may impact on being able to access healthcare, highlighting the various barriers that may exist, prior to surgery decision-making. And we select patients to be seen there by post code and so many of them have said there's no way I’d have got up to the (clinic location). You know, I can't do it with picking up the other kids or getting there or even the bus, even though transport costs are reimbursed on the day it's actually having… It's down to having that EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 91  amount of disposable income that you can pay out bus fares for a parent and child. (Participant 3) maybe that's through lack of, you know, opportunity to access our care. You know, I think probably families who are in those situations that, their need to be at work, for example, and they're their ability to get away from work, to bring their kid to treatment. It is definitely much more of a challenge for some than others. (Participant 6).  This was also discussed in the context of the transition period, and how receiving treatment may impact on education, employment in addition to impacting financially on the young person if being required to travel as a prerequisite to having OS. When you're a teenager, often they look at it as, oh, I'm going to miss a session of school every six weeks. That's not such a bad thing, but when you are putting yourself under pressure for A Levels or going to university or starting an apprenticeship, and you're looking at whether your employer is going to let you out of work for such regular times, or whether it's going to… leave or how you're going to get there independently and the cost of travel, there are lots of different factors on somebody's desire to do all of that as a pre requirement to the jaw surgery. (Participant 3).                   In hearing the narratives from clinicians who work across different regions, it was acknowledged that processes may also vary between sites, which may include the advice and guidance provided and availability of professionals in clinics. In reflecting on equity across services, clinicians raised the following points: EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 92  The other is a lack of consistency in approach across the whole of the [region]. So, there might be inequity in terms of that service because they may not hear the same thing from my local, you know like from my colleagues who do the clinic in (different locations). (Participant 4).  There's a bit of a mixed economy in that regard. Some the clinics I will go to or my colleague who also does orthognathic surgery, goes to and then there will be other clinics that there is no maxillofacial orthognathic surgeon attending. So those patients would most likely have to travel to [other site location] to be seen by the surgeons to get the advice about what they think is possible. (Participant 7). Discussion Key findings The findings offer insight into the experiences of clinicians when supporting young people in their decision-making for OS, of which three main themes and seven sub-themes were identified through conducting TA. Themes included, ‘navigating the decision-making process’, ‘team-centric’ and ‘Health inequalities impacting on access to cleft care’.  Discussion in relation to the main aims TA revealed a shared experience of ‘internal conflict’, particularly arising from surgeons when being positioned as the final decision maker. Clinicians described the challenging nature of balancing patient autonomy and beneficence, expressing concern around ‘doing the right thing.’ This was underpinned by a desire for certainty in the decision being made, of which clinicians experienced discomfort when positioned as ‘expert’ or when young people presented for OS having been ‘told’ they need surgery. This is consistent with EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 93  the shift in paternalism to SDM and the Montgomery ruling that ‘patients should be told what they want to know, not what the doctor thinks they should be told’ (Chan et al., 2017). In contrast, this raises a particular challenge for clinicians, when trying to maintain a balance between autonomy and beneficence, exacerbating feelings of discomfort and concerns around ‘doing the right thing’ when positioned as final decision maker. Previous research exploring the decision-making experiences of young people, suggests they feel ‘tied’ to the treatment pathway, therefore ‘going along’ with surgery as this is viewed as being routine (Acum, 2018).’The literature therefore supports the narratives of clinicians in this study, in that young people may present to surgery, feeling that this is the ‘next step’ in their care, creating feelings of discomfort and internal conflict for professionals. The desire of clinicians to promote SDM and for young people to express a degree of certainty around their motivations for surgery, however, sits in contrast to the experiences of young people, who may feel that taking this position, is ‘burdensome’ and therefore they wish to delegate this responsibility.  Clinicians acknowledge the shift in paternalism, often adopting a view that this should be avoided in order to promote SDM. It is however noted that patients may value clinical paternalism or authoritarianism in some contexts, as this may reduce uncertainty, unpredictability and may relieve the patient of taking responsibility for understanding and responding to a frightening situation (Cole, 2013). This therefore speaks to the narratives shared by clinicians, around balancing patient autonomy and beneficence.  In responding to this ethical dilemma and experience of discomfort, many factors were found to mitigate these experiences. Feeling held and contained within the MDT, and the importance of being able to have ‘ad-hoc’ discussions and opportunities for liaison was EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 94  felt to be a facilitator to the decision-making process. Similarly, clinicians felt the input from clinical psychologists was particularly beneficial in trying to understand a young person’s motivations for surgery, or when questions arose around a young person’s capacity to make an informed decision. Previous research suggests that clinicians do not feel they have the right environment, knowledge, or education to address psychosocial factors with their patients (Clarke and Cooper, 2001; Rumsey et al., 2004). Consistent with this, clinicians highlighted how the SDM environment, where the patient is joined by multidisciplinary professionals in one room, can be intimidating and may pose a barrier to SDM. This was also reported by young people in sharing their experiences of decision-making (Acum, 2018). Clinicians acknowledge that patients may experience dissatisfaction with their appearance, underpinning motivations for surgery, however this can sometimes be difficult for clinicians to elicit due to the nature of the environment in which the discussions around OS are had. Clinicians spoke of reducing the number of professionals in the room and trying to mitigate power dynamics by making modifications to the environment that promote SDM. Due to this, it is often the case that patients share information in their consultations with individual MDT members, highlighting the importance of professionals having opportunities to liaise with the team.  Socioeconomic factors have been reported as a barrier to accessing healthcare, in which financial implications associated with travelling to appointments have been found to impact attendance (Stock et al., 2018). Consistent with this, clinician narratives highlight several barriers to accessing care, including the need for patients to travel to different sites and the associated financial, education and employment considerations that this involves. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 95  Although be-spoke clinics offer opportunities to access care closer to home, in accordance with the CSAG recommendations, clinicians voiced inequity between services, describing this as a ‘mixed economy’, which may contribute to health inequalities.  Clinicians were mindful that patients may experience co-morbid mental health difficulties and were conscious of not proceeding with OS when this was unlikely to meet the patients’ expectations. Social media platforms were noted as a significant influence on patients’ perception of themselves and their appearance and during the SDM discussions clinicians were aware of not ‘biasing’ the young persons decision or creating feelings of dissatisfaction in their use of language.  Clinician awareness and consideration of cultural factors differed across professional groups, with some professionals sharing that these considerations had not arose in their work and could be considered more by the team. In contrast, where cultural factors were acknowledged, this centred around paternalistic approaches and accessing an advocate in managing decisional conflict.  Critical evaluation The empirical study benefits from having representation from three different professional groups working in cleft services across a variety of geographic regions. Professionals were therefore able to speak to the similarities and differences in the set up of their teams and acknowledged to a lesser or greater degree, health inequalities impacting on access to care. Professionals were also consulted during the set up and design of the project, including seeking feedback on the interview topic guide. Clinician feedback on taking part in the study was largely positive, bringing awareness to different areas of their work that they may wish to consider further with their teams.  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 96  The chief investigator (HC) was aware of their role as a Trainee Clinical Psychologist throughout the study and was mindful that this position may have influenced participant disclosure around psychological factors or narratives shared around the role of psychology within teams. In being aware of this, a reflective diary was kept, in enhancing reflexivity and considering positionality and influence during the course of the project.  It is acknowledged that only five out of a possible 12 cleft teams partook in the study, largely due to the scope of the thesis project and time constraints, however due to the nature of how some of the included cleft centres are set up and the role of different professionals within these teams, clinicians had involvement or worked in collaboration with  other centres. Owing to the reported differences across teams, the findings should be considered in the context of how teams operate and their unique qualities.  Clinical implications The need for commitment associated with making a decision to undergo OS is highly recognised in previous literature and by clinicians who participated in the study (Acum, 2018). Having an awareness of the factors that may facilitate or pose a barrier to the decision-making process is paramount, which includes considering the impact of health inequalities, communication style, the provision of information and being aware of psychological, social, and cultural factors that may influence decision-making.  At the transition period in particular, it is important to consider how the delegation of responsibility in decision-making is experienced by young people, and to have an awareness of external influences that may influence decision-making; such as the impact of accessing social media, online communities, and experiencing pressure from support systems. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 97   The environment by which young people and clinicians navigate the decision-making process also warrants attention, of which it is important to consider power dynamics and psychological safety in eliciting motivations for surgery and reaching a ‘collaborative’ decision. With this in mind, having regular opportunities to liaise, discuss and seek support from colleagues in the MDT may enable SDM and reduce feelings of discomfort, particularly for those that are positioned as the final decision-maker. It may also be beneficial, to foster opportunities for liaison earlier on in the treatment pathway, in paying particular consideration to the transition period and experiences of young people at this life stage.   Further research Although the present study brings awareness to health inequalities that may preclude patients from accessing services, as this was not the focus of the empirical project, this arguably provides a limited account of these experiences. As noted by professionals, this is a topic that understandably warrants further research and resources to be allocated. Developing a greater understanding of the factors that may preclude patients accessing care, and increasing awareness of health inequalities, will allow services to consider how these may be addressed. Further research may also wish to explore how teams consider and incorporate SDM models at different stages of the treatment pathway.   Conclusions The current study provides insight into the decision-making experiences of clinicians and highlights how awareness of psychological, social, and cultural factors may differ amongst professionals and may influence the decision-making process. The findings also EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 98  bring awareness to aspects of team working and health inequalities that may impact on cleft care, warranting further discussion and consideration of the factors that may preclude patients attending clinic.                           EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 99  Chapter Five: Extended methodology and reflexivity   The following chapter will provide supplementary information regarding the empirical projects design and methodology, researchers epistemological stance and will provide a discussion around personal reflexivity and ethical considerations. The empirical study employed a qualitative design in exploring the experiences of clinicians involved in surgery decision-making. Merriam (2009) in describing the use of interpretive and constructivist approaches, defines these as being designed to study the “multiple realities, or interpretations, of a single event” (p9). In accordance with interpretive-constructivist approaches, adopting this methodology and stance allowed the researcher to gain a rich, in-depth understanding of the individual experiences of different MDT professionals in relation to their specific roles within the cleft MDT, but also provided insight into the personal perspectives of individual participants in supporting young people in their decision-making for orthognathic surgery.  Previous craniofacial research has utilised qualitative methods in exploring the experiences of young people and their families (Acum, 2018; Safarikova, 2021) of which it is highlighted that qualitative methods may be more appropriate when considering the challenges associated with recruiting larger samples (Stock et al., 2018). This is particularly applicable, when considering the structure and intimate relationship of cleft MDTs, of which there may be a limited number of professionals available to interview from each discipline. Eligibility Criteria  Participants were recruited if they were a Speech and Language Therapist (SLT), Orthodontist or Surgeon currently working in a Cleft MDT at one of the approved NHS sites. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 100  Clinicians were required to have experience of being involved in the decision-making process for orthognathic surgery and 3 clinicians from each professional background were recruited. Clinicians needed to have access to Microsoft Teams and consent to audio and video record for the purposes of transcription was also required. Clinicians were not able to take part if they worked outside the NHS or if they worked for a private organisation. Selection of participants Participants were recruited via purposive sampling with 9 participants being recruited across 4 sites. The nature of the project being a ‘multi-site’ project, meant that professionals taking part, represented different geographic areas and cleft teams. A Principal Investigator (PI) was appointed at each individual site, who took responsibility for disseminating a participant information sheet (PIS) and email template to their respective clinical teams. The PI’s role was essential to the recruitment of clinicians, in that the PI’s were in most cases, embedded in their clinical teams and able to have direct discussions with their colleagues about taking part in the study. Upon clinicians expressing an interest in taking part, the Chief Investigator made contact with the participant directly by email, ensuring that a copy of the PIS had been received, and that any questions were sufficiently answered. A date and time to meet for an interview was then arranged via Microsoft Teams. A consent form was completed and returned by email prior to interviews commencing (Appendix 16) and the researcher provided further opportunities to ask questions at the beginning of the interviews. Additional verbal consent was gained in relation to recording and transcribing interviews.  Data Collection EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 101  Interviews were conducted remotely via Microsoft Teams at a time convenient for clinicians. 90 minutes were allocated for each interview, which included time to answer questions, obtain consent, and offer a debrief at the end of each interview. All clinicians took up the opportunity to reflect on taking part in the study, of which they expressed curiosity regarding dissemination and implications resulting from the project and spoke about the benefits to taking part. A semi-structured topic guide was implemented, which was developed and reviewed by a Clinical Psychologist, Surgeon, Speech and Language Therapist and Orthodontist working in cleft settings prior to the study commencing (See Appendix 12).  Ethical Approval  Ethical approval was obtained from the University of East Anglia and Health Research Authority (HRA). Subsequent local approvals were obtained from the research and development teams (R&D) at 5 participating NHS sites. Research was conducted in line with the British Psychological Society (BPS) code of ethics and conduct (BPS, 2018). During the initial stages of designing the project, the Chief Investigator (HC) and primary supervisor had the opportunity to attend a Clinical Excellence Network (CEN) meeting which was attended by Clinical Psychologists working across cleft services in the UK. The Chief Investigator and Primary Supervisor also presented at the East of England MDT cleft meeting. The project received a favourable opinion from MDT members across both groups, in which CEN psychologists gave their support for the project and Speech and Language Therapists advised of including their professional group in the study.  Informed consent  The PI for each site, first made contact with the clinicians working in their team through disseminating an email template and PIS. Following this, clinicians directly EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 102  expressed an interest in taking part in the study and were followed up accordingly. Written consent was obtained prior to the interviews commencing and professionals consented to being audio and video recorded for the purposes of transcription.  Confidentiality  Anonymity was maintained throughout the transcription process through assigning participant ID’’s to each participant. Personally identifiable information was removed from interview transcripts and data was stored securely on UEA OneDrive, adhering to the GDPR regulations (Information Commissioner’s Office, 2018) Distress It was possible that the nature of discussing ethical dilemmas and aspects of the decision-making process for surgery, may have been challenging for clinicians. Clinicians were offered a debrief at the end of their interview, in reflecting on their experiences of taking part in the study. Although the need to access further support did not arise during the study, options for further support would have included seeking support from within their team from the cleft team psychologists. Risks/Benefits/Burdens It is acknowledged that taking part in an interview for the study, required clinicians to protect 90 minutes of their time. Understandably, with the pressures facing many clinical teams within the NHS, this may have contributed to workload. In obtaining capability and capacity approval from the individual R&D departments, it was deemed that the clinical teams had capability and capacity to accommodate the study, and the chief investigator was happy to remain flexible and accommodate interviews on a day and time suitable for EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 103  clinicians. Feedback from the interview process was largely positive, with clinicians sharing that this provided opportunities to reflect, and to consider different themes in relation to their work. Clinicians were also offered a £10 Amazon e-voucher as a token of appreciation for taking part. Thematic Analysis (TA), positionality and reflexivity  Data was analysed and interpreted using Thematic Analysis (TA), in which the guidelines for conducting Thematic Analysis outlined by Braun and Clarke (2006) were followed. Thematic analysis was chosen due to the flexibility in its approach, which means it does not stem from a specific epistemological or theoretical position. This approach, as noted by Braun and Clarke, is therefore compatible with a constructivist position, and is also considered to be less governed by rules during the analysis phase. This allows for more in-depth meaning of the data can be obtained, in which theory is therefore derived from the data itself in line with the exploratory aims of the research.  Reflexivity is commonly practiced in the context of undertaking qualitative research and is well acknowledged within academia. The process of reflexivity involves the researcher reflecting on their own positionality and influence in relation to the research being conducted, in which the purpose of reflexivity is intended to ‘evaluate’ or ‘measure’ the quality and rigour of qualitative studies. Braun and Clarke (2019) in publishing a reflective commentary on the topic of ‘reflexive thematic analysis’, identify that ‘themes do not passively emerge from either data or coding’ instead, Braun and Clarke (2019) argue that ‘themes are creative and interpretive stories about the data, produced at the intersection of the researchers theoretical assumptions’. It is therefore imperative for researchers to acknowledge their positionality and theoretical position in respect to the interviewing EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 104  process, but also throughout the process of coding and conducting TA. In the following section, the researcher addresses personal reflexivity and use of a reflective diary in paying due attention to positionality and influence.  Personal reflexivity Lived experience and EDI involvement.  As a trainee who identifies as having lived experience of accessing services, I am particularly passionate about equality and diversity, and improving patient experience (EDI). As such, I have also been involved in supporting EDI projects at the university during my training journey. Exploring how clinicians encompass psychosocial and cultural factors within surgery decision-making, is therefore a topic area that closely aligns with my own values and interests. With this in mind, I am mindful that my specific passion for EDI and exploring psychosocial and cultural factors, may potentially influence what aspects of conversations I become attuned to, during the interview process and in coding. Conversely, being involved in EDI projects, and increasing my awareness of issues of equality and diversity, may have positively influenced the follow up questions that were asked, in gathering further information related to particular topics, and may also have also increased my awareness of these themes within the process of conducting my analysis.  In further reflecting on my own experiences and position in relation to the research, I am also an individual who has received orthodontic treatment during childhood and who has also undergone surgery at various stages of life, spanning school age to adulthood. During this time, I also attended various health appointments during my primary school years, which involved taking time off school and liaising with different health professionals. In considering these experiences, I have reflected on how there has been a significant shift in decision-making, particularly around the involvement of young people in SDM and ensuring EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 105  that young peoples voices are heard. It is also possible that these experiences, may influence my attunement to certain narratives around shared-decision-making, particularly the involvement of young people within the shared decision-making process for surgery and how this is experienced with regards to psychosocial and cultural factors. In considering this position, I used a reflective journal throughout the project, which allowed me to consider my own role in relation to the research. Codes and themes were also discussed in supervision, in which sections of a variety of anonymised transcripts were also reviewed by the research team (KM and EY) in improving quality and rigour. Role as a Trainee Psychologist  During discussions, I was mindful that participants would be aware of my role as a Trainee Psychologist. As the participant sample consisted of clinicians working alongside Clinical Psychologists in their role, it is highly likely, that this influenced the interviewing process. Indeed, this may have influenced the narratives shared around Psychology as a discipline, or discussions centred around interactions with psychologists. Similarly, when discussing psychosocial factors, this may have influenced the way in which psychological factors were discussed. This was considered during the process of building the interview topic guide, in which questions were purposefully framed openly around the factors considered during decision-making, prompting around psychological, social, and cultural factors depending on the conversation and what was elicited. The interview topic guide was also reviewed by a Surgeon, Orthodontist, Speech and Language Therapist and Clinical Psychologist working in cleft services, in ensuring the questions felt representative.    EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 106  Impact on clinical practice  The experience of interviewing clinicians has been an invaluable process. During the course of the thesis project, I had joined a paediatric psychology service, of which the themes surrounding health inequalities and psychosocial and cultural factors have also become apparent in my own clinical work. It is therefore important to highlight, that the themes raised in this study, are not only applicable to cleft surgery decision-making, but are also applicable to professionals working in paediatric health settings more widely and EDI projects conducted within services.                    EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 107  Chapter Six: Extended Results, Discussion and Critical Evaluation   The thesis portfolio aims to provide an overview of the reported barriers and facilitators to shared decision-making in paediatric surgery, with a focus on exploring the decision-making experiences of clinicians in the context of orthognathic surgery in cleft services. Across both papers, the importance of the patient-physician relationship, building trust and rapport and the provision of timely and reliable information, is acknowledged in promoting shared decision-making in paediatric surgery (Atsaidis et al., 2022; Papiez et al., 2021; Lecouturier et al., 2015). Conversely, receiving too much, or too little information, and paternalistic approaches have been reported to pose a barrier to engaging in SDM (Samanta et al., 2022; Atsaidis et al., 2022; Sjoberg et al., 2015; Heath at al., 2016) The importance of considering psychosocial factors and cultural and religious values within SDM is highlighted in the literature, of which a cleft may be viewed by some communities as being a ‘gift from god’ or resulting from supernatural or mythical forces (Hasanuddin et al., 2023). Clients may also report experiences of stigma in their communities, which has been associated with scarring and concerns around finding a marriage partner (Stock et al., 2018). Having an awareness of cross-cultural beliefs is therefore paramount to promoting positive health outcomes and collaboration, however the findings of the empirical study suggest that there are still health inequalities that need to be addressed, that preclude patients turning up to clinic. These include, but are not limited to, financial considerations, expectations around accessing a dentist and having “good oral health”, child-care considerations and educational/employment implications. In addition to this, when presenting to clinic, clinicians report experiences of uncertainty with regards to EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 108  accessing interpreters or felt that cultural considerations did not arise in their work or could be considered further.  Additional results will be provided below, which could not be captured in the empirical paper due to the word limit set by the chosen journal. The current chapter will also provide a summary and critical evaluation of both papers, discussing the findings and clinical implications in relation to the evidence base and wider theoretical context.  Summary of key findings  Taken together, the findings of the systematic review and empirical paper provide an overview of different factors that clinicians may experience or report whilst navigating the shared decision-making process for paediatric surgery and orthognathic surgery specifically. Key findings from both papers will be discussed, making reference to the evidence base and theoretical implications.  Systematic Review   A systematic review was conducted with the aims of exploring the perceived barriers and facilitators to shared decision-making, as reported by young people, their families and/or caregivers and clinicians involved in the decision-making process for paediatric surgery.  Seventeen papers were included in the final report, of which four analytic themes and 11 major descriptive themes were identified. Interpersonal qualities, communication, and considering sources of support, were all acknowledged as factors impacting on decision-making across both projects. In particular, having the opportunity to revisit discussions with the clinical team and being given sufficient time to make decisions for paediatric surgery, EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 109  were identified as factors that enable or facilitate shared decision-making (Atsaidis et al., 2022; Samanta et al., 2022) Being provided with reliable information that is tailored to the young person was also reported to be a facilitator to shared decision-making, of which families reported to find it helpful when statistics or percentages were shared (Carlisle et al., 2022; Loeff and Shakhsheer., 2021) Interpersonal qualities of the clinician and the relationship with the young persons paediatrician in particular, were found to be facilitators to the decision-making process. Families reported to find it beneficial to include their child’s paediatrician in SDM discussions (Boss et al., 2017; Waite et al., 2022), however it is acknowledged that this is predominantly reported in American based studies, whereby the paediatrician may hold different roles and responsibilities. Empathy, kindness, and genuineness of clinicians were reported to enable SDM, of which using lay language, using a slow conversational pace, and increasing involvement of families in SDM, were reported as facilitators (Carlisle et al., 2022). Conversely, families not feeling listened to or involved in SDM, receiving too little or too much information, use of ‘medical jargon’ and perceiving apathy or judgement from clinicians were reported as barriers to engaging in SDM (Samanta et al., 2022; Smith et al., 2013;  Links et al., 2020; Waite et al., 2022). Empirical Paper  A qualitative study was employed in exploring clinicians understanding of psychological, social, and cultural factors and how these factors may be considered during the decision-making process for orthognathic surgery. The study involved conducting 9 interviews with 3 speech and language therapists, 3 Orthognathic Surgeons and 3 Orthodontists involved in the decision-making process at the transition period, of which the EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 110  results of a thematic analysis revealed 3 major themes and 7 subthemes. Clinicians reflected on the complex nature of balancing patient autonomy and acting in the best interest of young people, which created a sense of internal conflict and discomfort for professionals who were positioned as the ‘final decision maker’ for surgery. Having opportunities for liaison with the multidisciplinary team and having the valued contribution of different team members to the decision-making process, were reported to be helpful in managing feelings of discomfort and were found to facilitate decision-making.  The environment by which professionals and young people navigate the decision-making process, however, was acknowledged as a potential barrier to engaging in decision-making. When consulting with young people and the multidisciplinary team about orthognathic surgery, power dynamics were acknowledged as potentially hindering shared decision-making, with consideration being given to the number of professionals in one room and how the chairs and dental chairs are positioned. Health inequalities and perceived equity across services were also raised as barriers to accessing cleft care, precluding decision-making for orthognathic surgery.  Extended results Awareness of psychological and cultural factors: In asking clinicians about any cultural factors, they consider during the decision-making process for orthognathic surgery, awareness and consideration of cultural factors differed across professionals. For some, specific examples were shared around working with patients from different cultural and religious backgrounds as referenced in the empirical paper. In contrast, other professionals felt that cultural factors had not arose in their work, or descriptions of working with cultural EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 111  factors was limited to referencing collaboration with interpreters or considering timing of surgery around religions holidays. Maybe we don't. I don't know. specifically cultural... I'm not sure we do address that particularly well (Participant 1).  in my limited experience, I don't think I’ve come across any patients with whom I thought…or that it's come up that there's any cultural factors That might have impacted on the care that I would give… other than and possibly having to involve an interpreter.’ (Participant 8). I can't think of any particular examples where. uh, where a patient's ethnicity may have changed our relationship with them or change the way that we manage the MDT because our aim is, is to provide the same service for every patient. So, you know, I'm sure there are considerations around, you know, I don't know. Um, but you know, if you want your jaw surgery on Christmas Eve or if you want it on Eid or you know, whatever, I think I think we would we we're completely flexible about those sorts of things (Participant 6).  I am not thinking of a moment where any of those have, like any cultural…social or psychological... factors, have sort of come up. I'm sure it would... come up if. Psychology appointments but yeah, I don’t know any that come up. I don't think I can't think of an example anyway. (Participant 9) In speaking with professionals, it is acknowledged that often limited to no training is provided around understanding psychological or cultural factors, supporting the findings of Stiernman et al. (2019) who reported that health professionals often derive their knowledge EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 112  from conferences or seminars as opposed to receiving formal training. These findings may therefore have implications for clinicians in receiving more training around psychosocial and cultural factors. Barriers and facilitators to shared decision-making in OS. In considering factors that are perceived to enable or pose a barrier to the decision-making process, clinicians made reference to use of language, humour, acceptability of returning to the treatment pathway, emotional maturity and comprehension level. Clinicians were also mindful of the need to give time to consider decision-making, and clinicians acknowledged factors such as educational background and presence of learning difficulties that may require adaptions to SDM. I always try and make a little joke, you know, like, nobody else looks at this type of level,  like, I'm just a big nerd and I'm doing all my measurements and I  almost say something like self deprecating to not make them feel bad that I'm doing things like pretty critical measurements.’ (Participant 5). Parking people with their thoughts for a while is probably my most commonly used tactic… if I feel either, the patient needs a bit more time to think... to digest things…or if I need...if I’m not happy and I think that the possibly someone’s trying to get something that is maybe not going to work for them’ (Participant 7). So that would make her MDT appointment slightly different from, you know, another 16-year-old that.  Have a very similar. Jaw set up very similar, you know, potential improvement but has family support, comes with mum and Dad has just finished GCSEs is on a college…You know all those sorts of subtle differences and EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 113  that that young person. In the second sort of group would be able to understand written information. Would be able to go away and reflect and have the family support to discuss things at home, whereas the young lady probably won't. So… it's about it's about how we tailor that.’ (Participant 3).  It's never off the table. And even I said I say to patients like if you say you don't want surgery, I'm not going to be mad. Like, I'll have this conversation with you later. It's never off the table, you know. So that they know that you know it's not a black and white decision. So, if they do decide when they're 25 that they want to have this done, then come back and have a chat. So, I think the door is kind of always open and that's a really good MDT’ (Participant 5) And I think that actually that's something that our service is really good at and we always try and let patients know that actually this doesn't have to be something that you have done now, this can be something that is, you know, years in the future or even decades in the future if you ever decide that you wanted to pursue it once it and I do think that we're really good at saying that and providing that as a service that if anybody wants to come back into the service, we're always very happy to do that.’ (Participant 8) I think the young person's...emotional wellbeing, their maturity, their comprehension. Because I think we do have some young people with some learning needs, and I think understanding risks versus benefits can be much harder for them.’ (Participant 3). These findings support those reported in the systematic review, of which gauging comprehension level and having limited language or comprehension skills were reported to EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 114  influence the shared decision-making process (Atsaidis et al., 2022). Similarly the importance of giving time to make a decision and offering repeated visits and opportunity for discussion, are acknowledged in both the systematic review and empirical study (Almoajil et al., 2022; Timmermans et al., 2018; Samanta et al., 2022; Papiez et al., 2021).Furthermore, the results also support those of Kleinman (1979) in which the importance of considering a patients comprehension level, educational background and language is highlighted.  Thesis strengths and limitations  Systematic review: A strength of the systematic review, is that the report encompasses a variety of different study types, including a scoping review, mixed methods study, observational study, and case report in addition to qualitative studies. The review also includes research undertaken internationally, such as in the USA, Canada, and Sweden. Due to the limited published research available around the barriers and facilitators to engaging in shared decision-making in paediatric surgery, including a variety of study types and keeping the inclusion criteria broad allowed for a more comprehensive overview of the literature. The systematic review also benefits from having a secondary screener during the screening of titles and abstract stage, at the full text screening phase and in quality appraising studies, enhancing the quality and rigour of the review. Studies were also critically appraised respectively using different quality appraisal tools, owing to the differences in methodology. Although the review included a variety of study types, and were appraised accordingly with specific appraisal tools, greater difficulty was experienced in appraising observational and case report studies. It is reported that critical appraisal tools vary in their intent, components, construction, and psychometric properties, therefore in appraising EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 115  research, consideration should be given to the properties and appraisal tool chosen (Katrak et al., 2004). Although the appraisal tools selected to appraise observational research and case reports were assessed to be the most appropriate, these tools did not adequately represent the quality of the studies, receiving a lower rating due to questions being ‘non-applicable.’ These papers were discussed in research supervision, of which the decision was made to include these papers, due to their valued contribution to the review. A further limitation that was considered, is that the review did not include grey literature, of which further reviews may wish to include unpublished or grey literature in addressing publication bias.  Empirical Paper  Previous research has reported on the experiences of young people and their parents in making decisions for orthognathic surgery, with suggestions for further research centring around exploring the experiences of clinicians involved in the decision-making process. This study provides an in-depth exploration of the decision-making process at the transition period, with a focus on understanding how Clinicians understand and consider psychological, social, and cultural factors when supporting young people in their decision-making for OS.   The study benefits from having the participation of clinicians in designing the interview topic guide and having the opportunity to role play the interview topic guide with a professional working in the field beforehand. This allowed the researcher to consider the impact asking different questions would have on participating clinicians, specifically when considering how to introduce questions around ethical dilemmas. Role playing the interview topic guide, also provided an opportunity to develop prompting questions further.  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 116  As the systematic review was conducted prior to the empirical study commencing, the researcher had an awareness of different barriers and facilitators being reported in relation to paediatric surgery decision-making. The researcher continuously reflected on the potential impact of having this knowledge on the interpretation of the findings and generation of themes from the data. Themes were discussed in supervision, of which the researcher reflected on any potential influence with the research team.  Theoretical implications  In contextualising the findings of the systematic review and empirical paper using the model of shared decision-making proposed by Park and Cho (2018), the theme ‘navigating the decision-making process’ and clinicians speaking to the difficulty of balancing patient autonomy and beneficence aligns strongly with this. In hearing clinician narratives, particularly those of clinicians who are positioned as ‘final decision maker’ for orthognathic surgery, the desire for certainty in the decision-making process became apparent. Clinicians acknowledge the shift in paternalism, of which they are aware of the importance of involving the young person in shared decision-making, however this can sometimes be difficult for clinicians and create feelings of discomfort when motivations for surgery are not clear or when young people present to surgery having been ‘told’ orthognathic surgery is required or the natural next step in the treatment pathway. Clinicians therefore may find themselves in a position whereby complete certainty cannot be obtained, therefore reaching a ‘joint decision’ or ‘compromise’ that both parties can accept and come to an agreement on. This decision will be reached upon the outcomes, treatment benefits and risks having been discussed with the child or young person and their family, as outlined in Park and Cho’s model (2017). In exploring motivations around surgery, this will also involve identifying a EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 117  ‘common goal,’ of which clinicians spoke about the valued opinion of MDT members, such as that of psychology in exploring motivations for surgery, or speech and language therapists in advising of any changes to speech. Clinicians spoke of the importance of understanding the young persons motivations for surgery and managing expectations in order to be able to proceed with decision-making for surgery, aligning with the attributes listed in Park and Cho’s model.  In contextualising the findings of the systematic review using Park and Cho’s model, Park and Cho highlight how shared decision-making requires the active participation of all parties (child, parents, and Clinicians). In the systematic review, parents not feeling involved in decision-making, not feeling listened to, or clinicians perceiving families or young people as not wanting to be involved in SDM, were reported to be barriers to SDM. Not perceiving families or young people as wishing to be involved in SDM, may also speak to the ‘antecedents’ listed in Park and Cho’s model, of which ‘willingness to participate in decision-making’ is listed as an antecedent to paediatric decision-making. Several barriers and facilitators identified around use of language, communication and interpersonal skills, provision of information, and identifying support around the family and young person can be viewed as impacting on ‘collaborative partnership’, which also focusses on understanding the families’ values. As reported in the systematic review, considering the families values, beliefs and preferences were also noted as being a facilitator to SDM (Atsaidis et al., 2022) aligning with the model proposed by Park and Cho (2018). Jordan et al. (2020) in reporting on the viewpoints of a paediatric patient, parent, and paediatrician about the use of SDM in paediatrics, highlight the importance of the patient-physician relationship, building trust and valuing patient experience and knowledge EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 118  in facilitating SDM. The young person shares their experience of being provided with advice that was counter to what their experience told them was best. They also shared that having increased knowledge about their care and treatment, enabled them to feel more comfortable asking questions and increased their engagement in treatment.  The results from the systematic review and empirical paper, also make reference to these themes. In the systematic review, receiving contrasting information, not feeling listened to, and apathy to engage in open dialogue were reported to pose a barrier to SDM. Similarly, providing consistent information and building a trusting relationship with patients were found to enable SDM.  In providing a parent’s perspective on engaging in SDM, the parent shares that the unfamiliarity of the symptoms and medication effects could feel intimidating and made it difficult to get involved in decision-making. In support of this account, the findings of the systematic review, suggest that it is beneficial for clinicians to provide preparatory information and support parents in seeking out health information, signposting to peer support and sources of reliable information. Assuming parental knowledge and comprehension level, was also reported as a barrier to engaging in SDM, in support of this account. These findings are also supported by the empirical paper, in that clinicians spoke of signposting patients to ‘reliable’ information (for example, from the British Orthodontic Society) or to peer information.  In agreement with the young person’s account of engaging in SDM, a Paediatrician reports that a facilitator to this process is having a longstanding relationship with the patient, obtaining a history to build upon in understanding their goals. They further share that this has allowed them to develop a ‘partnership’ with families, in which they are aware EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 119  of the intention to make decisions together. Conversely, if a patient is new and there is limited time to discuss treatment options and facilitate SDM, this may pose a barrier to engaging in the process. Across clinician narratives in the empirical study, themes also emerged around the importance of the patient-physician relationship. Orthodontists were remarked on as having a longstanding relationship with patients across the cleft treatment pathway, of which they often have an insight into the patient’s life, their thoughts and personality. In contrast, being unknown to the patient, was reported to pose a barrier to shared decision-making for orthognathic surgery in the sense that the clinician is attempting to explore motivations for  surgery in a setting whereby therapeutic rapport and psychological safety are yet to have developed and are in some cases, adversely affected by the shared decision-making environment. This also provides evidence in support of the young person’s account, highlighting the importance of the patient-physician relationship and rapport building.  Leadership in the NHS  As the NHS continuously evolves, there has been a shift from ‘command and control’ structures towards adopting collective, inclusive and compassionate leadership styles (Bailey and West., 2022) In implementing this approach, there is a greater emphasis on distributing leadership to where expertise, motivation and capability lies and avoiding imposing decisions from the top down. This is also re-iterated in the NHS Long Term Plan (NHS England, 2019), whereby one of the aims is to ‘strengthen and support good, compassionate, and diverse leadership at all levels. In accordance with this, when interviewing clinicians about their decision-making experiences around orthognathic surgery, clinicians spoke about everybody being a ‘clinical lead’ and having a role to play EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 120  within the shared decision-making discussion with patients. One clinician highlighted how it was important that the team was not seen as being ‘surgeon led,’ and meetings were often facilitated by professionals who had the most input or experience with the patient, speaking to their speciality and input.  Adopting a compassionate leadership style, is also understood to include listening to staff and arriving at a shared understanding of the challenges they face. In the empirical study, this was felt to vary depending on the set up of teams, and whether these were centralised or bespoke. Although clinicians reported to have strong working relationships with their colleagues, including building links with community colleagues, there was a desire for more opportunities for liaison. Ad-hoc conversations were remarked on as being beneficial for clinicians, however for some teams, there was variance in equity and health inequalities across services, with some teams feeling that more opportunities for liaison would be beneficial.  Participant feedback on the interview process Positive feedback was received regarding taking part in the interview process, with clinicians sharing that this provided opportunities to take a step back from the decision-making process and ‘look in.’ In particular, clinicians commented that the interview processes provided an opportunity to consider aspects of equality, diversity and inclusion and to bring ideas back for discussion with the clinical team and clinicians also felt that the interview process allowed for greater consideration of the transition period specifically, bringing awareness to factors that may be beneficial to consider in relation to this. Positive feedback was also shared from the Clinical Excellence Network meeting, in which the provisional results from the study, were shared in February 2024. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 121  Health Inequalities  The prevalence of health inequalities impacting on access to cleft care are highlighted across the literature, with socioeconomic status and identifying as being from a marginalised background being reported as factors impacted on access to care (Smillie et al., 2015; Stock et al., 2018; Abbott et al., 2011; Zaluzec et al., 2019).  In a study exploring clinical directors views of centralisation and commissioning of cleft services in the UK (Searle et al., 2015) varying accounts regarding equity in services and access to care were reported. In one account, the participant gives the opinion that the team is ‘team centric’ whereby the cleft team rotate around the patient, rather than patient and staff rotating around the surgeon, speaking to the advantages of moving towards greater centralisation of teams. In contrast, regional differences were highlighted with a participant sharing the need for ‘equity of cleft care’ and that ‘every centre has a different model of funding’ highlighting disparities. Another participant also raised how clinicians may be required to travel to and between services, which could have an adverse effect on staff and lead to ‘burn out’.  In the empirical study, concerns regarding equity in services and barriers to accessing healthcare were also reported by some clinicians. Clinicians spoke of how professionals in attendance at different clinics may vary and ‘obstacles’ that preclude patients turning up to clinic, such as the requirement to see a dentist regularly and have ‘good oral health’ amongst employment, financial or childcare considerations were also noted. A clinician remarked on how they don’t see the same mixture of backgrounds in their clinic, that they would expect from the general population, suggesting there is still a need to address health inequalities impacting on access to care that need to be addressed, prior to reaching EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 122  discussions around orthognathic surgery. The evidence base suggests that working in a more synchronised manner and increasing information sharing, may be helpful in addressing health inequalities and improving practises (Wagner et al., 2021). supporting the themes raised in this study around fostering team liaison.  Research implications.  In combining the findings from both the systematic review and empirical study, the portfolio highlights two key areas for further research. Shared decision-making is a well-established concept within the field of surgery decision-making, however much of this research has focussed on adult populations. It is recommended that further research focusses on reviewing the literature in this field, which may include evaluating the impact of shared decision-making interventions in paediatric settings in particular. Furthermore, the portfolio brings awareness to health inequalities impacting on access to care, precluding shared decision-making being able to take place. In meeting the six core principles that underpin our NHS values, it is therefore of significant importance to conduct further research to explore and address health inequalities impacting on access to cleft care.  Overall conclusions  Overall, the thesis portfolio highlights a complex interplay of factors that impact on the decision-making process for paediatric surgery. Areas for particular consideration centre on developing a greater understanding of health inequalities impacting on access to cleft care and considering the different ways in which teams can enhance communication and liaison in services where there is a desire to increase this or whereby less opportunities to access these spaces are reported. Services may also wish to focus specifically on factors emerging at the transition period in particular, sharing knowledge around barriers and EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 123  facilitators impacting on the decision-making process at this specific life stage whereby the set up of services and organisational structures may mean this is more or less of a transition for young people (e.g. from children to adult services or remaining in the same system).                  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 124  Thesis portfolio references Abbott, M. M., Kokorowski, P. J., & Meara, J. G. (2011). 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K., Patel, P. K., & Rosenberg, J. (2019). Delay in Cleft Lip and Palate Surgical Repair. 30(8), 2328–2331. https://doi.org/10.1097/scs.00000000000057 Zamboni, R., de Moura, F. R. R., Brew, M. C., Rivaldo, E. G., Braz, M. A., Grossmann, E., & Bavaresco, C. S. (2019). Impacts of Orthognathic Surgery on Patient Satisfaction, Overall Quality of Life, and Oral Health-Related Quality of Life: A Systematic Literature Review. International Journal of Dentistry, 2019, 1–15. https://doi.org/10.1155/2019/2864216   Zaroni, F. M., Sales, P. H. D. H., Maffìa, F., & Scariot, R. (2024). Complications of orthognathic surgery in patients with cleft lip and palate: A systematic review. Journal of stomatology, oral and maxillofacial surgery, 125(6), 101795. Advance online publication. https://doi.org/10.1016/j.jormas.2024.101795       EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 142  List of appendices Appendix 1. Author Information, The Journal of Pediatric Health Care (JPHC) Appendix 2. Quality Criteria of Included Studies Appendix 3. CASP Checklist for Appraising Qualitative Studies Appendix 4. CASP Checklist for Appraising Cohort Studies Appendix 5. JBI Checklist for Appraising Case Reports Appendix 6. JBI Checklist for Systematic Reviews and Research Syntheses Appendix 7. NHLBI Quality Assessment Tool for Appraising Observational and  Cross-Sectional Studies Appendix 8.Mixed Methods Appraisal Tool (MMAT) Appendix 9. The Cleft Palate-Craniofacial Journal Submission Guidelines Appendix 10. UEA FHM S-REC Approval  Appendix 11. Health Research Authority (HRA) Approval  Appendix 12. Interview Topic Guide  Appendix 13. Recruitment Email  Appendix 14. Participant Information Sheet  Appendix 15 Coding Framework Appendix 16. Participant Consent Form Appendix 17.Example Coding of Transcript EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 143  Appendix 18. Example Theme Development Appendix 19. Visual representation of searching for themes and subthemes  Appendix 20. Worked example of reviewing and defining themes                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 144  Appendix 1: Author Information, The Journal of Pediatric Health Care (JPHC) Author Information    EDITORIAL POLICIES  The Journal of Pediatric Health Care (JPHC) invites research studies, the analysis of new and innovative methodologies for pediatric research, quality improvement studies, and clinical articles concerning pediatric clinical practice, including case reports (e.g., primary, acute, specialty, home health, school health, including nurse practitioner managed school-based health center practices, and behavior and mental health), and pediatric/adolescent pharmacology and psychopharmacology. We also invite papers related to health care policy, role/professional issues, global health care, continuing education and educational innovations relevant to the pediatric nurse practicing in an advanced practice role. 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Note figures and tables are to be submitted as separate files (see below). Revised manuscripts should also be accompanied by a unique file (separate from the cover letter) with anonymous responses to reviewers' comments. Please note that the response to reviewers should not contain any identifying information. The preferred order of files is as follows: cover letter, title page, response to reviews (revised manuscripts only), manuscript file(s), table(s), EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 160  figure(s).  Papers must be prepared using American Psychological Association (APA) style. You are referred to the Publication Manual of the American Psychological Association, Seventh Edition, copies of which may be ordered from http://books.apa.org/books.cfm?id=4200067 or APA Order Dept., P.O.B. 2710, Hyattsville, MD 20784, USA or APA, 3 Henrietta Street, London, WC3E 8LU, UK.  Manuscripts may be submitted with the goal of offering CE credit (see Continuing Education below).  All correspondence once the manuscript is submitted, including the Editor's decision and request for revision, will be by e-mail.     MANUSCRIPT PREPARATION  Manuscripts (text, excluding references and tables) should not exceed 5000 words. Department submissions have varied word counts (see EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 161  Department Manuscript Preparation below). If abbreviations cannot be avoided, use the expanded form when first mentioned and abbreviate thereafter. Use generic drug and equipment names (trade names may be listed in parentheses at the point of first mention). If it is necessary to mention a trade name for equipment, the name must be followed immediately by the manufacturer's name and city/state. Pagination should begin with the title page as page 1 and continue through the entire manuscript.  To each page, add Line Numbers, a function of Microsoft Word, prior to submitting. Line numbering is required. Submissions without line numbers will be returned to the corresponding author for correction prior to sending the manuscript to reviewer for comments.  Title Page. Articles require a title page. It should include the title of the manuscript, author names with earned credentials (as per the American Academy of Nursing, http://www.aannet.org), job title, and corresponding author's address, email, and phone number. It should also include any disclosures, acknowledgments, and key words. Note for retired authors: please list your previous position title and institution. If you are also the corresponding author, please use your previous institution's work address unless you would prefer your home address be listed. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 162   Key Words. On the title page, provide 3 to 5 key words, using American spelling and avoiding general and plural terms and multiple concepts (avoid, for example, 'and', 'of'). Please think carefully about the Keywords for your manuscript. Keywords should be MeSH terms. When your article is published, using the Medical Subject Headings (MeSH) terms as keywords, which are established by the National Library of Medicine, makes it more likely that your article will appear in a search by anyone using medical databases (PubMed, CINAHL, etc) for biomedical or health-related information.  APA format as listed above under manuscript submissions  Research Articles  We welcome all styles of rigorous research investigations addressing the health, disorders, diseases, primary, acute, and specialty care for all ages pediatric, adolescent, and young adults: as well as aspects of practice for pediatric nurse practitioners, and family nurse practitioners advanced practice nurse practitioners focusing on all pediatric populations.  Research Studies include, but are not limited to: EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 163   1. Quantitative studies: Experimental; Quasi experimental; Descriptive; Correlational a. Exemplars: b. Randomized control trials (RCTs) reporting using the CONSORT criteria: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6398298/ OR https://www.elsevier.com/__data/promis_misc/apmr_repguide.pdf c. Systematic and Meta-analyses reporting using the PRISMA criteria https://pubmed.ncbi.nlm.nih.gov/33782057/ d. https://www.sciencedirect.com/science/journal/26665719/publish/guide-for-authors e. Integrative reviews: https://www.sciencedirect.com/science/journal/22134220/publish/guide-for-authors f. Concept analysis: https://pubmed.ncbi.nlm.nih.gov/27450481/  2. Qualitative Research: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8106287/# a. Phenomenological b. Grounded theory c. Ethnographic d. Narrative e. Historical  3. Mixed Methods Research EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 164  a. Reporting guidelines: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9223457/  4. Implementation Science: a. The Standards for Reporting Implementation Science (StaRI) style b. https://pubmed.ncbi.nlm.nih.gov/28264797/  -Please refer to the information below for Tables, Figures, and Video data, and Supplementary materials for all research studies.  -Authors for research studies must be able to provide data, if requested by readers who wish to duplicate the study.  -Before authors final submission, please see Elseviers checklist at the end of this author's guide.  Quality Improvement Articles  1. Quality improvement studies in advanced practice pediatric nursing and their families, pediatric health care systems, and organizations are welcomed.  2. Reporting style using the Squire 2.0 guidelines. They may be modified EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 165  based on the particular project completed.  3. Squire 2.0  4. Quality Improvement Project articles should include a structured abstract with the following headings: Background Local Problem or Aim Statement Methods Interventions Results Conclusions  Abstract. Abstracts should be limited to 150 words and appear on the first page after the title page. The abstract should be factual, and present the key points in the manuscript, with a summary of clinical implications. Abstracts are published for all full-length articles and some Departments.  Introduction: State the purpose or objective of the study, including the major hypothesis tested, if any.  Method: Describe the study design, the setting, sample, and measures EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 166  used to collect data.  Results: Describe the major outcomes and statistical significance, if appropriate.  Discussion: State the significance of the results.  Letters to the Editor. Letters to the Editor raising some point of current interest or commenting on an article that appeared in the JPHC will be considered for publication. The Editor reserves the right to accept, reject, or excerpt letters without changing the views expressed by the writer. The author will have an opportunity to reply to the comments.  DEPARTMENT MANUSCRIPT PREPARATION  Department features are published in varying frequency. Queries regarding department submissions can be sent to the corresponding or department editor listed. Suggested words counts for manuscript length are listed in the department descriptions. Authors should follow the instructions for full length articles.   Primary Care Case Report. This section features case presentations EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 167  reflecting either common or unusual clinical situations seen in primary care. The anonymity of patients presented should be maintained and permission obtained from the patient and or family if the patient is not de-identified. IRB approval for the presentation of case reports may be required and is the author's responsibility. Any author interested in sending a query should direct their cases to the Corresponding Editor at joannserota@msn.com. See the suggested template for case report preparation. The suggested word count is 3000.  Reporting guidelines using CARE Guidelines: https://www.care-statement.org  Authors are encouraged to use the CARE Checklist prior to submission: https://www.care-statement.org/checklist  Acute & Specialty Care Case Report. This Department features case presentations reflecting either acute or specialty care. The anonymity of patients presented should be maintained and permission obtained from the patient and or family if the patient is not de-identified. IRB approval for the presentation of case reports may be required and is the author's responsibility. Any author interested in sending a query should contact the corresponding editor at maddenma@rwjms.rutgers.edu. See the suggested template for case report preparation. The suggested word count is 3000. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 168   Reporting guidelines using CARE Guidelines: https://www.care-statement.org  Authors are encouraged to use the CARE Checklist prior to submission: https://www.care-statement.org/checklist  Health Policy & Professional Issues. Health PolicyCurrent and compelling state, national health and international policy issues impacting children and their families are published. The suggested word count for this department is 1500 words. Professional IssuesThis Department features articles about professional practice, role issues, and leadership topics of interest to pediatric advanced practice nurses.The suggested word count is 2500 words. The corresponding editor for Health Policy and Professional Issues is efrybowers@usfca.edu.  Research Methods. This feature seeks to provide new and innovative research methodologies for pediatric investigations to inform the design, implementation, dissemination, and evaluation of research-based care by PNPs. Analysis of methodologies to advance the science and evidence-base for pediatric and family centered research studies are encouraged. Send queries to the corresponding editor at rspratling@gsu.edu. The EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 169  suggested word count is 2000 words.  CONTINUING EDUCATION MANUSCRIPT PREPARATION  Continuing education. Manuscripts on non-pharmacologic clinical topics that highlight changes in clinical practice based on the latest available research studies supporting or refuting current practices. This column is a CE offering (see CE instructions below). Queries for this Department can be sent to the associate editor at anne.derouin@duke.edu.  Pharmacology CE. Manuscripts on pharmacologic and psychopharmacology management of pediatric, adolescent, and young adult illnesses are published. Analysis of the pharmacokinetics, pharmacodynamics and pharmacogenomics related to specific medical diagnoses, prescribing practices, drug safety, drug monitoring, and side effects are published. This column is a CE offering (see CE instructions below). Queries for this Department can be sent to the corresponding editor at TWoo@stmartin.edu.  Continuing Education Article Author Information  Manuscripts submitted may offer varying amounts of CE credit. To be EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 170  considered for CE, a manuscript must include:  1. Demonstration of the prospective author's expertise in the subject matter through experience, education, or both.  2. List 3-5 objectives, using action verbs that require readers to demonstrate their understanding of the topic (e.g., Explain the pathophysiology of...Recommend an appropriate approach...Discuss important considerations...). Use of Bloom's Revised taxonomy is recommended to develop each of the objectives and relevant questions.  3. A researched, referenced manuscript of approximately 6000 words (including objectives, tables, and posttest questions/answers). The text must provide current, advanced, testable information on clinical or professional topics.  4. Ten multiple-choice questions with 4 responses each or true/false items with the correct answers indicated. (See "Tips for Writing Test Questions.") Multiple choice questions with the correct answer of "all of the above" are not acceptable.  5. A curriculum vitae for each author should be sent EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 171  to lnelsen@napnap.org upon acceptance.  6. A faculty declaration form for NAPNAP must be completed by all authors. This form can be accessed at http://www.jpedhc.org. Completed forms should be returned to lnelsen@napnap.org.  Tips for Writing Test Questions  Questions should measure mastery of objectives and article content. Ideally, the majority of questions should be designed for the reader to apply knowledge learned from reading the article as opposed to simple recall of information.  1. Be sure the order of questions matches the sequence of information in the article. For example, question #1 should correspond to the information that appears in the article first.  2. After you have finished writing the test, be certain that the test includes questions that relate to each objective.  3. Make questions multiple choice with possible options labeled "a," "b," "c," "d." EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 172   4. Be certain that the 3 incorrect options are not plausible.  5. Use the same terminology in the test as in the narrative. (For example, if the narrative refers only to "hypertension," use "hypertension," not "high blood pressure," in the test.)  6. Make sure the correct option is derived directly from the narrative and clearly defensible as the best answer.  7. Avoid using words in the correct option that are also found in the stem (the first part of the question). Doing so provides "clues" to the correct answer.  8. Make sure that the options are not mutually exclusive. For example, if option "a" reads, "Slows the heart rate," and option "b" reads, "Increases the heart rate," these 2 options are mutually exclusive. The test taker can be reasonably certain that "c" and "d" are extraneous, and that either "a" or "b" is the correct answer.  9. Be sure that 1 or more of the options are not included in another option. For example, if option "a" reads, "Affects the heart rate," and option "b" EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 173  reads, "Slows the heart rate," option "b" is actually included in option "a." Thus, if "b" is a correct response, "a" is also.  10. Include an answer key. The editor reserves the right to edit questions submitted for purposes of clarity and accuracy. The editors acknowledge the challenge of constructing a posttest that is accurate and clear.  Continuing Education Approval Procedure  1. The number of contact hours is assigned by the Education department of NAPNAP.  2. One member of the CE Committee not associated with the JPHC, who matches the profile of the average JPHC reader, is asked to review the article. An average of the time it takes them to read the article and complete the posttest will determine the number of contact hour(s) assigned. One contact hour equals 60 minutes.  3. CE Articles are approved for 1 year. At the discretion of the Education department, the approval time may be shortened depending on the stability of the article content.  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 174  For more information regarding development of learning objectives and posttest questions, please contact Laura Nelsen at lnelsen@napnap.org.  Peer review  This journal operates a double anonymized review process. All contributions will be initially assessed by the editor for suitability for the journal. Papers deemed suitable are then typically sent to a minimum of two independent expert reviewers to assess the scientific quality of the paper. The Editor is responsible for the final decision regarding acceptance or rejection of articles. The Editor's decision is final. Editors are not involved in decisions about papers which they have written themselves or have been written by family members or colleagues or which relate to products or services in which the editor has an interest. Any such submission is subject to all of the journal's usual procedures, with peer review handled independently of the relevant editor and their research groups. More information on types of peer review.  Double anonymized review  This journal uses double anonymized review, which means the identities of the authors are concealed from the reviewers, and vice versa. More EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 175  information is available on our website. To facilitate this, please include the following separately: Title page (with author details): This should include the title, authors' names, affiliations, acknowledgements and any Declaration of Interest statement, and a complete address for the corresponding author including an e-mail address. Anonymized manuscript (no author details): The main body of the paper (including the references, figures, tables and any acknowledgements) should not include any identifying information, such as the authors' names or affiliations.  Use of word processing software  It is important that the file be saved in the native format of the word processor used. The text should be in single-column format. Keep the layout of the text as simple as possible. Most formatting codes will be removed and replaced on processing the article. In particular, do not use the word processor's options to justify text or to hyphenate words. However, do use bold face, italics, subscripts, superscripts etc. When preparing tables, if you are using a table grid, use only one grid for each individual table and not a grid for each row. If no grid is used, use tabs, not spaces, to align columns. The electronic text should be prepared in a way EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 176  very similar to that of conventional manuscripts (see also the Guide to Publishing with Elsevier). Note that source files of figures, tables and text graphics will be required whether or not you embed your figures in the text. See also the section on Electronic artwork. To avoid unnecessary errors you are strongly advised to use the 'spell-check' and 'grammar-check' functions of your word processor.  Highlights  Highlights are optional yet highly encouraged for this journal, as they increase the discoverability of your article via search engines. They consist of a short collection of bullet points that capture the novel results of your research as well as new methods that were used during the study (if any). Please have a look at the example Highlights.  Highlights should be submitted in a separate editable file in the online submission system. Please use 'Highlights' in the file name and include 3 to 5 bullet points (maximum 85 characters, including spaces, per bullet point).  Units  Follow internationally accepted rules and conventions: use the international EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 177  system of units (SI). If other units are mentioned, please give their equivalent in SI.  ILLUSTRATION SUBMISSION  Figures must be submitted in electronic format. Images should be provided in EPS or TIFF format per the instructions for online submission at https://www.editorialmanager.com/ymph. Illustrations should be numbered in the order of their mention in the text. Please refer to the Author Artwork Instructions link at the Journal's online submission system (https://www.editorialmanager.com/ymph) for additional information about artwork.  The legends should be typed double-spaced on a separate document and numbered to correspond with the figures. If a figure has been previously published, the legend must give full credit to the original source and permission obtained. Please send the permission and direct any questions to c.conway@elsevier.com.  Color artwork  Please make sure that artwork files are in an acceptable format (TIFF, JPEG, EPS, or MS Office files) and with the correct resolution. If, together EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 178  with your accepted article, you submit usable color figures then Elsevier will ensure, at no additional charge, that these figures will appear in color on the Web (e.g., ScienceDirect and other sites) regardless of whether or not these illustrations are reproduced in color in the printed version. For color reproduction in print, you will receive information regarding the costs from Elsevier after receipt of your accepted article. Please indicate your preference for color: in print or on the Web only. For further information on the preparation of electronic artwork, please see https://www.elsevier.com/about/policies-and-standards/author/artwork-and-media-instructions. Please note: Because of technical complications which can arise by converting color figures to 'gray scale' (for the printed version should you not opt for color in print) please submit in addition usable black and white versions of all the color illustrations.  Figure captions  Ensure that each illustration has a caption. Supply captions separately, not attached to the figure. A caption should comprise a brief title (not on the figure itself) and a description of the illustration. Keep text in the illustrations themselves to a minimum but explain all symbols and abbreviations used.  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 179  TABLES  Each table should be submitted as a separate file. Please ensure each table file is an editable Word document. They should be numbered according to their mention in the text. A concise title describing the table's content should be supplied for each table. All footnotes should appear immediately below the table, and all abbreviations not used in the text should be defined in a footnote. If a table or any data therein have been previously published, a footnote must give full credit to the original source with permission obtained. Please send the permission and direct any questions to c.conway@elsevier.com.  REFERENCES  Use the reference style of the Publication Manual of the American Psychological Association (7th ed., 2020). The reference list should appear on a separate page at the end of the text. Only references cited in the text should appear in this list.  Please know that Google Scholar does not vet articles that are included in searches. Thus, a predatory journal article may be included in your Google Scholar search, and you may have a predatory article in your submitted EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 180  work. It is your responsibility to check all references to be certain they are valid and have a DOI number prior to submission.  Citation in text  Please ensure that every reference cited in the text is also present in the reference list (and vice versa). Any references cited in the abstract must be given in full. If these references are included in the reference list they should follow the standard reference style of the journal and should include a substitution of the publication date with either 'Unpublished results' or 'Personal communication'. Citation of a reference as 'in press' implies that the item has been accepted for publication.  Reference links  Increased discoverability of research and high-quality peer review are ensured by online links to the sources cited. In order to allow us to create links to abstracting and indexing services, such as CrossRef and PubMed, please ensure that data provided in the references are correct. Please note that incorrect surnames, journal/book titles, publication year and pagination may prevent link creation. When copying references, please be careful as they may already contain errors. DOI numbers are required for all EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 181  references that have an assigned DOI number.  Web references  As a minimum, the full URL should be given. Any further information, if known (DOI, author names, dates, reference to a source publication, etc.), should also be given. Web references can be listed separately (e.g., after the reference list) under a different heading if desired, or can be included in the reference list.  Data references  This journal encourages you to cite underlying or relevant datasets in your manuscript by citing them in your text and including a data reference in your Reference List. Data references should include the following elements: author name(s), year, dataset title, data repository, version (where available), and global persistent identifier. Add [dataset] immediately before the reference so we can properly identify it as a data reference. This identifier will not appear in your published article.  Preprint references  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 182  Where a preprint has subsequently become available as a peer-reviewed publication, the formal publication should be used as the reference. If there are preprints that are central to your work or that cover crucial developments in the topic, but are not yet formally published, these may be referenced. Preprints should be clearly marked as such, for example by including the word preprint, or the name of the preprint server, as part of the reference. The preprint DOI should also be provided.  Reference management software  Most Elsevier journals have their reference template available in many of the most popular reference management software products. These include all products that support Citation Style Language styles, such as Mendeley. Using citation plug-ins from these products, authors only need to select the appropriate journal template when preparing their article, after which citations and bibliographies will be automatically formatted in the journal's style. If no template is yet available for this journal, please follow the format of the sample references and citations as shown in this Guide. If you use reference management software, please ensure that you remove all field codes before submitting the electronic manuscript. More information on how to remove field codes from different reference management software.  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 183  Reference style  Text: Citations in the text should follow the referencing style used by the American Psychological Association. You are referred to the Publication Manual of the American Psychological Association, Seventh Edition, ISBN 978-1-4338-3215-4, copies of which may be ordered from https://www.apa.org/pubs/books/publication-manual-7th-edition-hardcover or APA Publications Department, 750 First Street, NE Washington, DC 20002, USA or APA, 3 Henrietta Street, London, WC3E 8LU, UK. List: references should be arranged first alphabetically and then further sorted chronologically if necessary. More than one reference from the same author(s) in the same year must be identified by the letters 'a', 'b', 'c', etc., placed after the year of publication. Examples: Reference to a journal publication: Burka, S. D., Van Cleve, S. N., Shafer, S., & Barkin, J. L. (2014). At integration of pediatric mental health care: an evidence-based workshop for primary care providers. Journal of Pediatric Health Care, 28, 23–34. https://doi.org/10.1016/j.pedhc.2012.10.006 Reference to a chapter in an edited book: Mettam, G. R., & Adams, L. B. (2009). How to prepare an electronic version of your article. In B. S. Jones, & R. Z. Smith (Eds.), Introduction to the EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 184  electronic age (pp. 281–304). New York: E-Publishing Inc. Reference to a dataset: [dataset] Oguro, M., Imahiro, S., Saito, S., & Nakashizuka, T. (2015). Mortality data for Japanese oak wilt disease and surrounding forest composition [Mendeley Data, v1]. Retrieved from https://doi.org/10.17632/xwj98nb39r.1  Journal abbreviations source  Journal names should be abbreviated according to the list of title word abbreviations: http://www.issn.org/2-22661-LTWA-online.php.  VIDEO DATA  Elsevier accepts video material and animation sequences to support and enhance your scientific research. Authors who have video or animation files that they wish to submit with their article are strongly encouraged to include links to these within the body of the article. This can be done in the same way as a figure or table by referring to the video or animation content and noting in the body text where it should be placed. All submitted files should be properly labeled so that they directly relate to the video file's content. In order to ensure that your video or animation material is directly usable, EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 185  please provide the files in one of our recommended file formats with a preferred maximum size of 150 MB. Video and animation files supplied will be published online in the electronic version of your article in Elsevier Web products, including ScienceDirect: https://www.sciencedirect.com. Please supply 'stills' with your files: you can choose any frame from the video or animation or make a separate image. These will be used instead of standard icons and will personalize the link to your video data. For more detailed instructions please visit our video instruction pages at https://www.elsevier.com/artworkinstructions. Note: since video and animation cannot be embedded in the print version of the journal, please provide text for both the electronic and the print version for the portions of the article that refer to this content.  SUPPLEMENTARY MATERIALS  Supplementary data (i.e., multimedia files, additional images/datasets, etc.) to accompany your manuscript can be submitted. If the manuscript is accepted, such file(s) may appear with the online version of the article and the availability of the online file(s) will be noted in the printed version of the JPHC.  Research data EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 186   This journal encourages and enables you to share data that supports your research publication where appropriate, and enables you to interlink the data with your published articles. Research data refers to the results of observations or experimentation that validate research findings, which may also include software, code, models, algorithms, protocols, methods and other useful materials related to the project.  Below are a number of ways in which you can associate data with your article or make a statement about the availability of your data when submitting your manuscript. If you are sharing data in one of these ways, you are encouraged to cite the data in your manuscript and reference list. Please refer to the "References" section for more information about data citation. For more information on depositing, sharing and using research data and other relevant research materials, visit the research data page.  Data linking  If you have made your research data available in a data repository, you can link your article directly to the dataset. Elsevier collaborates with a number of repositories to link articles on ScienceDirect with relevant repositories, giving readers access to underlying data that gives them a better EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 187  understanding of the research described.  There are different ways to link your datasets to your article. When available, you can directly link your dataset to your article by providing the relevant information in the submission system. For more information, visit the database linking page.  For supported data repositories a repository banner will automatically appear next to your published article on ScienceDirect.  In addition, you can link to relevant data or entities through identifiers within the text of your manuscript, using the following format: Database: xxxx (e.g., TAIR: AT1G01020; CCDC: 734053; PDB: 1XFN).  Data statement  To foster transparency, we encourage you to state the availability of your data in your submission. This may be a requirement of your funding body or institution. If your data is unavailable to access or unsuitable to post, you will have the opportunity to indicate why during the submission process, for example by stating that the research data is confidential. The statement will appear with your published article on ScienceDirect. For more information, EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 188  visit the Data Statement page.  SUBMISSION CHECKLIST  The following list will be useful during the final checking of an article prior to sending it to the journal for review. Please consult this Guide for Authors for further details of any item. Please include the following statement as a disclosure in your manuscript: "I am submitting this manuscript using the appropriate reporting standards for my work," e.g., CONSORT for a randomized controlled trial (RCT). Ensure that the following items are present: One author has been designated as the corresponding author with contact details: • E-mail address • Full postal address • Phone numbers All necessary files have been uploaded, and contain: • Keywords • All figure captions • All tables (including title, description, footnotes) in separate, editable Word files Further considerations EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 189  • Manuscript has been 'spell-checked' and 'grammar-checked' • References are in the correct format for this journal • All references mentioned in the Reference list are cited in the text, and vice versa • Permission has been obtained for use of copyrighted material from other sources (including the Web) • Color figures are clearly marked as being intended for color reproduction on the Web (free of charge) and in print, or to be reproduced in color on the Web (free of charge) and in black-and-white in print • If only color on the Web is required, black-and-white versions of the figures are also supplied for printing purposes • Anonymous author disclosures: In addition to the regular author disclosures provided, for the purpose of making any disclosures available to the reviewers, please provide the disclosures anonymously as well (i.e., with author names excluded) Please include an author contribution statement immediately preceding the Reference List in the following format: AUTHOR CONTRIBUTIONS E. A. D. and E. S. conceptualization; E. A. D., H. L., and E. S. resources; E. A. D., Y. L., Z. S., H. L., and E. S. data curation; E. A. D. formal analysis; E. A. D., Y. L., and E. S. supervision; E. A. D. and E. S. funding acquisition; E. A. D. validation; E. A. D. and Z. S. investigation; E. A. D. visualization; E. A. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 190  D. and Y. L. methodology; E. A. D. writing-original draft; E. A. D. and E. S. project administration; E. A. D., Y. L., and E. S. writing-review and editing. For any further information please visit our customer support site at https://service.elsevier.com.     Proofs  One set of page proofs (as PDF files) will be sent by e-mail to the corresponding author, or a link will be provided in the e-mail so that authors can download the files themselves. 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For an extra charge, paper offprints can be ordered via the offprint order form which is sent once the article is accepted for publication. Corresponding authors who have published their article gold open access do not receive a Share Link as their final published version of the article is available open access on ScienceDirect and can be shared through the article DOI link.   Visit the Elsevier Support Center to find the answers you need. Here you will find everything from Frequently Asked Questions to ways to get in touch. You can also check the status of your submitted article or find out when your accepted article will be published. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 193                   Appendix 2: Quality Criteria of Included Studies CASP Quality Appraisal Checklist for Qualitative Studies (CASP, 2018)  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 194  Author Q1. Q2 Q3. Q4. Q5. Q6. Q7. Q8. Q9. Q10. Carlisle et al. (2022)  Yes Yes Yes Yes Yes No Yes  Yes Yes Yes  Lerrett et al. (2016) Yes  Yes Can’t tell Yes Yes  No No  Can’t tell Yes Yes Waite et al. (2022) Yes  Yes Yes Yes Yes Yes Yes Yes Yes Yes Almoajil et al. (2022) Yes Yes Can’t tell Yes Yes No  Yes  Yes Yes Yes   Papiez et al. (2021)  Yes Yes Yes Yes Yes Can’t tell Yes . Yes  Yes Yes  Boss et al. (2017) Yes Yes Yes Yes Yes No Yes  Yes Yes   Yes Heath et al. (2016)  Yes Yes Yes Yes Yes No Yes Yes Yes Yes Lecouturier et al. (2015)  Yes Yes Cant tell Yes Yes No Yes Yes Can’t tell  Yes Samata et al. (2022) Yes Yes Yes Yes Yes No Yes Yes Yes Yes Smith et al. (2013b) Yes Yes Yes Yes Yes No Yes Yes Yes No  Timmermans et al (2018).   Yes  Yes  Yes  No  Yes  No  Can’t tell.  Yes  Yes  Yes Sjoberg et al. (2015). Yes Yes Yes Yes Yes No Yes Yes Yes Yes  CASP Quality Appraisal Checklist for Cohort Studies (CASP, 2018)  Author  Q1  Q2  Q3  Q4  Q5 A & B  Q6 A & B  Q7  Q8  Q9  Q10  Q11  Q12  Links et al., (2020)  Yes  Yes  Yes   Yes   No Can’t tell  No Yes  Yes  Yes     Yes  No   Yes  Yes   JBI Critical Appraisal Checklist for Case Reports (JBI, 2020)  Author Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Rating EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 195  Loeff & Shakhsheer (2021) Yes Yes Yes Yes Yes N/A  No/Unclear Yes Low  JBI Critical Appraisal Checklist for Systematic Reviews and Research Syntheses (JBI, 2020)   Author  Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 Q11 Rating Atsaidis et al., (2022).  Yes  Yes  Yes  Yes  Yes   Unclear  Yes   Unclear  N/A  Yes  No  Medium  Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies – NHLBI, NIH (2013)  Author Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 Q11 Q12 Q13 Q14 Rating Leu et al., (2021)  Y   N  N  CD  N   Y  N/A  N/A  N  N/A   Y  N/A  N/A  Y  Poor  Mixed Methods Appraisal Tool (MMAT, Hong et al., 2018)  Author and Year Q1 Q2 Q3 Q4 Q5 Smith et al., (2013c) Yes No No Yes – no divergence. Yes          Appendix 3: CASP Checlist for appraising Qualitative Studies EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 196                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 197                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 198                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 199                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 200                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 201                    Appendix 4: CASP Checklist for Appraising Cohort Studies EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 202                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 203                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 204                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 205     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 206                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 207                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 208                    Appendix 5: JBI Checklist for Appraising Case Reports EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 209                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 210                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 211                    Appendix 6: JBI Checklist for Systematic Reviews and Research Syntheses EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 212                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 213                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 214                     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 215         EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 216  Appendix 7: NHLBI Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies            Guidance for Assessing the Quality of Observational Cohort and Cross-Sectional Studies The guidance document below is organized by question number from the tool for quality assessment of observational cohort and cross-sectional studies. Question 1. Research question Did the authors describe their goal in conducting this research? Is it easy to understand what they were looking to find? This issue is important for any scientific paper of any type. Higher quality scientific research explicitly defines a research question. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 217  Questions 2 and 3. Study population Did the authors describe the group of people from which the study participants were selected or recruited, using demographics, location, and time period? If you were to conduct this study again, would you know who to recruit, from where, and from what time period? Is the cohort population free of the outcomes of interest at the time they were recruited? An example would be men over 40 years old with type 2 diabetes who began seeking medical care at Phoenix Good Samaritan Hospital between January 1, 1990 and December 31, 1994. In this example, the population is clearly described as: (1) who (men over 40 years old with type 2 diabetes); (2) where (Phoenix Good Samaritan Hospital); and (3) when (between January 1, 1990 and December 31, 1994). Another example is women ages 34 to 59 years of age in 1980 who were in the nursing profession and had no known coronary disease, stroke, cancer, hypercholesterolemia, or diabetes, and were recruited from the 11 most populous States, with contact information obtained from State nursing boards. In cohort studies, it is crucial that the population at baseline is free of the outcome of interest. For example, the nurses' population above would be an appropriate group in which to study incident coronary disease. This information is usually found either in descriptions of population recruitment, definitions of variables, or inclusion/exclusion criteria. You may need to look at prior papers on methods in order to make the assessment for this question. Those papers are usually in the reference list. If fewer than 50% of eligible persons participated in the study, then there is concern that the study population does not adequately represent the target population. This increases the risk of bias. Question 4. Groups recruited from the same population and uniform eligibility criteria Were the inclusion and exclusion criteria developed prior to recruitment or selection of the study population? Were the same underlying criteria used for all of the subjects involved? This issue is related to the description EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 218  of the study population, above, and you may find the information for both of these questions in the same section of the paper. Most cohort studies begin with the selection of the cohort; participants in this cohort are then measured or evaluated to determine their exposure status. However, some cohort studies may recruit or select exposed participants in a different time or place than unexposed participants, especially retrospective cohort studies–which is when data are obtained from the past (retrospectively), but the analysis examines exposures prior to outcomes. For example, one research question could be whether diabetic men with clinical depression are at higher risk for cardiovascular disease than those without clinical depression. So, diabetic men with depression might be selected from a mental health clinic, while diabetic men without depression might be selected from an internal medicine or endocrinology clinic. This study recruits groups from different clinic populations, so this example would get a "no." However, the women nurses described in the question above were selected based on the same inclusion/exclusion criteria, so that example would get a "yes." Question 5. Sample size justification Did the authors present their reasons for selecting or recruiting the number of people included or analyzed? Do they note or discuss the statistical power of the study? This question is about whether or not the study had enough participants to detect an association if one truly existed. A paragraph in the methods section of the article may explain the sample size needed to detect a hypothesized difference in outcomes. You may also find a discussion of power in the discussion section (such as the study had 85 percent power to detect a 20 percent increase in the rate of an outcome of interest, with a 2-sided alpha of 0.05). Sometimes estimates of variance and/or estimates of effect size are given, instead of sample size calculations. In any of these cases, the answer would be "yes." However, observational cohort studies often do not report anything about power or sample sizes because the analyses are exploratory in nature. In this case, the answer would be "no." This is not a "fatal flaw." It just may indicate that attention was not paid to whether the study was sufficiently EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 219  sized to answer a prespecified question–i.e., it may have been an exploratory, hypothesis-generating study. Question 6. Exposure assessed prior to outcome measurement This question is important because, in order to determine whether an exposure causes an outcome, the exposure must come before the outcome. For some prospective cohort studies, the investigator enrolls the cohort and then determines the exposure status of various members of the cohort (large epidemiological studies like Framingham used this approach). However, for other cohort studies, the cohort is selected based on its exposure status, as in the example above of depressed diabetic men (the exposure being depression). Other examples include a cohort identified by its exposure to fluoridated drinking water and then compared to a cohort living in an area without fluoridated water, or a cohort of military personnel exposed to combat in the Gulf War compared to a cohort of military personnel not deployed in a combat zone. With either of these types of cohort studies, the cohort is followed forward in time (i.e., prospectively) to assess the outcomes that occurred in the exposed members compared to nonexposed members of the cohort. Therefore, you begin the study in the present by looking at groups that were exposed (or not) to some biological or behavioral factor, intervention, etc., and then you follow them forward in time to examine outcomes. If a cohort study is conducted properly, the answer to this question should be "yes," since the exposure status of members of the cohort was determined at the beginning of the study before the outcomes occurred. For retrospective cohort studies, the same principal applies. The difference is that, rather than identifying a cohort in the present and following them forward in time, the investigators go back in time (i.e., retrospectively) and select a cohort based on their exposure status in the past and then follow them forward to assess the outcomes that occurred in the exposed and nonexposed cohort members. Because in retrospective cohort studies the exposure and outcomes may have already occurred (it depends on how long they follow the cohort), it is important to make sure that the exposure preceded the outcome. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 220  Sometimes cross-sectional studies are conducted (or cross-sectional analyses of cohort-study data), where the exposures and outcomes are measured during the same timeframe. As a result, cross-sectional analyses provide weaker evidence than regular cohort studies regarding a potential causal relationship between exposures and outcomes. For cross-sectional analyses, the answer to Question 6 should be "no." Question 7. Sufficient timeframe to see an effect Did the study allow enough time for a sufficient number of outcomes to occur or be observed, or enough time for an exposure to have a biological effect on an outcome? In the examples given above, if clinical depression has a biological effect on increasing risk for CVD, such an effect may take years. In the other example, if higher dietary sodium increases BP, a short timeframe may be sufficient to assess its association with BP, but a longer timeframe would be needed to examine its association with heart attacks. The issue of timeframe is important to enable meaningful analysis of the relationships between exposures and outcomes to be conducted. This often requires at least several years, especially when looking at health outcomes, but it depends on the research question and outcomes being examined. Cross-sectional analyses allow no time to see an effect, since the exposures and outcomes are assessed at the same time, so those would get a "no" response. Question 8. Different levels of the exposure of interest If the exposure can be defined as a range (examples: drug dosage, amount of physical activity, amount of sodium consumed), were multiple categories of that exposure assessed? (for example, for drugs: not on the medication, on a low dose, medium dose, high dose; for dietary sodium, higher than average U.S. consumption, lower than recommended consumption, between the two). Sometimes discrete categories of exposure are not used, but instead exposures are measured as continuous variables (for example, mg/day of dietary sodium or BP values). In any case, studying different levels of exposure (where possible) enables investigators to assess trends or dose-response relationships between EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 221  exposures and outcomes–e.g., the higher the exposure, the greater the rate of the health outcome. The presence of trends or dose-response relationships lends credibility to the hypothesis of causality between exposure and outcome. For some exposures, however, this question may not be applicable (e.g., the exposure may be a dichotomous variable like living in a rural setting versus an urban setting, or vaccinated/not vaccinated with a one-time vaccine). If there are only two possible exposures (yes/no), then this question should be given an "NA," and it should not count negatively towards the quality rating. Question 9. Exposure measures and assessment Were the exposure measures defined in detail? Were the tools or methods used to measure exposure accurate and reliable–for example, have they been validated or are they objective? This issue is important as it influences confidence in the reported exposures. When exposures are measured with less accuracy or validity, it is harder to see an association between exposure and outcome even if one exists. Also as important is whether the exposures were assessed in the same manner within groups and between groups; if not, bias may result. For example, retrospective self-report of dietary salt intake is not as valid and reliable as prospectively using a standardized dietary log plus testing participants' urine for sodium content. Another example is measurement of BP, where there may be quite a difference between usual care, where clinicians measure BP however it is done in their practice setting (which can vary considerably), and use of trained BP assessors using standardized equipment (e.g., the same BP device which has been tested and calibrated) and a standardized protocol (e.g., patient is seated for 5 minutes with feet flat on the floor, BP is taken twice in each arm, and all four measurements are averaged). In each of these cases, the former would get a "no" and the latter a "yes." Here is a final example that illustrates the point about why it is important to assess exposures consistently across all groups: If people with higher BP (exposed cohort) are seen by their providers more frequently than those without elevated BP (nonexposed group), it also increases the chances of detecting and documenting changes in health outcomes, including CVD-related events. Therefore, it may lead to the conclusion that EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 222  higher BP leads to more CVD events. This may be true, but it could also be due to the fact that the subjects with higher BP were seen more often; thus, more CVD-related events were detected and documented simply because they had more encounters with the health care system. Thus, it could bias the results and lead to an erroneous conclusion. Question 10. Repeated exposure assessment Was the exposure for each person measured more than once during the course of the study period? Multiple measurements with the same result increase our confidence that the exposure status was correctly classified. Also, multiple measurements enable investigators to look at changes in exposure over time, for example, people who ate high dietary sodium throughout the followup period, compared to those who started out high then reduced their intake, compared to those who ate low sodium throughout. Once again, this may not be applicable in all cases. In many older studies, exposure was measured only at baseline. However, multiple exposure measurements do result in a stronger study design. Question 11. Outcome measures Were the outcomes defined in detail? Were the tools or methods for measuring outcomes accurate and reliable–for example, have they been validated or are they objective? This issue is important because it influences confidence in the validity of study results. Also important is whether the outcomes were assessed in the same manner within groups and between groups. An example of an outcome measure that is objective, accurate, and reliable is death–the outcome measured with more accuracy than any other. But even with a measure as objective as death, there can be differences in the accuracy and reliability of how death was assessed by the investigators. Did they base it on an autopsy report, death certificate, death registry, or report from a family member? Another example is a study of whether dietary fat intake is related to blood cholesterol level (cholesterol level being the outcome), and the cholesterol level is measured from fasting blood samples that are all sent to the same laboratory. These examples would get a "yes." An example of a "no" would be self-report by subjects that they had a heart attack, or self-report of how much they weigh (if body weight is the outcome of interest). EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 223  Similar to the example in Question 9, results may be biased if one group (e.g., people with high BP) is seen more frequently than another group (people with normal BP) because more frequent encounters with the health care system increases the chances of outcomes being detected and documented. Question 12. Blinding of outcome assessors Blinding means that outcome assessors did not know whether the participant was exposed or unexposed. It is also sometimes called "masking." The objective is to look for evidence in the article that the person(s) assessing the outcome(s) for the study (for example, examining medical records to determine the outcomes that occurred in the exposed and comparison groups) is masked to the exposure status of the participant. Sometimes the person measuring the exposure is the same person conducting the outcome assessment. In this case, the outcome assessor would most likely not be blinded to exposure status because they also took measurements of exposures. If so, make a note of that in the comments section. As you assess this criterion, think about whether it is likely that the person(s) doing the outcome assessment would know (or be able to figure out) the exposure status of the study participants. If the answer is no, then blinding is adequate. An example of adequate blinding of the outcome assessors is to create a separate committee, whose members were not involved in the care of the patient and had no information about the study participants' exposure status. The committee would then be provided with copies of participants' medical records, which had been stripped of any potential exposure information or personally identifiable information. The committee would then review the records for prespecified outcomes according to the study protocol. If blinding was not possible, which is sometimes the case, mark "NA" and explain the potential for bias. Question 13. Followup rate Higher overall followup rates are always better than lower followup rates, even though higher rates are expected in shorter studies, whereas lower overall followup rates are often seen in studies of longer duration. Usually, an acceptable overall followup rate is considered 80 percent or more of participants whose exposures were measured at baseline. However, this is just a general guideline. For example, a 6-month cohort study examining EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 224  the relationship between dietary sodium intake and BP level may have over 90 percent followup, but a 20-year cohort study examining effects of sodium intake on stroke may have only a 65 percent followup rate. Question 14. Statistical analyses Were key potential confounding variables measured and adjusted for, such as by statistical adjustment for baseline differences? Logistic regression or other regression methods are often used to account for the influence of variables not of interest. This is a key issue in cohort studies, because statistical analyses need to control for potential confounders, in contrast to an RCT, where the randomization process controls for potential confounders. All key factors that may be associated both with the exposure of interest and the outcome–that are not of interest to the research question–should be controlled for in the analyses. For example, in a study of the relationship between cardiorespiratory fitness and CVD events (heart attacks and strokes), the study should control for age, BP, blood cholesterol, and body weight, because all of these factors are associated both with low fitness and with CVD events. Well-done cohort studies control for multiple potential confounders. Some general guidance for determining the overall quality rating of observational cohort and cross-sectional studies The questions on the form are designed to help you focus on the key concepts for evaluating the internal validity of a study. They are not intended to create a list that you simply tally up to arrive at a summary judgment of quality. Internal validity for cohort studies is the extent to which the results reported in the study can truly be attributed to the exposure being evaluated and not to flaws in the design or conduct of the study–in other words, the ability of the study to draw associative conclusions about the effects of the exposures being studied on outcomes. Any such flaws can increase the risk of bias. Critical appraisal involves considering the risk of potential for selection bias, information bias, measurement bias, or confounding (the mixture of EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 225  exposures that one cannot tease out from each other). Examples of confounding include co-interventions, differences at baseline in patient characteristics, and other issues throughout the questions above. High risk of bias translates to a rating of poor quality. Low risk of bias translates to a rating of good quality. (Thus, the greater the risk of bias, the lower the quality rating of the study.) In addition, the more attention in the study design to issues that can help determine whether there is a causal relationship between the exposure and outcome, the higher quality the study. These include exposures occurring prior to outcomes, evaluation of a dose-response gradient, accuracy of measurement of both exposure and outcome, sufficient timeframe to see an effect, and appropriate control for confounding–all concepts reflected in the tool. Generally, when you evaluate a study, you will not see a "fatal flaw," but you will find some risk of bias. By focusing on the concepts underlying the questions in the quality assessment tool, you should ask yourself about the potential for bias in the study you are critically appraising. For any box where you check "no" you should ask, "What is the potential risk of bias resulting from this flaw in study design or execution?" That is, does this factor cause you to doubt the results that are reported in the study or doubt the ability of the study to accurately assess an association between exposure and outcome? The best approach is to think about the questions in the tool and how each one tells you something about the potential for bias in a study. The more you familiarize yourself with the key concepts, the more comfortable you will be with critical appraisal. Examples of studies rated good, fair, and poor are useful, but each study must be assessed on its own based on the details that are reported and consideration of the concepts for minimizing bias.     EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 226  Appendix 8: Mixed Methods Appraisal Tool (MMAT) guidance and scoring                   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 227                      EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 228  Appendix 9. The Cleft Palate-Craniofacial Journal submission guidelines             1. What do we publish? 1.1 Aims & Scope Before submitting your manuscript to CPCJ, please ensure you have read the Aims & Scope. CPCJ publishes manuscripts of the highest scientific quality on all topics related to orofacial clefts and other craniofacial anomalies to advance the global education of scientists and clinicians. Only manuscripts of sufficient quality that meet the aims and scope of The Cleft Palate Craniofacial Journal (CPCJ) will be reviewed. CPCJ is directed to a multidisciplinary readership of clinicians and scientists interested in craniofacial anomalies, including cleft lip and cleft palate. 1.2 Article Types 1. What do we publish? 1.1 Aims & Scope 1.2 Article types 1.3 Writing your paper 2. Editorial policies 2.1 Peer review policy 2.2 Authorship 2.3 Writing assistance 2.4 Artificial Intelligence 2.5 Funding Disclosure 2.6 Declaration of conflicting interests 2.7 Research ethics and patient consent 2.8 Clinical trials 2.9 Reporting guidelines 2.10 Research Data 2.11 Cover letter EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 229  3. Publishing policies 3.1 Publication ethics 3.2 Contributor's publishing agreement 3.3 Open access and author archiving 4. Preparing and submitting your manuscript 4.1 File format 4.2 Make your article discoverable 4.3 Identifiable information 4.4 Use of “Patient-First” Language 4.5 Avoiding Priority Claims 4.6 Manuscript files to be uploaded 4.7 English language editing services 4.8 ORCID 4.9 Permissions 5. On acceptance and publication 5.1 Sage Production 5.2 Online First publication 5.3 Access to your published article 5.4 Promoting your article 6. Further information 7. Appealing the publication decision  Research PRISMA checklist CONSORT checklist EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 230   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 231     Clinical Review and Education        EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 232  Opinion  1.3 Writing your paper The Sage Author Gateway has some general advice and on how to get published, plus links to further resources. Sage Author Services also offers authors a variety of ways to improve and enhance their article including English language editing, plagiarism detection, and video abstract and infographic preparation. Back to top 2. Editorial policies 2.1 Peer review policy EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 233  When a manuscript is submitted, CPCJ editorial staff perform and initial evaluation according to the following criteria: material is original and timely, writing is clear, study methods are appropriate, data are valid, conclusions are reasonable and supported by the data, information is important, and topic has general interest to readers of this journal. From these basic criteria, the editors assess a paper's suitability for publication. Suitable manuscripts are sent to expert consultants for peer review. Manuscripts deemed unsuitable for publication are rejected promptly. Two independent peer reviews are typically solicited. At the discretion of the Section Editor, a third review may be requested and/or a review by a biostatistician may also be solicited. The Editor is responsible for all final decisions regarding acceptance or rejection, recommendations for revision, and final editing. Manuscripts will be evaluated according to various criteria, including scientific methodology, level of evidence, novelty, clarity, and conciseness. Accepted articles describing novel findings or methods with high levels of evidence may be advanced in the publication queue at the discretion of the Editor.  All submitted articles are "double-anonymized" to ensure an unbiased review. Reviewers will not have access to author names or affiliations. Authors will not have access to reviewer names or affiliations. The Editor or members of the Editorial Board may occasionally submit their own manuscripts for possible publication in the journal. In these cases, the peer review process will be managed by alternative members of the Board and the submitting Editor/Board member will have no involvement in the decision-making process. CPCJ is committed to delivering high quality, fast peer-review for your paper, and as such has partnered with Publons. Publons is a third-party service that seeks to track, verify and give credit for peer review. Reviewers for CPCJ can opt in to Publons in order to claim their reviews or have them automatically verified and added to their reviewer profile. Reviewers claiming credit for their review will be associated with the relevant journal, but the article name, reviewer’s decision and the content of their review is not published on the site. For more information visit the Publons website. Reviewers for CPCJ have the option to invite a Reviewer in Training (a graduate student, postdoctoral fellow, early-career research assistant or associate) to serve as a co-reviewer. This program is completely optional. This opportunity is afforded as an educational experience to the Reviewer in Training. The quality of the review is the responsibility of the lead reviewer and not of the Reviewer in Training. The Reviewer in Training will not receive any communications about the manuscript. The use of the contact information for the Reviewer in Training may be used to invite and authorize reviewer roles in the future. If the mentee wishes to be recognized in Publons, the lead reviewer can forward the email that certifies they completed the review to the mentee and then the mentee can send that to Publons. If you worked with a reviewer in training and wish to give them credit, please complete the survey here: https://survey.alchemer.com/s3/7392813/CPCJ-Reviewer-Scoresheet 2.2 Authorship EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 234  Papers should only be submitted for consideration once consent is given by all contributing authors. Those submitting papers should carefully check that all those whose work contributed to the paper are acknowledged as contributing authors.  The list of authors should include all those who can legitimately claim authorship. This is all those who: 1. Made a substantial contribution to the concept or design of the work; or acquisition, analysis or interpretation of data, 2. Drafted the article or revised it critically for important intellectual content, 3. Approved the version to be published,  4. Participated sufficiently in the work to take public responsibility for appropriate portions of the content. The corresponding author must declare his or her contribution to the manuscript by signing the copyright transfer form on behalf of all authors. Authors should meet the conditions of all the points above. CPCJ follows authorship guidelines as outlined by the International Committee of Medical Journal Editors (ICMJE). Only those involved in writing the paper should be included in the author line. Others should be listed as a footnote or acknowledgment. These authors will be indexed in PubMed as full authors. The CPCJ allows research groups to be recognized in submitted manuscripts. Authors should identify both the group name and the individual authors who accept responsibility for the article (e.g., Smith A, Johnson R, Williams T; The CleftCran Research Group). The named individuals must meet the full criteria and requirements for authorship as described above. Other research group members who do not qualify for authorship may be listed in an Acknowledgement. Acquisition of funding, collection of data, or general supervision of the research group alone does not constitute authorship, although all contributors who do not meet the criteria for authorship should be listed in the Acknowledgments section. Please refer to the International Committee of Medical Journal Editors (ICMJE) authorship guidelines for more information on authorship. Authors should determine the order of authorship among themselves and should settle any disagreements before submitting their manuscript. Changes in authorship (ie, order, addition, and deletion of authors) should be discussed and approved by all authors. Any requests for such changes in authorship after initial manuscript submission and before publication should be explained in writing to the editor in a letter or email from all authors. Please note that AI chatbots, for example ChatGPT, should not be listed as authors. For more information see the policy on Use of ChatGPT and generative AI tools. 2.3 Writing assistance Individuals who provided writing assistance, e.g., from a specialist communications company, do not qualify as authors and so should be included in the Acknowledgements EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 235  section. Authors must disclose any writing assistance – including the individual’s name, company and level of input – and identify the entity that paid for this assistance. It is not necessary to disclose use of language polishing services. 2.4 Artificial Intelligence Use of Large Language Models and generative AI tools in writing your submission Sage recognizes the value of large language models (LLMs) (e.g. ChatGPT) and generative AI as productivity tools that can help authors in preparing their article for submission; to generate initial ideas for a structure, for example, or when summarizing, paraphrasing, language polishing etc. However, it is important to note that all language models have limitations and are unable to replicate human creative and critical thinking. Human intervention with these tools is essential to ensure that content presented is accurate and appropriate to the reader. Sage therefore requires authors to be aware of the limitations of language models and to consider these in any use of LLMs in their submissions: Objectivity: Previously published content that contains racist, sexist or other biases can be present in LLM-generated text, and minority viewpoints may not be represented. Use of LLMs has the potential to perpetuate these biases because the information is decontextualized and harder to detect. Accuracy: LLMs can ‘hallucinate’ i.e. generate false content, especially when used outside of their domain or when dealing with complex or ambiguous topics. They can generate content that is linguistically but not scientifically plausible, they can get facts wrong, and they have been shown to generate citations that don’t exist. Some LLMs are only trained on content published before a particular date and therefore present an incomplete picture. Contextual understanding: LLMs cannot apply human understanding to the context of a piece of text, especially when dealing with idiomatic expressions, sarcasm, humor, or metaphorical language. This can lead to errors or misinterpretations in the generated content. Training data: LLMs require a large amount of high-quality training data to achieve optimal performance. However, in some domains or languages, such data may not be readily available, limiting the usefulness of the model. Guidance for authors Authors are required to: 1. Clearly indicate the use of language models in the manuscript, including which model was used and for what purpose. Please use the methods or acknowledgements section, as appropriate. 2. Verify the accuracy, validity, and appropriateness of the content and any citations generated by language models and correct any errors or inconsistencies. 3. Provide a list of sources used to generate content and citations, including those generated by language models. Double-check citations to ensure they are accurate, and are properly referenced. 4. Be conscious of the potential for plagiarism where the LLM may have reproduced substantial text from other sources. Check the original sources to be sure you are not plagiarizing someone else’s work. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 236  5. Acknowledge the limitations of language models in the manuscript, including the potential for bias, errors, and gaps in knowledge. 6. Please note that AI bots such as ChatGPT should not be listed as an author on your submission. We will take appropriate corrective action where we identify published articles with undisclosed use of such tools. 2.5 Funding Disclosure CPCJ requires all authors to report their funding. Authors will be asked to disclose any sources of funding during submission. Be sure to include all relevant grant numbers and the names of the granting agencies. This information will be used to generate a funding statement that will appear at the end of the manuscript. Funding information should not be included in the acknowledgements or manuscript text because it can compromise anonymity during peer review. 2.6 Declaration of conflicting interests It is the policy of CPCJ to require a declaration of conflicting interests from all authors enabling a statement to be carried within the paginated pages of all published articles. Authors are required to disclose, on the title page included with the submission, any relevant conflict of interest, including direct or indirect financial interests they may have in the materials or subject matter dealt with in the manuscript. This information will be held in confidence by the Editor during the review process but will be included in publication of an accepted manuscript. If no conflict exists, please state that ‘The Author(s) declare(s) that there is no conflict of interest’. For guidance on conflict of interest statements, please see the ICMJE recommendations here. 2.7 Research ethics and patient consent Medical research involving human subjects must be conducted according to the World Medical Association Declaration of Helsinki. Compliance with these guidelines should be indicated in the Methods section of the manuscript, along with Institutional Review Board approval if appropriate. Submitted manuscripts should conform to the ICMJE Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals, and all papers reporting animal and/or human studies must state in the methods section that the relevant Ethics Committee or Institutional Review Board (IRB) provided (or waived) approval. Please ensure that you have provided the full name and institution of the review committee, in addition to the approval number. While informed consent might not be required for consecutive case series and/or retrospective chart review reports, these are still considered research given that the objective of your report is to generalize the findings. As such, they require Humans Subjects Review Board approval. If IRB approval is not available, the authors must state so in a cover letter accompanying the submission and include a statement in the manuscript that principles outlined in the Declaration of Helsinki were followed. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 237  For research articles, authors are also required to state in the methods section whether participants provided informed consent and whether the consent was written or verbal. Information on informed consent to report individual cases or case series should be included in the manuscript text. A statement is required regarding whether written informed consent for patient information and images to be published was provided by the patient(s) or a legally authorized representative. The author is responsible for ensuring the anonymity of protection of any individual depicted in a manuscript. A signed permission form must be obtained for any recognizable individual appearing in manuscript figures. Shading of the eyes is not an acceptable means of rendering an individual unrecognizable. If an author chooses to use his/her own institutional patient permission form, it must include permission to use photographs for all types of publication including but not limited to print, visual, electronic, or broadcast media. Please also refer to the ICMJE Recommendations for the Protection of Research Participants. All research involving animals submitted for publication must be approved by an ethics committee with oversight of the facility in which the studies were conducted. The Journal has adopted the ARRIVE guidelines. 2.8 Clinical trials CPCJ endorses the ICMJE requirement that clinical trials are registered in a WHO-approved public trials registry at or before the time of first patient enrolment. However, consistent with the AllTrials campaign, retrospectively registered trials will be considered if the justification for late registration is acceptable. The trial registry name and URL, and registration number must be included at the end of the abstract. 2.9 Reporting guidelines The relevant EQUATOR Network reporting guidelines should be followed depending on the type of study. For example, all randomized controlled trials submitted for publication should include a completed CONSORT flow chart as a cited figure and the completed CONSORT checklist should be uploaded with your submission as a supplementary file. Systematic reviews and meta-analyses should include the completed PRISMA flow chart as a cited figure and the completed PRISMA checklist should be uploaded with your submission as a supplementary file. The EQUATOR wizard can help you identify the appropriate guideline. Other resources can be found at NLM’s Research Reporting Guidelines and Initiatives. 2.10 Research data At Sage we are committed to facilitating openness, transparency and reproducibility of research. Where relevant, CPCJ requests all authors submit any primary data used in their research articles alongside their article submissions to be published in the online version of the journal or provide detailed information in their articles on how the data can be obtained. This information should include links to third-party data repositories or detailed contact information for third-party data sources. Data available only on an author-maintained website will need to be loaded onto either the journal’s platform or a third-party platform to ensure continuing accessibility. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 238  Examples of data types include but are not limited to statistical data files, replication code, text files, audio files, images, videos, appendices, and additional charts and graphs necessary to understand the original research. The editor may consider limited embargoes on proprietary data. The editor can also grant exceptions for data that cannot legally or ethically be released. All data submitted should comply with Institutional or Ethical Review Board requirements and applicable government regulations. Authors should also follow data citation principles. For more information please visit the Sage Author Gateway, which includes information about Sage’s partnership with the data repository Figshare. Author have the option of including a data availability statement during the submission process. 2.11 Cover letter Cover letters are required when addressing topics such as IRB exceptions (Sect 2.6) or anything related to third-party submissions (Sect 4.6.1).  If none of these situations apply, then cover letters are optional. However, CPCJ encourages cover letters if authors have special information they wish to declare or disclose. For example, authors may wish to outline why their research is innovative or novel. The manuscript submission system requires that cover letters be submitted as Microsoft Word documents. Back to top 3. Publishing Policies 3.1 Publication ethics Sage is committed to upholding the integrity of the academic record. We encourage authors to refer to the Committee on Publication Ethics’ International Standards for Authors and view the Publication Ethics page on the Sage Author Gateway. 3.1.1 Plagiarism The Cleft Palate Craniofacial Journal (CPCJ) and Sage take issues of copyright infringement, plagiarism or other breaches of best practice in publication very seriously. We seek to protect the rights of our authors and we always investigate claims of plagiarism or misuse of published articles. Equally, we seek to protect the reputation of the journal against malpractice. Submitted articles may be checked with duplication-checking software. Where an article, for example, is found to have plagiarised other work or included third-party copyright material without permission or with insufficient acknowledgement, or where the authorship of the article is contested, we reserve the right to take action including, but not limited to: publishing an erratum or corrigendum (correction); retracting the article; taking up the matter with the head of department or dean of the author's institution and/or relevant academic bodies or societies; or taking appropriate legal action. 3.1.2 Prior publication EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 239  If material has been previously published it is not generally acceptable for publication in a Sage journal. However, there are certain circumstances where previously published material can be considered for publication. Please refer to the guidance on the Sage Author Gateway or if in doubt, contact the Editor at the address given below. Please note as part of the submission process you will be required to warrant that you are submitting your original work, that you have the rights, that you have obtained and can supply all necessary permissions for the reproduction of any copyright works not owned by you, that you are submitting the work for first publication in the Journal, and that it is not being considered for publication elsewhere and has not already been published elsewhere. \ Note that the Journal may accept submissions of papers that have been posted on pre-print servers; include the DOI for the preprint in the designated field during the submission process. Authors should not post an updated version of their paper on the preprint server while it is being peer reviewed for possible publication in the journal. If the article is accepted for publication, the author may re-use their work according to the Journal’s author archiving policy. If your paper is accepted, you must include a link on your preprint to the final version of your paper. 3.2 Contributor's publishing agreement Before publication, Sage requires the author as the rights holder to sign a Journal Contributor’s Publishing Agreement. Sage’s Journal Contributor’s Publishing Agreement is an exclusive licence agreement which means that the author retains copyright in the work but grants Sage the sole and exclusive right and licence to publish for the full legal term of copyright. Exceptions may exist where an assignment of copyright is required or preferred by a proprietor other than Sage. In this case copyright in the work will be assigned from the author to the society. For more information please visit the Sage Author Gateway. 3.3 Open access and author archiving CPCJ offers optional open access publishing via the Sage Choice programme and Open Access agreements, where authors can publish open access either discounted or free of charge depending on the agreement with Sage. Find out if your institution is participating by visiting Open Access Agreements at Sage. For more information on Open Access publishing options at Sage please visit Sage Open Access. For information on funding body compliance, and depositing your article in repositories, please visit Sage’s Author Archiving and Re-Use Guidelines and Publishing Policies. 4. Preparing your manuscript for submission CPCJ is hosted on Sage Track, a web based online submission and peer review system powered by ScholarOne™ Manuscripts. Visit https://mc.manuscriptcentral.com/cpcj to login and submit your article online. IMPORTANT: Please check whether you already have an account in the system before trying to create a new one. If you have reviewed or authored for the journal in the past year it is EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 240  likely that you will have had an account created. For further guidance on submitting your manuscript online, please visit ScholarOne. Before entering the online manuscript submission system, please be sure the following elements are on hand: • Contact details for all authors • Funding disclosure details (when applicable – see Sect 2.4) • Main manuscript files, including a separate title page (required) and separate tables and figures (if included) • Any supplemental files (optional) • Cover Letter (see Sect. 2.10 for when this is required) • Completed PRISMA checklist (for systematic reviews and meta-analyses) • Completed CONSORT checklist (for clinical trials) • Twitter handles for authors and a drafted tweet of no more than 280 characters (optional) • A data availability statement (optional, unless required by funder or institution) 4.1 File format The preferred format for your manuscript is Word. LaTeX files are also accepted. Word and (La)Tex templates are available on the Manuscript Submission Guidelines page of our Author Gateway. Please ensure your manuscript is in either Word or LaTeX otherwise it may be sent back to you. 4.2 Make your article discoverable When writing up your paper, think about how you can make it discoverable. The title, keywords and abstract are key to ensuring readers find your article through search engines such as Google. For information and guidance on how best to title your article, write your abstract and select your keywords, have a look at this page on the Gateway: How to Help Readers Find Your Article Online  4.3 Identifiable information CPCJ uses double-anonymized peer review, and thus authors are required to submit:  1. A version of the manuscript which has any information that compromises the anonymity of the author(s) removed. This version will be sent to the peer reviewers.  2. A separate title page which includes any potentially identifying material. This will not be sent to the peer reviewers.  See this page for detailed guidance on making an anonymous submission. 4.4 Use of “Patient-First” Language Please be sure you are using patient-first language in your entire manuscript (e.g., use "patients with CLP" instead of "CLP patients"; or "patients with 22q11.2 DS" instead of 22q11.2DS patients"). EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 241  4.5 Avoiding Priority Claims Manuscripts should avoid priority claims such as "this is the first study to...", "this is the largest study", etc. even when qualified by statements like "to our knowledge..." 4.6 Manuscript files to be uploaded These include: Title Page (required); Manuscript (required); Tables (optional); Figures (optional); Supplemental Materials (optional). 4.6.1 Title Page The Title Page (submitted separately from the manuscript) must include (in the following order): • Title (maximum 20 words); should be informative, relevant, and concise • Author names with no more than three highest attained degrees, in the order that they will appear in print • Institutional affiliation for each author. The affiliation listed should be the institution where the research was conducted. If an author has moved to a new institution since completing the research, the new affiliation can be included in a manuscript note at the end of the paper. • Name, address, telephone number, fax number, and email address of the corresponding author, who will receive all editorial communication and reprint requests • Declaration of conflicting interest statement.  Authors must disclose any relevant conflict of interest, including direct or indirect financial interests they may have in the materials or subject matter dealt with in the manuscript. If no conflict exists, please state that ‘The Author(s) declare(s) that there is no conflict of interest’. • Any Acknowledgements to be included in the manuscript (see details below) • If applicable, statement that manuscript was presented at a professional meeting, including the name, date, and location of the meeting • Running title (less than 8 words) Acknowledgments All contributors who do not meet the criteria for authorship should be listed in an Acknowledgements section. Examples of those who might be acknowledged include a person who provided purely technical help, or a department chair who provided only general support.  If professional writing assistance was provided (e.g., from a specialist communications company) this should be included in the Acknowledgements section. Authors must disclose any writing assistance – including the individual’s name, company and level of input – and identify the entity that paid for this assistance. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 242  When an individual who is not listed as an author submits a manuscript on behalf of the author(s), a statement must be included in the Acknowledgements section of the manuscript and in the accompanying cover letter. The statement must confirm that the listed authors have authorized the submission of their manuscript via third party and approved any statements or declarations, e.g., conflicting interests, funding, etc. Where appropriate, Sage reserves the right to deny consideration to manuscripts submitted by a third party rather than by the authors themselves. Do not include funding information in the Acknowledgements. Authors will be asked to disclose any sources of funding during submission. To ensure that the article is anonymized, please do not include author names or affiliations, or any other identifying information in any portion of the manuscript other than this Title Page. A formatted title page example can be found here for reference. 4.6.2 Manuscript Word counts and specific formatting requirements for different article types are further described in Section 1.2. A formatted manuscript example can be found here for reference. Page 1: Title The first page of the manuscript text file should include only the title used on the Title Page (above). Page 2: Abstract Original articles and Ideas and Innovations articles should include a structured abstract of no longer than 250 words with the following headings and information, as applicable. Structured Abstract: • Objective: State the main question or objective of the study and the major hypothesis tested, if any. • Design: Describe the design of the study indicating, as appropriate, use of randomization, anonymization, criterion standards for diagnostic tests, temporal direction (retrospective or prospective), etc. • Setting: Indicate the study setting, including the level of clinical care (for example, primary or tertiary; private practice or institutional). • Patients, Participants: State selection procedures, entry criteria, and numbers of participants entering and finishing the study. • Interventions: Describe the essential features of any intervention, including the methods and duration of administration. • Main Outcome Measure(s): The primary study outcome measures should be indicated as planned before data collection began. If the hypothesis being reported was formulated during or after data collection, this fact should be clearly stated. • Results: Describe measurements that are not evident from the nature of the main results and indicate any anonymization. If possible, the EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 243  results should be accompanied by confidence intervals (most often the 95% interval) and the exact level of statistical significance. For comparative studies, confidence intervals should relate to the differences between groups. Absolute values should be indicated when risk changes or effect sizes are given. • Conclusions: State only those conclusions of the study that are directly supported by data, along with their clinical application (avoiding overgeneralization) and/or whether additional study is required before the information should be used in clinical settings. Equal emphasis must be given to positive and negative findings of equal scientific merit. (Reproduced with permission from: Haynes RB et al. More informative abstracts revisited. Ann Intern Med. 1990;113:69–76). Data-based Brief Communications articles should include a structured abstract of no longer than 150 words with the following headings: Objective, Design, Setting, Patients/Participants, Interventions, Main Outcome Measure(s), Results, Conclusions. Non-data-based Brief Communications, Perspective articles, and Ethics/Health Policy reports should include an unstructured abstract of no longer than 100 words. Case/Clinical reports should include an unstructured abstract of no longer than 100 words, describing the objective, essential features and uniqueness of the case being presented, and conclusions. What I (We) Do articles should include a 50–75-word structured abstract with the following format: background (what is the issue/problem), solution, what I/we did that is new. Narrative reviews should include an unstructured abstract of no longer than 250 words. Letters to the Editor and Editorials do not require abstracts. A note about Key Words: Please do not include a list of Key Words in the manuscript. During manuscript submission, authors will be asked to select Key Words from a list of curated terms. The minimum number of Key Words required is three. Page 3: Body of Manuscript. Where applicable, divide the body of the manuscript into the Introduction, Methods, Results, Conclusion, References, and Figure Legends (if figures are included). Additional details on the References and Figure Legends are included below. If accepted, a Declaration of Conflicting Interests statement and a Funding Disclosure statement will be added to the manuscript during production. If any Acknowledgments were included on the title page, this text will also be added to the manuscript during production and will appear just before the references. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 244  The CPCJ follows guidelines published in the American Medical Association Manual of Style. • Manuscripts should be typed double-spaced with 1” margins, left justified, and use a standard 12-point font. • Pages should be numbered consecutively in the upper right-hand corner. • Do not print a running title. • Turn off the word processing program’s hyphenation feature and ‘‘smart quotes’’ feature before typing. • Headings must be used to designate the major divisions of the manuscript. Up to three levels of headings may be used. Statistics If a statistical analysis is conducted, explanation of the methods used must precede the Results section in the manuscript. Unusual or complex analysis methods should be referenced. Units of Measure/ Abbreviations The metric system is preferred for expressing units of measure. Abbreviations may be used for terms. The full term for each abbreviation should appear at its first use in the text, unless the abbreviation is a standard unit of measure. Abbreviations used in a table must be explained in a footnote below the table. For a list of standard abbreviations, consult the Council of Biology Editors Style Guide (available from the Council of Science Editors, 9650 Rockville Pike, Bethesda, MD 20814; http://www.councilscienceeditors.org) or other standard sources. The table below lists standard accepted abbreviations for typical cleft-type classifications and study groups. Other abbreviations may be proposed for classifications and groups not listed. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 245   Modifying terms that may added to the abbreviations above include: i (isolated) I (incomplete) U (unilateral) B (bilateral) SM (submucous) Phonetic Symbols Authors who use phonetic symbols are required to use Unicode-compliant fonts in their manuscripts. This will ensure the symbols display properly both during peer review and in the final published article. Examples of acceptable fonts include Charis SIL, Doulos SIL, and Gentium Unicode. Times New Roman is also acceptable, as it includes most IPA symbols and is Unicode compliant. Citations/References For citations and references, as of 2022 CPCJ uses the 11th Edition AMA Manual of Style. Note that in this style, in-text citations are represented by superscript numerals. Figure Legends A list of figure legends must be included on a separate page at the end of the manuscript article file. The legend should explain each figure as concisely as possible. Do not include figure legends in your figure art file. Figure legends are not included in the word count limit. 4.6.3 Tables EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 246  Tables should be numbered consecutively using Arabic numerals. Each table should have an appropriate title and explanation at its head. Abbreviations used in a table must be explained in a footnote below the table. Submit tables as separate files, with one table per file, in either .doc (text) or .xls (spreadsheet) format. 4.6.4 Figures All figures and illustrations must be original photographs or artwork. For figures or illustrations reprinted from published work, the author must obtain written permission from the copyright holder and disclose that upon submission. Submit figures as separate files. Illustrations, pictures and graphs should be supplied in the highest quality and in an electronic format that helps us to publish your article in the best way possible. Figures submitted at lower than the required resolutions stated above will be allowed for review purposes. However, the publication process for accepted manuscripts will be delayed until acceptable images have been submitted. Please follow the guidelines below to enable us to prepare your artwork for the printed issue as well as the online version. • Format: TIFF, JPEG: Common format for pictures (containing no text or graphs). EPS: Preferred format for graphs and line art (retains quality when enlarging/zooming in). • Placement: Figures/charts and tables should be submitted separately. Please add a placeholder note in the running text (i.e., “[insert Figure 1.]"). A single figure may include multiple images (a, b, c, etc.) but all must appear on the same page. Figures should be numbered consecutively in the order in which they appear in the manuscript, using Arabic numerals (e.g., Figure 1, Figure 2, etc).  Figure legends must be included on a separate page following the body of the manuscript. The legends should explain each figure in detail. • Resolution: Rasterized based files (i.e., with .tiff or .jpeg extension) require a resolution of at least 300 dpi (dots per inch). Line art should be supplied with a minimum resolution of 800 dpi. • File size limits: File sizes should be kept below 10MB where possible.  • Color: Please note that images supplied in color will be published in color online and black and white in print (unless otherwise arranged). Therefore, it is important that you supply images that are comprehensible in black and white as well (i.e., by using color with a distinctive pattern or dotted lines). The captions should reflect this by not using words indicating color. For specifically requested color reproduction in print, you will receive information regarding the costs from Sage after receipt of your accepted article. The first color image is $800, and it is $200 for any additional color images within the same contribution. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 247  • Dimension: Check that the artworks supplied matches or exceeds the dimensions of the journal. • Fonts: The lettering used in the artwork should not vary too much in size and type (usually sans serif font as a default). Image Integrity Figures should be minimally processed and should reflect the integrity of the original data in the image. Adjustments to images in brightness, contrast, or color balance should be applied equally to the entire image, provided they do not distort any data in the figure, including the background. Selective adjustments and touch-up tools used on portions of a figure are not appropriate. Images should not be layered or combined into a single image unless it is stated that the figure is a product of time-averaged data. All adjustments to image date should be clearly disclosed in the figure legend. Images may be additionally screened to confirm faithfulness to the original data. Authors should be able to supply raw image data upon request. Authors should also list tools and software used to collect image data and should document settings and manipulations in the Methods section. Visual Abstracts A graphical abstract is meant to be a clear, quick, and concise pictorial representation of research that has been published in the journal. It is meant to support the written abstract that accompanies all papers submitted for review to the journal. All figures published in the journal, including graphical abstracts, should be of the highest quality and should highlight paper findings. Please note visual abstracts are optional, but if you wish to submit a visual abstract with your paper, please follow the below guidelines: • The graphic should be labelled as “graphical abstract” or similar, so that it is clear the file is not an article figure file (e.g., it should not be labelled “Fig1”, “Fig2” etc.) • The aspect ratio for the graphic should be 16:9 (the recommended size ratio would be 600px X 338px) • The figure file type should be the same as for other article figures. Graphical abstracts, as with all figures in the journal, are only accepted in the following formats: JPG, TIF, or EPS. The journal does not accept Word or PowerPoint figure files. • A caption should be provided with the graphic. The caption should read: “This is a graphical representation of the abstract” • Do not use images subject to copyright clearance for graphical abstracts. If at all, graphical abstracts should feature aspects of the original figures created for the paper it is supporting. • The final visual abstract image should be sent with accepted article. • Simplicity is the key to conveying information visually. Terms and abbreviations should match overall journal usage and style. 4.6.5 Supplemental Material EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 248  This journal is able to host additional materials online (e.g., datasets, podcasts, videos, images, etc.) alongside the full text of the article. For more information, please refer to our guidelines on submitting supplementary files. Supplemental figures, tables, data files, and text These types of supplemental files should be named as Supplemental followed by the number in the sequence (e.g., Supplemental Figure 1; Supplemental Table 1) and referred to in the body of the manuscript text. Video Video clips that contribute significantly to the manuscript may be submitted in either avi, mov, or mpeg formats. Videos should be submitted at the desired reproduction size and length but should not exceed 10MB in size. If submitting avi files, the files must be compressed. Authors are solely responsible for all editing of video clips. As there are restrictions to the video file size, we recommend compressing the file and uploading it to the CPCJ Sage Track platform. The manuscript review system ScholarOne has a file size limit of 350mb for video files. If the video you wish to submit for review is larger than this, please follow these instructions on compressing the video file to fit within this limitation. Please note that if your submission is accepted, you will be asked to provide the full-size file for publication. This can be provided to production via DropBox or Google Drive. Each video file must be accompanied by a still image from the video that conforms to the figure resolution and size requirements outlined above for figures. This image will be published in the print version of the journal in place of the video. Please indicate in the figure legend that the still image has an associated video file. Both the print-version figure and the video must share the same file name (e.g., Figure1.jpg and Figure1.mov). A "List of Video Legends" should be prepared on a separate page at the end of the manuscript article file.  Video submissions are strongly encouraged, particularly for articles dealing with surgical techniques. For more information about the format requirements for videos, please review our Author Gateway. For detailed information pertaining to copyright and permissions requirements, view the Video Permission and Fair Use Quick Guide. For videos with identifiable subjects, subjects will need to sign the Audio- Visual Likeness Release Form. It is the author’s responsibility to submit signed release forms, if necessary, for each video. If patient(s) are identifiable in the video, authors must confirm a Patient Permission form has been completed and signed by each patient. If the author does not hold copyright to the video, the author must obtain permission for the video to be published in the journal. This permission must be for unrestricted use in all print, online, and licensed versions of the journal. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 249  Best-practice guidelines for preparing videos are be found at the following link: https://jamanetwork.com/journals/jamapediatrics/pages/instructions-for-authors. Audio Audio clips that contribute significantly to the manuscript may be submitted in .au, .ram, .wav, or .mp3 formats. Audio files should not exceed 6 MB in size. Authors are solely responsible for all editing of audio clips. Audio clips should be cited in the manuscript as Audio 1, Audio 2, etc. A "List of Audio Legends" should be submitted on a separate page at the end of the manuscript article file. 4.7 English language editing services Authors seeking assistance with English language editing, translation, or figure and manuscript formatting to fit the journal’s specifications should consider using Sage Language Services. Visit Sage Language Services on our Journal Author Gateway for further information.  4.8 ORCID As part of our commitment to ensuring an ethical, transparent and fair peer review process Sage is a supporting member of ORCID, the Open Researcher and Contributor ID. ORCID provides a unique and persistent digital identifier that distinguishes researchers from every other researcher, even those who share the same name, and, through integration in key research workflows such as manuscript and grant submission, supports automated linkages between researchers and their professional activities, ensuring that their work is recognized. The collection of ORCID IDs from corresponding authors is now part of the submission process of this journal. If you already have an ORCID ID you will be asked to associate that to your submission during the online submission process. We also strongly encourage all co-authors to link their ORCID ID to their accounts in our online peer review platforms. It takes seconds to do: click the link when prompted, sign into your ORCID account and our systems are automatically updated. Your ORCID ID will become part of your accepted publication’s metadata, making your work attributable to you and only you. Your ORCID ID is published with your article so that fellow researchers reading your work can link to your ORCID profile and from there link to your other publications. If you do not already have an ORCID ID please follow this link to create one or visit our ORCID homepage to learn more. 4.9 Permissions Please also ensure that you have obtained any necessary permission from copyright holders for reproducing any illustrations, tables, figures or lengthy quotations previously published elsewhere. Submission of a manuscript to the CPCJ is taken as evidence that no portion of the text or figures has been published or submitted for publication elsewhere unless information regarding previous publication is explicitly cited and written copyright permission obtained and uploaded at the time of manuscript submission. Permission should be obtained for both print and online publication. EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 250  For further information including guidance on fair dealing for criticism and review, please see the Copyright and Permissions page on the Sage Author Gateway. Back to top 5. On acceptance and publication 5.1 Sage Production Your Sage Production Editor will keep you informed as to your article’s progress throughout the production process. Proofs will be made available to the corresponding author via our editing portal Sage Edit or by email, and corrections should be made directly or notified to us promptly. Authors are reminded to check their proofs carefully to confirm that all author information, including names, affiliations, sequence and contact details are correct, and that Funding and Conflict of Interest statements, if any, are accurate.  5.2 Online First publication Online First allows final articles (completed and approved articles awaiting assignment to a future issue) to be published online prior to their inclusion in a journal issue, which significantly reduces the lead time between submission and publication. Visit the Sage Journals help page for more details, including how to cite Online First articles. 5.3 Access to your published article Sage provides authors with online access to their final article. 5.4 Promoting your article Publication is not the end of the process! You can help disseminate your paper and ensure it is as widely read and cited as possible. The Sage Author Gateway has numerous resources to help you promote your work. Visit the Promote Your Article page on the Gateway for tips and advice.  Back to top 6. Further information Any correspondence, queries or additional requests for information on the manuscript submission process should be sent to the The Cleft Palate Craniofacial Journal (CPCJ) editorial office as follows: Editor: Jamie Perry, PhD Editorial Office: The Cleft Palate Craniofacial Journal Email: perryja@ecu.edu If you have any questions about publishing with Sage, please visit the Sage Journal Solutions Portal Back to top 7. Appealing the publication decision EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 251  Editors have very broad discretion in determining whether an article is an appropriate fit for their journal. Many manuscripts are declined with a very general statement of the rejection decision. These decisions are not eligible for formal appeal unless the author believes the decision to reject the manuscript was based on an error in the review of the article, in which case the author may appeal the decision by providing the Editor with a detailed written description of the error they believe occurred. If an author believes the decision regarding their manuscript was affected by a publication ethics breach, the author may contact the publisher with a detailed written description of their concern, and information supporting the concern, at publication_ethics@sagepub.com                 EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 252  Appendix 10: UEA FHM S-REC Approval                                             EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 253  Appendix 11: Health Research Authority (HRA) Approval    EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 254               EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 255             EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 256   Appendix 12:  Interview topic guide                           EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 257  Appendix 13: Recruitment Email                                       EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 258  Appendix 14. Participant Information Sheet                 EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 259  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 260  Appendix 15: Example Coding framework   Theme Definition       Sub theme Definition Example quotes 1. Navigating the decision-making process  Factors that may facilitate or pose a barrier to collaboration and shared decision-making when discussing orthognathic surgery.   Finding a balance How clinicians maintain a balance between promoting patient autonomy and beneficence. Finding a position of ‘compromise’ in shared decision-making. ‘I'm constantly challenged, because of the nature of our work. It’s a constant challenge to try not to be to be paternalistic about things, but then there are sometimes when you just have to say no and so finding the right balance’ (P07)      External factors impacting on the decision-making process   Considering the role of social media and online communities on the decision-making process.  ‘Standard concerns about things being unmoderated, advice that we wouldn't necessarily recommend is being shared quite readily without anybody there to say, Oh no, no, don't do that.’(P08)      Managing positions of power  Clinician awareness of power dynamics in the shared decision-making environment. Including positioning of the dental chair and number of professionals in one room. ‘So even just the sort of power imbalance of that…of standing and him sitting.’(P09)  ‘and a dental chair which is behind the kind of half high wall so the patients don't walk on and see a dental chair, they come in and they seated area and we sit them down and we… we make sure it's that sort of...subtle things, but we make sure that we're always at eye level with them, so that the seats that the patient sit on are slightly higher than ours. So that when we are looking, we're on an equal level and we space it to make it sort of as informal as possible’.(P03).   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 261        The process of eliciting motivations for surgery   Understanding what is important to the young person, and their motivations for surgery. Gender differences, and own position and influence in the SDM process is discussed.  ‘under all that, there are reasons why people probably would like to have the benefits of having jaw surgery. But I think it's really important to kind of pick that out. You always want somebody…I mean, that's just how it was trained. You always wanted to get it out of the patient. Why they.. why they want surgery.’ (P05).  ‘girls are often a lot better than the boys, much better... Yeah, it's a bit of a generalisation, anecdotal observation, but they tend to be a bit more... yeah, I'd like my nose doing. I know I want my nose doing, I want my lip doing, but I've been told my top jaw is in the wrong position, so let's investigate that. But ultimately, I want my nose doing... Yeah? whereas the boys will come in... they're a bit like, um yeah, I'm okay, or... there’s nothing you can do, sort of thing, so their starting point is quite different.’ (P02)  ‘I'm really cognizant of not creating…that awareness that, oh, maybe I look different. Is there something wrong with me? So I can distinctly remember seeing a young girl, you know… in…and she had no issues with how she looked. She had brilliant confidence, et cetera, and I'm very cognizant that I don't want to EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 262  create something in her mind.’ (P05)  2. ‘Team-centric’   How different professionals view their role and the role of others in the team, reflecting on opportunities for liaison and discussion with other MDT colleagues.  Sub theme Definition Example quotes       Opportunities to foster team communication  Opportunities (or desire) to liaise and have discussions with other colleagues in the MDT.  'the key to a strong and functional team is that you do have the opportunities just to have corridor conversations and that you do bump into your colleagues.’ (P06)  ‘So there isn't really an opportunity to chat. So yeah, we probably need more time in between them occasionally.’ (P09)        Valued contribution of MDT members How clinicians view and seek input from other colleagues in the MDT  ‘I think we have quite an important role to play in, in, in different ways. So I think I think we have an important role to play clinically, in terms of our specialism and in terms of advising.’ (P01).  ‘I'd very much hate to work in a team where, for example, the surgeon led everything and was, you know, was seen as the clinical lead when everybody's a clinical lead because everybody's part to the service and to the input to the care is important.’ (P06) 3. Health inequalities impacting on access to cleft care Clinicians consider financial, employment, education and childcare Equity and barriers to accessing care Factors that preclude, or pose a barrier to patients ‘I don’t see the same mixture of backgrounds in our cleft orthognathic than I would expect EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 263     issues that may preclude patients attending clinic. Consideration is also given to resources and professionals in attendance at each clinic. attending appointments for their cl/p.  from kind of. It’s in the general population now. That may be because there are so many other factors that preclude them actually turning up to clinic. You know, you think of all the hurdles that we put in place. They’ve got to be able to attend appointments, they’ve got to be able to have… they’ve got to be able to see a dentist on a regular basis to have good oral health. They’ve got to be able to engage with the communication from the hospital from the admin team, inviting them to appointments, and I would say all those things…exclude quite a significant proportion of people that we look after.’ (P03). EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 264  Appendix 16. Participant Consent Form  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 265  Appendix 17: Example coding of transcript    Reflective journal entry  Clinicians are seeking a level of certainty in an environment whereby there is lot’s of uncertainty to navigate, which is extremely difficult. As someone who takes an active role in EDI work, I was reassured to hear that clinicians are considering barriers to accessing healthcare, however at the same time I was also surprised to hear strong narratives about the health inequalities faced by different services, and the reported barriers for patients In accessing c    EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 266  Appendix 18: Example theme development   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 267          EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 268         EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 269                               EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 270  Appendix 19: Visual representation of searching for themes and subthemes         EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 271                                   EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 272  Appendix 20: Worked example of reviewing and defining themes    Main Theme    Sub Themes    Theme 1: Impact of the MDT Environment   • Challenges associated with the MDT coming together with the patient in one room  • Advantages of meeting as an MDT  • Creating psychological safety in the MDT environment   Theme 2: ‘Digging deep’ around the unvoiced    • Clinician skill in exploring patient concerns  • Perceived unacceptability of asking for surgery for cosmetic/aesthetic reasons   • Gender differences  • The role of Psychology in the Cleft MDT   • Responsibility for mental health    Theme 3: Influence of systems on decision-making  • Choice of words and language used during SDM  • Acknowledgement and influence of paternalism  • Influence of support networks • Consistency in the  level of detailed information provided to patients  Theme 4: Awareness of Health Inequalities and barriers to accessing cleft care.  • Factors that exclude • Financial and travel implications • Equity across services.   Theme 5: The rise of social media and online platforms    • Magnifying the difference  • Influence of patient/peer support groups and communities   • Signposting     Theme 6: Internal conflict experienced by professionals    • Autonomy vs beneficence  • ‘Doing the right thing’    Theme 7: Considering culture and religion with SDM.    • ‘Doctor knows best’  • Religious orientation and associated ethical dilemmas   Theme 8: Acknowledging the gravity of the decision being made  • Commitment to the treatment pathway  EXPLORING DECISION-MAKING IN PAEDIATRIC SURGERY 273    • Delegating responsibility at the transition period    Table of themes draft 2 Themes and subthemes   Theme    Subthemes  Theme 1.: Activation of the ‘threat’ system • ‘‘Doing the right thing’  • Rise of social media  • Awareness of power dynamics  • “unvoiced” layers of concern     Theme 2: ‘Team-centric” – Implementation of the 20 year pathway. • Opportunities for liaison  • Equity and health inequalities  • Perception of professional roles    Final themes Themes and subthemes   Theme    Subthemes Theme 1: Navigating the decision-making process • Finding a ‘balance’   • External factors impacting on the decision-making process • Managing positions of power • The process of eliciting motivations for surgery  Theme 2: ‘Team-centric”  • Opportunities to foster team communication  • Valued contribution of MDT members Theme 3: Health Inequalities impacting on access to cleft care. • Equity and barriers to accessing care

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