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Despite an increase in research regarding the healthcare outcomes and experiences of diverse groups, some significant gaps in the literature remain. Among the most understudied and underserved groups are those with intersectional identities. Although researchers have made significant efforts to increase research regarding health care experiences of people of color, older adults, and rural populations, less is known about the health care experiences of older rural African Americans. Due to the lack of research focusing on the unique experiences of this intersectional group, qualitative research was an important first step towards broadening this research base. This study utilized a cultural safety perspective of older rural African Americans to provide insight into several factors that influence their healthcare experiences. Prior to this study, no qualitative research utilizing the cultural safety framework has been conducted to examine the unique challenges that older rural African Americans face within the United States healthcare system or how their experiences may impact later treatment-seeking behavior and treatment adherence. To address this gap in the literature, this study examined the lived experiences of a sample of 47 African American participants, aged 55 and older, living in rural Mississippi. Participants completed semi-structured interviews regarding their health care experiences and attitudes. Thematic analysis was used to identify common themes. Some of the most prevalent themes were related to the importance of good communication, the importance of positive experiences in creating trust, and patients advocating for their own health. Specific implications and future research directions are discussed

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Mississippi State University Scholars Junction Theses and Dissertations Theses and Dissertations 5-10-2024 Improving cultural safety: A thematic analysis of older rural African Americans’ experiences with the U.S. healthcare system Sarah Marie Israel Mississippi State University, sarah.israel@va.gov Follow this and additional works at: https://scholarsjunction.msstate.edu/td Recommended Citation Israel, Sarah Marie, "Improving cultural safety: A thematic analysis of older rural African Americans’ experiences with the U.S. healthcare system" (2024). Theses and Dissertations. 6126. https://scholarsjunction.msstate.edu/td/6126 This Dissertation - Open Access is brought to you for free and open access by the Theses and Dissertations at Scholars Junction. It has been accepted for inclusion in Theses and Dissertations by an authorized administrator of Scholars Junction. For more information, please contact scholcomm@msstate.libanswers.com. Template APA v4.1 (beta): Created by L. Threet 11/15/2019  Improving cultural safety: A thematic analysis of older rural African Americans’ experiences with the U.S. healthcare system By TITLE PAGE Sarah Marie Israel Approved by: Carolyn E. Adams-Price (Major Professor) Danielle K. Nadorff Cliff McKinney Antonio Gardner Kevin J. Armstrong (Graduate Coordinator) Rick Travis (Dean, College of Arts & Sciences) A Dissertation Submitted to the Faculty of Mississippi State University in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in Applied Psychology (Clinical Psychology concentration) in the Department of Psychology. Mississippi State, Mississippi May 2024   Copyright by COPYRIGHT PAGE Sarah Marie Israel 2024   Name: Sarah Marie Israel ABSTRACT Date of Degree: May 10, 2024 Institution: Mississippi State University Major Field: Applied Psychology (Clinical Psychology concentration) Major Professor: Carolyn Adams-Price Title of Study: Improving cultural safety: A thematic analysis of older rural African Americans’ experiences with the U.S. healthcare system Pages in Study 363 Candidate for Degree of Doctor of Philosophy Despite an increase in research regarding the healthcare outcomes and experiences of diverse groups, some significant gaps in the literature remain. Among the most understudied and underserved groups are those with intersectional identities. Although researchers have made significant efforts to increase research regarding health care experiences of people of color, older adults, and rural populations, less is known about the health care experiences of older rural African Americans. Due to the lack of research focusing on the unique experiences of this intersectional group, qualitative research was an important first step towards broadening this research base. This study utilized a cultural safety perspective of older rural African Americans to provide insight into several factors that influence their healthcare experiences. Prior to this study, no qualitative research utilizing the cultural safety framework has been conducted to examine the unique challenges that older rural African Americans face within the United States healthcare system or how their experiences may impact later treatment-seeking behavior and treatment adherence. To address this gap in the literature, this study examined the lived experiences of a sample of 47 African American participants, aged 55 and older, living in rural Mississippi. Participants completed semi-structured interviews regarding their health care   experiences and attitudes. Thematic analysis was used to identify common themes. Some of the most prevalent themes were related to the importance of good communication, the importance of positive experiences in creating trust, and patients advocating for their own health. Specific implications and future research directions are discussed.    ii ACKNOWLEDGEMENTS I would like to express my deepest gratitude to my mentor and chair of my committee, Dr. Carolyn Adams-Price, for her invaluable feedback and support. I also could not have made it through this process without my defense committee, Dr. Danielle Nadorff, Dr. Cliff McKinney, and Dr. Antonio Gardner, who provided their knowledge and expertise and were incredibly patient and encouraging. I am also exceedingly grateful to my four research assistants, Tasha Hood, MaKailee Silliaman, Taelyr Harris, and Jennilynn Hall, for their passion, interest, and contributions to this project. Mentoring these four young women was one of the greatest honors of my entire doctoral experience, and I could not be prouder of their growth. I would also like to extend my sincere thanks to my classmates and cohort members for their feedback and moral support. Special thanks go to Rachel Scott and my lab mate, Darby Mackenstadt, for volunteering to help with providing secondary coding for transcripts. I also want to thank my mother for her endless love and support. Her belief in me helped me keep going even when things got tough, and she was always ready with coffee, walks, and hugs as needed. Lastly, I am grateful for my dog who has been a wonderful source of much needed laughter and levity.  iii TABLE OF CONTENTS ACKNOWLEDGEMENTS ............................................................................................................ ii LIST OF TABLES ......................................................................................................................... xi LIST OF FIGURES ...................................................................................................................... xii CHAPTER I. INTRODUCTION ............................................................................................................1 Background of Study .........................................................................................................1 Race  ...............................................................................................................................4 Key Concepts and Language Use ................................................................................4 Race as a Social Construct ....................................................................................4 Racism and Racial Discrimination ........................................................................5 Black Groups in the United States .........................................................................8 Language Use in this Paper .................................................................................10 Historical Context of African Americans in the Southern United States ..................10 Medical Wrongdoings and Mistrust ..........................................................................12 Health and Healthcare Disparities .............................................................................14 Communication Challenges .......................................................................................18 Health Literacy ....................................................................................................18 Patient-Provider Relationship Dynamics and Communication ...........................21 Age  .............................................................................................................................25 Key Concepts and Definitions ...................................................................................25 Defining Old Age ................................................................................................25 Ageism .................................................................................................................26 Health and Healthcare Disparities .............................................................................27 Communication Challenges .......................................................................................28 The Intersection of Race and Age .............................................................................28 Rural Settings ..................................................................................................................29 Defining Rural ...........................................................................................................29 Specific Considerations Related to Health in Rural Areas ........................................30 Income, Employment, and Poverty .....................................................................30 Access to Healthy and Affordable Food .............................................................31 Access to Healthcare Services .............................................................................31 Rural Health Disparities ............................................................................................32 Historical Context of Rural Communities in the United States ................................33  iv Communication Challenges .......................................................................................34 Health Literacy ....................................................................................................34 Trust in Information Provided .............................................................................34 The Intersection of Race and Rural ...........................................................................35 Conceptual Framework: Cultural Safety .........................................................................36 Key Terms .................................................................................................................36 What is the Cultural Safety Framework? ..................................................................38 Cultural Competency vs Cultural Safety ...................................................................38 Application ................................................................................................................42 The Current Study ...........................................................................................................42 Goals of the Study .....................................................................................................42 Rationale for Qualitative Design ...............................................................................43 Rationale for Thematic Approach .............................................................................43 Research Questions ...................................................................................................46 Hypotheses ................................................................................................................47 II. RESEARCH METHOD..................................................................................................52 Participants ......................................................................................................................52 A Priori Sample Size .................................................................................................52 Inclusion Criteria .......................................................................................................56 Exclusion Criteria ......................................................................................................57 Recruitment Method and Considerations ..................................................................59 Data Collection ................................................................................................................62 Interviewer Training ..................................................................................................62 Informed Consent ......................................................................................................63 Participant Compensation ..........................................................................................65 COVID-19 Safety Guidelines ....................................................................................66 Semi-Structured Interviews .......................................................................................66 Demographic Information ...................................................................................67 Regional Information ...........................................................................................67 General Health Information. ................................................................................68 Qualitative Questions and Prompts. ....................................................................71 Positive vs Negative Experiences with Health Care Providers. ....................72 Discrimination by Health Care Providers. .....................................................73 Trust and Mistrust of the Healthcare System and Health Care Providers. ....74 Health Literacy and Other Communication Barriers. ....................................74 Addressing Other Barriers to Treatment. ......................................................75 Addressing the Potential Impact of COVID-19. ...........................................76 Quantitative Measure of Health Literacy ............................................................76 Interviewer Race Effects and Code-Switching ..........................................................76 Thematic Analysis ...........................................................................................................77 Phase 1: Get Familiar with the Data ..........................................................................78 Prolonged Engagement with the Data .................................................................78 Document Theoretical and Reflective Thoughts .................................................79 Document Thoughts About Potential Codes and Themes ...................................79  v Store Raw Data in Well-Organized Archives .....................................................80 Keep Records of All Research Notes, Transcripts, and Reflexive Journals .......80 Phase 2: Generate Initial Codes .................................................................................80 Peer Debriefing ....................................................................................................80 Researcher Triangulation .....................................................................................81 Reflexive Journaling ............................................................................................81 Using a Coding Framework .................................................................................82 Audit Trail of Code Generation ...........................................................................82 Documentation of all Team Meeting and Peer Debriefings. ...............................82 Phase 3: Search for Themes ......................................................................................83 Researcher Triangulation .....................................................................................83 Diagraming Proposed Theme Connections .........................................................83 Keep Detailed Notes ............................................................................................83 Phase 4: Reviewing Themes ......................................................................................84 Researcher Triangulation .....................................................................................84 Theme and Subtheme Vetting. ............................................................................84 Test for Referential Adequacy. ............................................................................84 Phase 5: Defining and Naming Themes ....................................................................85 Researcher Triangulation .....................................................................................85 Peer Debriefing ....................................................................................................85 Coming to a Consensus .......................................................................................85 Documentation of Team Meetings and Theme Naming .....................................86 Phase 6: Producing the Report ..................................................................................86 Peer Debriefing ....................................................................................................86 Thick Descriptions of Context .............................................................................86 Description of the Audit Trail .............................................................................87 Report Reasons for Theoretical, Methodological, and Analytical Choices ........87 III. RESULTS .......................................................................................................................88 Generating Themes ..........................................................................................................88 Positive vs Negative Healthcare Experiences .................................................................89 Positive Experiences ..................................................................................................90 Pleasant ................................................................................................................91 Good Communication Skills ...............................................................................91 Good Clinical Skills ............................................................................................92 Readily Accessible ..............................................................................................92 Negative Experiences ................................................................................................93 Unpleasant ...........................................................................................................94 Poor Clinical Skills ..............................................................................................94 Poor Communication Skills .................................................................................95 Delayed Treatment ..............................................................................................95 Adding Nuance: Behavior Over Costs ................................................................96 Discrimination .................................................................................................................96 Types of Discrimination Experienced .......................................................................97 Racism .................................................................................................................98  vi Sexism .................................................................................................................99 Ageism .................................................................................................................99 Fatphobia ...........................................................................................................100 Acknowledged but Not Personally Experienced ...............................................100 Adding Nuance: Uncertainty About Discrimination .........................................100 Impact of Discrimination on Treatment Seeking ....................................................101 Impact on Treatment Adherence .............................................................................101 Trust vs Mistrust ............................................................................................................102 The Healthcare System ............................................................................................103 Trust in the Healthcare System ..........................................................................103 Trust Based on Positive Experiences with Primary Care Providers. ...........103 Belief in Own Ability to Navigate It. ..........................................................105 Mistrust in the Healthcare System .....................................................................105 Financial Reasons. .......................................................................................106 Due to Negative Experiences. .....................................................................107 Lack of Trust Because Information is Mixed. .............................................107 Primary Care Providers ...........................................................................................107 Based on Positive Experiences ..........................................................................108 Good Communication and Follow-Up ..............................................................109 Have to Trust .....................................................................................................109 Impact of Mistrust on Treatment Seeking ...............................................................110 Related to Provider ............................................................................................110 Previous Treatment was Unsuccessful ..............................................................111 Mistrust Related to a Specific Procedure ..........................................................112 Impact of Mistrust on Treatment Adherence ...........................................................112 Communication Challenges and Solutions ....................................................................113 Communication Barriers .........................................................................................114 Patient Health Literacy ......................................................................................115 Poor Communication by Provider .....................................................................116 Patient-Provider Relationship ............................................................................116 Situational Factors .............................................................................................117 Adding Nuance: Where Participants Get Their Information .............................117 Addressing Communication Barriers ......................................................................118 Understand Own Health and Make Informed Decisions ...................................118 Wants Their Health Care Provider to Know .....................................................120 Expression of Bodily Autonomy. ......................................................................120 Comfort Based on Relationship .........................................................................121 Part of Identity ...................................................................................................121 Recommendations for Providers from the Patient Perspective ...............................122 Be Thorough and Clear .....................................................................................122 Value Patient Perspective ..................................................................................123 Outside of Appointments ...................................................................................124 The Human Element ..........................................................................................124 Addressing Health Concerns and Treatment Barriers ...................................................125 Addressing Emerging Health Concerns ..................................................................126  vii Gather Information ............................................................................................126 Attempt to Treat on Own First ..........................................................................127 Seek Medical Attention .....................................................................................128 Adding Nuance: Progression Through the Steps ...............................................128 Addressing Treatment Barriers ................................................................................129 Prayer and Faith as Standalone Theme .........................................................................129 Impact of COVID-19 .....................................................................................................130 Quantitative Measure of Health Literacy ......................................................................131 IV. DISCUSSION ...............................................................................................................132 Summary and Interpretations ........................................................................................132 Implications ...................................................................................................................140 Limitations .....................................................................................................................146 Study Design ...........................................................................................................146 Generalizability .......................................................................................................149 Future Research .............................................................................................................151 REFERENCES ............................................................................................................................154 APPENDIX A. QUESTIONNAIRE QUESTIONS ...............................................................................201 Demographic Information Questions ............................................................................202 Regional / Logistic Information Questions ...................................................................205 Health Information Questions .......................................................................................206 Qualitative Interview Questions ....................................................................................208 Rapid Estimate of Adult Literacy in Medicine—Short Form (REALM-SF) ................211 B. REFLEXIVE JOURNAL ENTRIES ............................................................................214 C. AUDIT TRAIL .............................................................................................................279 Data Familiarization and Code Formulation .................................................................280 Important Note .........................................................................................................280 Participant Interviews and Research Meetings ........................................................280 Interview 5/31/22 – Participant Home ..............................................................280 Interview 6/2/22 – Research Lab .......................................................................280 Lab Meeting 6/10/22 .........................................................................................281 Rural Community Center Interview Day #1 – 6/14/22 .....................................281 Interview 6/15/22 – Participant Home ..............................................................282 Rural Community Center Interview Day #2 – 6/16/22 .....................................282 Rural Community Center Interview Day #3 – 6/21/22 .....................................283 Interview 6/22/22 – Participant Homes (x2) and Phone Interview (x1) ...........283 Interview 6/24/22 – Phone Interview ................................................................283 Research Meetings with Dissertation Chair ......................................................284  viii Brief Pause in All Research Meetings ...............................................................284 Email Coordination – October 2022 ..................................................................284 Research Meeting with New Research Assistant – 10/27/22 ............................285 Research Meeting with (now) Post-Baccalaureate Research Assistants – 10/30/22 .................................................................................................285 Research Meeting with Undergraduate Research Assistant – 11/3/22 ..............285 Research Meeting with Undergraduate Research Assistant – 11/10/22 ............286 Research Meeting with Post-Baccalaureate Research Assistants – 1/15/23 .....286 Research Meeting with Post-Baccalaureate Research Assistants – 2/13/23 .....286 Research Meeting with Undergraduate Research Assistant – 5/30/23 ..............287 Research Meeting with Post-Baccalaureate Research Assistant – 6/3/23 .........287 Research Meeting with Post-Baccalaureate Research Assistant – 6/4/23 .........288 Research Meeting with Undergraduate Research Assistant – 6/8/23 ................289 Research Meeting with Dissertation Chair – 6/11/23 ........................................289 Research Meeting with Undergraduate Research Assistant – 6/13/23 ..............289 Research Meeting with Undergraduate Research Assistant – 6/19/23 ..............289 Research Meeting with Undergraduate Research Assistant – 6/26/23 ..............290 Research Meeting with Undergraduate Research Assistant – 6/27/23 ..............290 Research Meeting with Graduate Researchers – 7/1/23 ....................................290 Initial Codes by Coder .............................................................................................291 Coder 1 (PI) .......................................................................................................291 Coder 2 (Undergraduate Research Assistant) ....................................................293 Coder 3 (Post-Baccalaureate Research Assistant) .............................................295 Coder 4 (Graduate Researcher) .........................................................................295 Coder 5 (Graduate Researcher) .........................................................................298 Final Coding Process ...............................................................................................299 Qualitative Question 1 .......................................................................................300 Qualitative Question 2 .......................................................................................301 Qualitative Question 3 .......................................................................................302 Qualitative Question 4 .......................................................................................302 Qualitative Question 5 .......................................................................................303 Qualitative Question 6 .......................................................................................303 Qualitative Question 7 .......................................................................................305 Qualitative Question 8 .......................................................................................306 Qualitative Question 9 .......................................................................................306 Qualitative Question 10 .....................................................................................307 Qualitative Question 11 .....................................................................................307 Qualitative Question 12 .....................................................................................308 Qualitative Question 13 .....................................................................................308 Qualitative Question 14 .....................................................................................309 Qualitative Question 15 .....................................................................................310 Qualitative Question 16 .....................................................................................311 Qualitative Question 17 .....................................................................................311 Qualitative Question 18 .....................................................................................312 Research Meeting with Dissertation Chair – 7/9/23 ..........................................313  ix Theme Generation .........................................................................................................313 Search for Themes ...................................................................................................313 Research Meeting 7/20/23 .................................................................................313 Theme Diagraming ..................................................................................................318 Reviewing, Naming, and Defining Themes ..................................................................336 Positive vs Negative Healthcare Experiences .........................................................336 RQ1.1: How do older rural African Americans characterize a positive experience with health care providers? (QQ1) .........................................................336 Pleasant. The provider creates positive affect in their patients through their own positive affect and through providing “good service” involving respect and care for patients. ..............................................................................337 Readily Accessible. This includes patients being able to be seen relatively quickly and providers making themselves readily accessible by phone calls (both initiated by the patient and by the provider). .......................337 Good Communication Skills. The health care provider in question communicates well with patients. ..........................................................337 Good Clinical Skills. The health care provider in question is good at what would be considered core clinical skills of their profession. ............................337 RQ1.2: How do older rural African Americans characterize a negative experience with health care providers? (QQ2) .........................................................338 Delayed Treatment. .....................................................................................339 Poor Communication Skills. ........................................................................339 Poor Clinical Skills. .....................................................................................339 Unpleasant. ..................................................................................................339 Discrimination .........................................................................................................339 RQ2.1: How do older rural African Americans experience discrimination? (QQ3) ...............................................................................................................339 RQ2.2: Do experiences with discrimination influence whether they seek medical treatment? (QQ4) ...................................................................................340 RQ2.3: Do experiences with discrimination influence whether they adhere to medical recommendations? (QQ5) ........................................................340 Trust vs Mistrust ......................................................................................................340 RQ3.1: Do older rural African Americans trust the healthcare system? (QQ6) ..340 Belief That the System is Good. ..................................................................341 Belief in Own Ability to Navigate It. ..........................................................342 Trust Based on Positive Experiences with Providers. .................................342 Due to Negative Experiences. .....................................................................343 Lack of Trust Because Information is Mixed. .............................................343 Financial Reasons. .......................................................................................343 RQ3.2: Do older rural African Americans trust their primary care providers? (QQ7) .....................................................................................................344 Based on Positive Experiences. ...................................................................345 Good Communication and Follow-up. ........................................................345 “Have to” Trust. ...........................................................................................345  x RQ3.3: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they pursue treatment? (QQ8) ..................................345 Related to Provider. .....................................................................................346 Previous Treatment was Unsuccessful. .......................................................346 Related to a Specific Procedure. ..................................................................346 RQ3.4: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they adhere to medical recommendations? (QQ9) ...347 Communication Challenges and Solutions ..............................................................348 RQ4.1: What communication barriers do older rural African Americans experience when interacting with health care providers? (QQ10, QQ11, & QQ13 as well as responses in the negative to QQ12 & QQ14) .................348 Theme for Discomfort with Addressing Communication Problems with Providers. .........................................................................................351 Patient Health Literacy. ...............................................................................352 Poor Communication by Provider. ..............................................................353 Patient-Provider Relationship. .....................................................................353 Situational Factors. ......................................................................................353 RQ4.2: Do older rural African Americans feel comfortable addressing communication problems with their health care providers? Why or why not? (QQ12 & QQ14) ...............................................................................354 Comfort Based on Relationship. ..................................................................356 Wants Their Health Care Provider to Know. ..............................................356 Expression of Bodily Autonomy. ................................................................356 Understand Own Health and Make Informed Decisions. ............................356 Part of Identity. ............................................................................................356 RQ4.3: What can health care providers do to improve how they communicate with older rural African Americans? (QQ15) .........................................357 Be Thorough and Clear. ..............................................................................358 Value Patient Perspective. ...........................................................................358 The Human Element. ...................................................................................358 Outside of Appointments. ............................................................................358 Addressing Health Concerns and Treatment Barriers .............................................358 RQ5.1: What do older rural African Americans do to manage emerging health issues? (QQ16) ........................................................................................358 Gather Information. .....................................................................................359 Attempt to Treat on Own First. ...................................................................359 Seek Medical Attention. ..............................................................................359 Additional Finding. ......................................................................................360 Prayer / Faith as Standalone Theme ........................................................................361 D. HUMAN SUBJECTS INSTITUTIONAL REVIEW BOARD APPROVAL ..............362 xi LIST OF TABLES Table 1 Participant Demographic Characteristics .....................................................................58 Table 2 Participant Regional and Logistic Information ............................................................69 Table 3 Participant Health Characteristics ................................................................................70 Table C1 Themes for Positive Experiences with Health Care Providers ..................................336 Table C2 Themes for Negative Experiences with Health Care Providers .................................338 Table C3 Themes for Discrimination Experienced ...................................................................339 Table C4 Themes for Reasons to Trust the Healthcare System ................................................341 Table C5 Themes for Reasons Not to Trust the Healthcare System .........................................342 Table C6 Themes for Reasons to Trust Primary Care Providers...............................................344 Table C7 Themes for Impact of Trust or Mistrust .....................................................................346 Table C8 Themes for Unclear Communication .........................................................................349 Table C9 Themes for Reasons Why Participants Disagreed with Their Provider ....................350 Table C10 Final Themes for Communication Barriers ...............................................................352 Table C11 Themes for Reasons Why Participants Felt Comfortable Addressing Communication Problems ..............................................................................355 Table C12 Themes for Qualities of Good Communication .........................................................357 Table C13 Themes for Methods of Managing Emerging Health Issues .....................................359   xii LIST OF FIGURES Figure 1 Final Themes for Positive Experiences........................................................................90 Figure 2 Final Themes for Negative Experiences ......................................................................93 Figure 3 Final Themes for Forms of Discrimination .................................................................98 Figure 4 Final Themes for Reasons to Trust the Healthcare System .......................................104 Figure 5 Final Themes for Reasons to Not Trust the Healthcare System ................................106 Figure 6 Final Themes for Reasons for Trust in Primary Health Care Provider ......................108 Figure 7 Final Themes for the Impact of Mistrust on Treatment Seeking ...............................111 Figure 8 Final Themes for Communication Barriers ...............................................................115 Figure 9 Final Themes for Reasons Participants Felt Comfortable Addressing Communication Barriers ................................................................................119 Figure 10 Final Themes for Qualities of Good Communication................................................123 Figure 11 Final Themes for Methods of Managing Emerging Health Issues ............................126 Figure C1 Initial Themes for Positive Healthcare Experiences ..................................................318 Figure C2 Simplification of Themes for Positive Healthcare Experiences ................................319 Figure C3 More Efficient Representation of Themes for Positive Healthcare Experiences ......320 Figure C4 Initial Themes for Negative Healthcare Experiences ................................................321 Figure C5 Simplification of Themes for Negative Healthcare Experiences ...............................321 Figure C6 New Proposed Themes for Negative Healthcare Experiences ..................................322 Figure C7 Initial Themes for Types of Discrimination ...............................................................323 Figure C8 Initial Themes for the Impact of Discrimination .......................................................324 Figure C9 Initial Themes for Mistrust in the Healthcare System ...............................................325  xiii Figure C10 Initial Themes for Mistrust in the Healthcare System ...................................326 Figure C11 Initial Diagram of Trust vs Mistrust ..............................................................326 Figure C12 Initial Theme Diagram for Communication Barriers.....................................327 Figure C13 Multifaceted Representation of Communication Barriers .............................329 Figure C14. Themes for Recommended Methods of Improving Communication ............330 Figure C15 Simplification of Themes for Recommended Methods of Improving Communication ..............................................................................................331 Figure C16 More Efficient Representation of Themes for Positive Healthcare Experiences ....................................................................................................332 Figure C17 Initial Themes for Methods of Addressing Health Issues ..............................333 Figure C18 Themes for Access Barriers to Health ...........................................................334   1 CHAPTER I INTRODUCTION Background of Study Older rural African Americans are an understudied and underserved population. Despite the rising interest in studying healthcare disparities experienced by certain groups, significant gaps in the literature remain unaddressed (Wasserman et al., 2019). For example, there are few populations more underrepresented in health disparity research than rural African American adults (Caldwell et al., 2016). While significant progress has been made in increasing the amount of research with people of color (POC) in the United States, many of these studies utilize convenience samples from urban settings (Bornstein et al., 2013). In addition, while many healthcare studies focus on older adult samples, they tend to use urban White individuals as their reference group (e.g., Larson & Correa-de-Araujo, 2006; K. Mueller et al., 1999). To some degree, this bias in the literature is to be expected, as African Americans make up only 7.8% of the total rural American population and 13.1% of the total urban American population (Cromartie, 2018). The focus on older adults in health literature follows a similar logic, given that older adults are one of the fastest-growing populations worldwide (Iriondo & Jordan, 2019) and that they experience significantly more health-related concerns than younger cohorts (Jaul & Barron, 2017).  Despite this encouraging increase in this body of literature, other populations remain understudied (Corrington et al., 2020). In their call to practitioners and researchers, Corrington  2 and colleagues (2020) provide recommendations for how to support and be inclusive of seven main understudied and stigmatized groups. According to Corrington et al. (2020), the seven groups include: (1) religious minorities and individuals who do not identify with a specific religious affiliation; (2) transgender and gender nonconforming individuals; (3) individuals with differing political ideologies; (4) undocumented immigrants; (5) individuals of lower socioeconomic status; (6) individuals ages 65 or older; and (7) individuals with intersectional identities. To understand the importance of this seventh category, one must understand the concept of intersectionality.  As multiple scholars have pointed out (e.g., Bowleg, 2012; Brah & Phoenix, 2004), the concept of intersectionality is well over a century old, with one of the earliest recorded examples being Sojourner Truth’s widely renowned “Ain’t I a Woman?” speech given at the 1851 Women’s Convention in Akron, Ohio. The term “intersectionality” was later coined by American civil rights advocate and legal scholar Dr. Kimberlé Crenshaw, who, much like Sojourner Truth, sought to better explain the oppression that African American women experience (Crenshaw, 1989). In her groundbreaking 1989 paper, Crenshaw emphasized that the intersectional experience of African American women is “greater than the sum of racism or sexism” (p. 140; Crenshaw, 1989). In other words, when an African American woman experiences discrimination, not only is it impossible for her to identify which aspect of her identity was the target of the discrimination, but she will also experience forms of discrimination that are distinctly different from those experienced by her African American male and White female counterparts.  Intersectionality is now defined more broadly as “the complex, cumulative way in which the effects of multiple forms of discrimination (such as racism, sexism, and classism) combine,  3 overlap, or intersect especially in the experiences of marginalized individuals or groups” (Merriam-Webster, n.d.). In addition, since the coining of the term, intersectionality has been extensively used as a research paradigm for studying a wide variety of intersectional identities in multiple contexts (Hancock, 2007). For example, Hankivsky and Christoffersen (2008) emphasized the importance of intersectionality in the field of public health because it embraces the complex aspects of social inequities that contribute to health inequities. For this reason, intersectionality is an important part of understanding the health care experiences of older rural African Americans, who exist at the intersection of three marginalized identities.  Although researchers have made significant efforts to increase research regarding the health care experiences of POC, older adults, and rural populations, less is known about the health care experiences of older rural African Americans. An updated search on Google Scholar in August 2023 using the key terms “health care experiences,” “rural,” and “older African Americans” or “older Black Americans” provided 119 results. However, only ten of these results were peer-reviewed research articles that included older African American participants, including participants from potentially rural areas. Of these ten, one was a case study, and the remaining nine did not provide unique insights into the health care experiences of older rural African Americans, as their responses were combined in less intersectional groups (e.g., African Americans, older African Americans). Given how the cumulative impact of intersectional social inequities contributes to health and healthcare disparities, the lack of attention paid to the healthcare experiences of older rural African Americans constitutes a significant gap in the literature.  Due to the relative lack of research focusing on the unique experiences of this intersectional group, qualitative research regarding the health care experiences of older rural  4 African Americans may be an important first step in broadening this literature base. Furthermore, qualitative research with this group would best capture the lived experiences of older rural African Americans from their perspective, using their own voice (Sofaer, 1999). Thematic analysis is a qualitative method especially well-suited to balancing the lived experiences of older rural African Americans with the systemic factors that contribute to these experiences (Adebayo et al., 2020).  Past research regarding diverse healthcare experiences has utilized cultural competency models (Campinha-Bacote, 2009), which tend to emphasize the role of the medical practitioner and measure success based on the knowledge of the practitioner and the presence of appropriate training (Yeung, 2016). By contrast, the cultural safety framework places greater emphasis on the experience of the patient and measures success based on the patient’s feelings of safety while receiving their medical care (Yeung, 2016). Developing a cultural safety perspective for older rural African Americans will provide insight into the multiple systems that influence their healthcare experiences.  Race Key Concepts and Language Use Race as a Social Construct When discussing the topic of race, one must first understand that the concept of race is socially constructed (Fuentes et al., 2019). The current conceptualization of race as a categorization system for humans based on visible characteristics emerged over the course of the past five centuries and was heavily influenced by European colonialism (Fuentes et al., 2019). Although there is evidence of race-like categorization being used among ancient peoples (Goldman et al., 2013), it is important to understand that the concept of race that emerged in the  5 17th century is closely tied to colonialism, imperialism, and the enslavement of Africans (Fuentes et al., 2019). Since then, the concept of race has been used to dehumanize people and as a means of justifying all manner of atrocities including slavery and genocide (Fuentes et al., 2019).  Some researchers have attempted to justify the systems of oppression surrounding race by proposing biological justifications for the concept (e.g., Galton, 1883). As the field of genetics rose to prominence, there was a boom in research seeking to determine if there was a genetic basis for race (Fuentes et al., 2019). After over a century of debate, the biological and social sciences reached a consensus that race is a social construct that does not accurately represent the full variation of human genetics (Fuentes et al., 2019; Tishkoff & Kidd, 2004; Yudell et al., 2016), and the notion of any biological basis for race was firmly struck down (Reich, 2018). However, the social impact of race as a construct has been profound due to how it was used to structure global society for centuries (Salter et al., 2017). Therefore, while race is biologically meaningless, the social implications of race are significant and far reaching. Racism and Racial Discrimination   The American Psychological Association’s (APA) Dictionary of Psychology defined racism as “a form of prejudice that assumes that the members of racial categories have distinctive characteristics and that these differences result in some racial groups being inferior to others” (American Psychological Association [APA], n.d.-b). Racism typically includes negative emotional responses, acceptance of negative stereotypes, and racial discrimination (APA, n.d.-b). Discrimination is the “process in which a member or members of a socially defined group are treated differently due to their membership in the group” (p. 288; Mouton et al., 2010). Discrimination is the outward manifestation of prejudice and thus usually entails negative  6 treatment of marginalized groups (APA, 2022). African Americans experience racial discrimination across a variety of contexts from school, to work, and to healthcare (Robert Wood Johnson Foundation, 2017). This, in part, is due to the multiple levels at which racism occurs (Jones, 2000). Dr. Camara Jones (2000) proposed three levels of racism: internalized, personally mediated, and institutionalized. According to Jones (2000), internalized racism occurs when members of stigmatized racial groups take on unfavorable ideas about their own capabilities and intrinsic worth. Besides the harmful effect this has on individuals, internalized racism also undermines collective action by creating feelings of resignation, helplessness, and hopelessness (Jones, 2000). These attitudes, in turn, contribute to behaviors such as dropping out of school, failing to vote, and risky health behaviors (Jones, 2000). Other models describing levels of racism refer to this level as individual racism (National Museum of African American History and Culture [NMAAHC], 2021). Individual racism includes the thoughts and beliefs contained within all individuals that support and uphold racism (NMAAHC, 2021). Thus, the beliefs of both perpetrators and targets are included in this level (NMAAHC, 2021). The next level of racism is personally mediated racism, which refers to the prejudice and discrimination that occurs between individuals (Jones, 2000). This is what people often think of when they encounter the term “racism” (Jones, 2000). Personally mediated racism is condoned by societal norms and can be intentional or unintentional (Jones, 2000). Personally mediated racism can be exhibited in a variety of ways including a lack of respect, suspicion, devaluation, scapegoating, and dehumanization (Jones, 2000). In other models, this level of racism is referred to as interpersonal racism and occurs once individual racism gets brought into interactions with  7 other people (NMAAHC, 2021). This level of racism can occur in a variety of relationships, including between patients and their providers (Jones, 2002).  The third level, institutionalized racism refers to the differences in access to goods, services, and opportunities granted to different racial groups (Jones, 2000). According to Jones (2000), institutionalized racism includes the history of wrongs committed against stigmatized racial groups and is reflected in laws, policies, practices, and procedures that create inherited disadvantage. Institutionalized racism is reflected in differences in access to power and material conditions such as quality education, secure housing, employment opportunities, and appropriate healthcare (Jones, 2000). Per Jones’s (2000, 2002) descriptions, there are clear connections between each level of racism and the health of POC. Since the inception of Jones’s (2000) three level model of racism, other researchers have proposed a fourth level of racism known as structural racism (Adkins-Jackson et al., 2022; Z. Bailey et al., 2017). Initially, the terms institutional racism and structural racism were conflated (L. Dean, 2022) and often used interchangeably (Williams et al., 2019). Jones (2002) herself described institutional racism as “structural, having been codified in our institutions of custom, practice, and law” (p. 1212). Later, Z. Bailey and colleagues (2017) offered a contemporary definition that helped differentiate between structural racism and institutional racism. They asserted that structural racism “involves interconnected institutions, whose linkages are historically rooted and culturally reinforced” (p. 1454, Z. Bailey et al., 2017). In other words, structural racism is the level above institutional racism which includes all institutions. This level of racism includes the totality of methods by which societies promote discrimination through mutually reinforcing systems of inequity (Z. Bailey et al., 2017). These systems, in turn,  8 reinforce discriminatory beliefs, values, and resource allocations, all of which increase the likelihood of adverse health outcomes (Z. Bailey et al., 2017). The self-reinforcing nature of structural racism is connected to the concepts of implicit and explicit bias (Osta & Vasquez, 2019). Explicit bias occurs when individuals are conscious of the prejudices and attitudes they hold for specific groups (National Center for Cultural Competence [NCCC], 2017). Explicit bias can manifest as overtly negative behavior like verbal and physical abuse, or more covert actions like exclusion (NCCC, 2017). By contrast, implicit bias, or unconscious bias, is the unconscious association of stereotypes or attitudes towards certain groups, leading to actions and decisions that contradict one’s beliefs about fairness and equality (Osta & Vasquez, 2019). Many studies have found that implicit bias occurs even in individuals who consciously hold nonprejudiced attitudes (see Hardin & Banaji, 2013 for review). This can result in biased decisions in various aspects of life, such as job selection, promotion selection, classroom placement, and patient treatment options (Osta & Vasquez, 2019). The negative outcomes from these decisions then reinforce negative implicit bias by seemingly supporting the idea that certain groups are inferior (Osta & Vasquez, 2019). This, in turn, reinforces structural racism (Osta & Vasquez, 2019). Black Groups in the United States   The broader umbrella of Black people in the United States includes African Americans, Black Hispanic and Latino Americans, Afro-Caribbean immigrants and their descendants, African immigrants and their descendants, as well as a much smaller percentage of Black people who immigrated to the United States from Europe and Asia (Anderson, 2015; Gonzalez-Barrera, 2022; Tamir, 2022; Tamir et al., 2021). Each of these groups have their own unique historical and cultural backgrounds that impact their sense of identity (Cox & Tamir, 2022; Gonzalez- 9 Barrera, 2022), how they relate to living in the United States (Cox & Edwards, 2022), and even how they communicate with their health care providers (Adebayo et al., 2020). The beginning of the Black population in the United States began with the transatlantic slave trade and the arrival of the first recorded enslaved African person in 1619 (Tamir & Anderson, 2022). Centuries later, the descendants of enslaved African people living in the United States are usually referred to as “African Americans” (C. Martin et al., 2011). Other Black groups in the U.S., including Black Hispanic and Latino Americans and Afro-Caribbean immigrants and their descendants, are also descended from enslaved African people (Hamilton, 2020). However, they came to this country significantly later, in the early- to mid-twentieth century (Anderson, 2015; Palmer, 1974, 1995). The 1960s saw an especially sharp increase in the number of Black immigrants from Africa, the Caribbean, and Europe, following the Immigration and Nationality Act of 1965 (Anderson, 2015). Furthermore, over half the Black immigrants currently living in the U.S. arrived after 2000 (Tamir & Anderson, 2022). The topic of who is or is not considered African American has been a topic of much debate (Berlin, 2010). However, Black immigrants from around the world notably came to the U.S. of their own volition and centuries after the ancestors of their African American counterparts. In fact, many of these immigrants came to the U.S. for economic advancement (Hamilton, 2020). Still others came to the U.S. as refugees seeking asylum (Anderson, 2015). Paradoxically to the anti-Black racism they face once they arrive, many Black immigrants still view the U.S. as “the land of opportunity” (K. Thomas, 2023). Meanwhile, to African Americans the U.S. is the home of centuries of historical oppression and generational trauma (Cox & Tamir, 2022). Although African Americans and their ancestors have fought for and achieved many social advancements, they have a much longer history with the worst aspects of American society, including with  10 regards to health and healthcare (Washington, 2008). It is because of this long history in the U.S., especially in the south where the current study takes place, that this study focused specifically on the healthcare experiences of African Americans. Language Use in this Paper   The current study examined the healthcare experiences and attitudes of individuals who identified as African American. However, extant research examining race does not always differentiate between Black groups, and readers should not assume what group or groups the researchers included under the umbrella of “Black.” While all members of the various Black social groups in the United States are likely to experience anti-Black racism (Gonzalez-Barrera, 2022; V. Johnson, 2016; Ruggs et al., 2023), they have unique cultural contexts that can have specific implications for how they relate to their Blackness and experiences (Cox & Tamir, 2022; V. Johnson, 2016). Thus, the language used when reviewing the literature will directly reflect the language used by the cited sources, while the language reflected in all other areas of this paper reflect the sample population (i.e., older rural African Americans). Historical Context of African Americans in the Southern United States As previously stated, one of the most distinguishing differences between African Americans and other Black groups in the United States is their historical context (Adebayo et al., 2020) and associated generational trauma (Cox & Tamir, 2022). Anti-Black prejudice and discrimination in the U.S. are the legacy of slavery and segregationist policies post-slavery (C. Bailey, 2022). Following Abraham Lincoln’s signing of the Emancipation Proclamation in 1863, declaring all enslaved people in Confederate-held territories were free (National Archives and Records Administration [NARA], 2022a), three important amendments were made to the U.S.  11 Constitution that kicked off the Reconstruction Era (“U.S. Senate: Landmark Legislation: Thirteenth, Fourteenth, & Fifteenth Amendments,” 2020). The first reconstruction amendment was the Thirteenth Amendment ratified in 1865 which abolished slavery and forced servitude, except for those who are duly convicted of a crime (NARA, 2022b). Modern scholars have explored how that ending specifier provided a loophole of sorts that was exploited and contributed to the mass incarceration of African American men (Alexander, 2010). The second reconstruction amendment was the Fourteenth Amendment ratified in 1868, which granted African Americans citizenship (NARA, 2022c). The third and final reconstruction amendment was the Fifteenth Amendment ratified in 1870, which, at least on paper, gave African American men the right to vote (NARA, 2022d).  The following post-war Reconstruction Era began as a period of progress for African Americans (Bennett, 1969). However, by the late 1890s, racial segregation and disenfranchisement were being enforced by Jim Crow laws passed by Southern states (Pilgrim, 2012). Under Jim Crow, signs were placed telling Black people where they were legally allowed to walk, talk, eat, drink, and rest (Pilgrim, 2012). Although most African Americans complied with these laws to avoid racially motivated violence, the end of the 19th century saw a dramatic increase in racially discriminatory laws and acts of violence against African Americans (Pilgrim, 2012). These issues were furthered when the Supreme Court ruled in favor of “separate but equal” accommodations for Black people in Plessy v. Ferguson in 1896 (NARA, 2022e). This court ruling sent a clear message that discrimination against Black people was acceptable, especially in southern and border states (Pilgrim, 2012). In the years to follow, African Americans living in southern states experienced widespread obstacles to economic opportunities and resources, voter suppression and disenfranchisement, private acts of violence, and  12 widespread racial violence that went unchecked or was even encouraged by government authorities (Pilgrim, 2012). In many cases, acts of racial violence were carried out with police participation (Raper, 1933).  To escape the segregation, discrimination, violence, and poor economic conditions in the rural South, approximately six million African Americans moved to urban areas of the Northeast, Midwest, and West between 1910 and 1970 in what was later referred to as the Great Migration (NARA, 2021). Since 1970, however, cities in the Northeast and Midwest have deindustrialized, and the “New South” experienced a growth in job opportunities with the bonus of having lower costs of living (Frey, 2022). These factors, along with the perception of lessening discrimination and the desire to reunite with cultural and familial ties have resulted in many African Americans returning to the southern states in what many have called the New Great Migration (Frey, 2022). Despite the initial mass exodus especially from the Deep South (Frey, 2022), according to the 2020 U.S. census, Mississippi has the highest percentage of African Americans per capita of any state at 36.6% (U.S. Census Bureau, n.d.). In fact, many of the older adults currently living in Mississippi were not part of the Great Migration or subsequent New Great Migration and have lived in the South for generations (Adams-Price & Israel, 2022). With this established geographical and sociopolitical context, there is another important facet of history that has contributed to health and healthcare disparities in older African Americans. Medical Wrongdoings and Mistrust Adebayo and colleagues (2020) identified mistrust as a major theme when examining the experiences African Americans have with the U.S. healthcare system. This lack of trust makes sense when one considers the long history of abuse that African Americans have experienced at the hands of researchers and the health professions. Perhaps the most well-known example of  13 this was the Tuskegee Syphilis Experiment due to its impact on the human subject review and approval process for research (“Protection of Human Subjects; Belmont Report: Notice of Report for Public Comment,” 1979). In this study, researchers followed syphilis disease progression in African American men between 1932 and 1972 (Centers for Disease Control and Prevention [CDC], 2022). During the 40 years of data collection, participants’ informed consent was not collected, and no treatment was offered to participants even after penicillin became the standard treatment for syphilis in the mid-1940s (CDC, 2022). This study had a profound impact on medical trust for African Americans because of the extent and duration of the deception involved (Scharff et al., 2010). However, this was not the first, nor would it be the last, of betrayals by researchers and health professionals.  Since at least the eighteenth century, there have been numerous instances of dangerous, involuntary, and nontherapeutic medical experimentation on African Americans (Washington, 2008). One of the earlier examples of this is how Marion Sims, who was later elected president of the American Medical Association in 1875 and was venerated for the advances he made in gynecological surgery, first developed his instruments and techniques through experimentation on Black female slaves in the 1840s (Washington, 2008). In addition to starting well before the Tuskegee Syphilis Study, there are also alarmingly recent examples of nonconsensual medical experimentation. One such example that took place in 1998 involved giving Black boys from poor families in New York City infusions of the cardiotoxic drug fenfluramine to study a hypothesized genetic etiology of aggressive behavior (Washington, 2008). This means that the history of medical abuses against African Americans extends from centuries back and into recent living memory.  14 Due to abuses like those described above, African Americans in this country have a well-established mistrust of health care providers (Cuevas et al., 2016; Durant et al., 2011). It should be noted that the mistrust that many African Americans report has more to do with a lack of trust in the genuineness of care provided by their medical providers rather than a lack of trust in their competency (Durant et al., 2011). For example, there is also significant fear of being subjected to experimentation (Mays et al., 2007). Because of known experimentation taking place in the past, as described above, many African Americans have an active fear of being harmed by researchers (Lang et al., 2013). In other studies, African Americans have expressed similar distrust of taking medications without receiving clear instructions on how to take them (Durant et al., 2011; Mays et al., 2007). Still other findings indicated that when African Americans expressed fear of being exposed to potentially toxic settings and/or medications they felt like researchers dismissed their concerns due to their skin color (Ferrera et al., 2015). Another factor that has contributed to African American’s perceptions of the trustworthiness of medical professionals was the perception that medical professionals pursued their careers as a quest for profit (Jacobs et al., 2006). The impact that this medical mistrust has on health outcomes cannot be understated. Research has found clear evidence that distrust in their health care providers inhibited treatment-seeking behavior and treatment adherence in African American patients (Jacobs et al., 2006). By contrast, trust in their health care providers was linked to treatment-seeking behavior and promoted patient honesty and treatment adherence (Jacobs et al., 2006).  Health and Healthcare Disparities There is considerable evidence that African Americans experience racial discrimination in the United States healthcare system (Z. Bailey et al., 2017; Krieger et al., 2011; Lau et al., 2012). This discrimination can occur in a variety of health care contexts. For example, Schrader  15 and Lewis (2013) found evidence of significant disparities in how African Americans were treated in an emergency department triage such that they experienced significantly longer wait times compared to case-matched Whites. Similarly, Karve and colleagues (2011) found that when African Americans experienced serious health issues that warranted emergency attention, medical intervention was significantly slower compared to Whites. Even in relatively safe environments, perceived discrimination experienced by African Americans in medical contexts has been linked to reports of not having spent enough time with the physician and not being as involved in decision-making about their own health as they would desire (Benjamins & Middleton, 2019).  To make matters worse, racial discrimination’s impact on the health of African Americans is not limited to how quickly medical professionals respond or how much time they spend with patients. The experience of discrimination has itself been linked to earlier onset of disease and mortality resulting from cascade of biochemical stress reactions in the body caused by chronic experiences of mistreatment (Mays et al., 2007). These resulting health disparities start early. According to research by the March of Dimes (2022), African American babies born between 2019 and 2021 were about twice as likely to be born with low birthweight and three times as likely to be born with very low birthweight compared to White babies born during that same time. In addition, African American mothers are more than three times more likely to experience maternal death (Melillo, 2020). As they enter adulthood, other health disparities begin to emerge. One report by the CDC (2017) indicated that more young African American adults were living with diseases more common in older adults (i.e., high blood pressure, diabetes, stroke) than their White peers. Similarly, Woolf and colleagues (2018) found evidence that African Americans are more likely to develop chronic health conditions at younger ages (20 to  16 40 years old). These trends may be due to social factors and health risks that affect African American adults at younger ages including unemployment, living in poverty, not owning their own home, not being able to afford to see a doctor, higher rates of smoking, lack of physical activity, and higher rates of obesity (CDC, 2017).  These health disparities that begin in birth continue into death. African Americans have lower life expectancies, living an average of five years less compared to White Americans (Arias, 2007), and are more likely to die at early ages from all causes (CDC, 2017). In addition, there are significant differences in morbidity and mortality rates. Morbidity rates describe the prevalence or incidence of specific diseases while mortality rates describe the rate of deaths, either in general (all-cause) or due to specific causes, in a particular population (Porta, 2014). While African American mortality rates have improved across time, in 2015 African American mortality rates were still 1.2 times greater than those of their White counterparts (Cunningham, 2017). African Americans also have higher death rates in midlife from chronic health issues (e.g., diabetes, alcohol-related liver disease, obesity, etc.), drug overdoses, homicides, and suicides (Woolf et al., 2018). These disparities even exist relative to other POC. S. Cross and colleagues (2021) found that, across all three US Census-categorized areas, non-Hispanic Black adults had higher rates of age-adjusted mortality rates compared to any other racial or ethnic group.   In the field of psychology, research regarding racially and ethnically diverse populations has risen as the racial and ethnic diversity of the United States has increased (Rabe, 2023). Similarly, research regarding mental health care disparities in racial and ethnic minorities has also been on the rise (Cook et al., 2019). For example, research has shown that Black adults reported lower rates of lifetime mental health disorders compared to their White counterparts  17 (Heeringa et al., 2004). However, other research suggests that Black adults may have higher rates of schizophrenia (Kendler et al., 1996; Kessler et al., 2005; Neighbors et al., 2003). Some research has found that African Americans were nearly five times as likely to be diagnosed with schizophrenia compared to their White counterparts (Barnes, 2004). This is consistent with how Black adults with schizophrenia have historically been overrepresented in state psychiatric hospitals (Snowden & Cheung, 1990). Although some research indicates that clinicians overdiagnose Black adults with schizophrenia and underdiagnose them with affective disorders (Jarvis, 2012; Neighbors et al., 2003), other research suggests that clinician error alone is not likely to account for the observed differences (Neighbors et al., 2003).  While diagnosis rates are very similar for most diagnoses, there are important disparities in mental health care and mental health outcomes (McGuire & Miranda, 2008). For example, research has found that despite major depression being less common among Black Americans than White Americans, those with the diagnosis report more severe symptoms (Williams et al., 2007) and greater persistence of illness (Breslau, 2006). Regarding disparities in the quality of mental health care provided, McGuire and Miranda (2008) highlighted discrimination as the primary source of difference. For starters, much like in medical settings, perceived discrimination in mental health settings has been linked to underutilization of mental health services (Burgess et al., 2008). For those that do seek out care, stereotyping by their provider may lead to differences in therapy modality and psychiatric medication prescriptions (McGuire & Miranda, 2008). With a better understanding of the historical background (i.e., slavery, Jim Crow, unethical medical research) and structural issues (i.e., structural racism’s contribution to health and healthcare disparities), one can better understand the context of African American healthcare interactions (i.e., the social component of healthcare).  18 Communication Challenges Health Literacy When considering social challenges that can impact an individual's experience with healthcare, one must begin by examining what researchers call social determinants of health. The World Health Organization (WHO; 2013) defined social determinants of health as environmental conditions in which individuals are born, live, work, age, etc. that impact a variety of health, functioning, and quality-of-life outcomes. Some examples of social determinants of health include income, education level, working status, social inclusion and nondiscrimination, and access to health care (WHO, 2013). One social determinant of health that was a focus of the current study was health literacy. Santana and colleagues (2021) recently provided an updated definition of health literacy that reflects how it functions at both the individual and organizational level. In their new definition, Santana et al. (2021) defined personal health literacy as “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others” (p. S259). By contrast, they defined organizational health literacy as “the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others” (p. S259; Santana et al., 2021). The literature prior to the inception of these new definitions focused on personal health literacy. As such, the following review of previous research largely uses the term “health literacy” to refer to what Santana and colleagues’ (2021) updated definition referred to as “personal health literacy.” According to extant literature, health literacy is one of the single best predictors of health care status in the United States (Adebayo et al., 2020), and low health literacy puts people at  19 increased risk for poor health outcomes (Agarwal et al., 2017). Regarding African American health literacy, it is essential to understand that health literacy is highly associated with other social determinants of health like education level (Lee et al., 2014; Ownby et al., 2014) and that the relationship between race/ethnicity and health literacy is mediated by differences in educational opportunities (Ownby et al., 2014). These inequities in educational opportunities are themselves perpetuated by racial residential segregation and discrimination (Ownby et al., 2014; Wallace, 2014). Like many structural issues, there is a long-standing history that created and perpetuated these issues. As D. Cohen and colleagues (2012) note, historical practices including enforced illiteracy for enslaved people, segregation, and later disinvestment in urban African American communities have had a lasting impact on African American reading literacy levels. Historically, African Americans have scored lower than White Americans on most measures of literacy (D. Cohen et al., 2012). However, by most measures this literacy gap has become progressively smaller over time, it still exists (D. Cohen et al., 2012). For example, in 2015, African American students scored an average of 26 points lower than their White peers on the National Assessment of Educational Progress (NAEP) 4th and 8th grade exam (The Nation’s Report Card, 2015). Similar disparities have been observed in health literacy. For example, Chaudhry et al. (2011) found that even after adjusting for age, sex, education, health comorbidity, insurance status, and social support, 20.4% of Black patients had poor health literacy compared to 11.7% of White patients. These literacy and health literacy disparities are important because they can have a significant impact on how patients navigate the healthcare system (S. Davis et al., 2020). Regardless of race, limited literacy and health literacy make common health-related tasks like completing forms and understanding patient education materials more challenging (Kutner et al.,  20 2006). Limited literacy and health literacy have also been related to less knowledge of health services and possible health outcomes, poorer utilization of screening and prevention measures, poorer health behaviors, and worse treatment adherence (see DeWalt et al., 2004 for review). Health literacy has also been identified as a barrier to shared decision-making during health care visits (Peek et al., 2009). In other words, patients with limited literacy and health literacy face more difficulties in navigating the healthcare system, which makes the Black-White health literacy disparity even more important to address. However, some research suggests that health care providers may not be aware of this disparity (Muvuka et al., 2020). A study by Kelly and Haidet (2007) found that health care providers overestimated the health literacy scores of 54% of African American patients compared to 11% of non-Hispanic White patients and 36% of patients from another race/ethnicity. This means that for over half of their African American patients, health care providers misjudged at what level they needed to present health information and how much their patients were understanding. Given the apparent importance of health literacy and the well documented disparity in African American health literacy, recent attention has been given to methods of improving health literacy. Simmons et al. (2017) recommended that patients, health care providers, and community members all be involved in the design, implementation, and evaluation of health literacy initiatives. McKenna and colleagues (2018) had success with community-based programs aimed at increasing health literacy. Then, more recently, Muvuka and colleagues (2020) advised that health literacy disparities be addressed on both the part of the healthcare system and consumers. In other words, extant research indicated that community-based efforts geared toward improving both personal and organizational health literacy may provide the best results in bridging the health literacy gap.  21 Patient-Provider Relationship Dynamics and Communication When considering other key social factors, Adebayo and colleagues (2020) primarily cited culture and language barriers as additional social determinants of health. However, the issues they identified were mostly related to African immigrants, who came from a different country and may not even speak the same language as their providers (Adebayo et al., 2020). That said, there are other social dynamics that can play a role in how African Americans communicate with their health care providers. For example, a significant body of research has been dedicated to examining the effect of racial concordance. Racial concordance refers to when a patient and their provider share the same racial identity, while racial discordance refers to when a patient and their provider have different racial identities (Shen et al., 2018). As Shen and colleagues (2018) described in their systematic review, racial discordance was associated with poorer quality of care, but other research aimed at clarifying this relationship failed to illustrate why this was the case.  Data from the Medical Expenditure Panel Survey from 2002–2012 (Sweeney et al., 2016) found no significant effect of racial concordance on Black patients’ ratings of the quality of their physicians’ communication. However, other research found evidence that differences in communication with Black patients compared to White patients occurred and were related to cancer survival disparities (Penner et al., 2012). Penner and colleagues (2012) argued that implicit racial bias on the part of the physicians may have negatively impacted the quality of communication and that this in turn negatively impacted information exchange and quality of treatment. This may be because racial concordance has been found to predict specific differences in communication with patients (Cooper et al., 2003). Specifically, Cooper and colleagues (2003) found that race-concordant patient visits were longer, characterized by more positive patient  22 affect, and that patients in race-concordant visits rated their physicians as more actively engaging them in their health care decisions. This is significant because research has found that the quality of African American patients’ last appointment with a medical provider was related to their willingness to pursue later treatment (Hammond, 2010). Unfortunately, given that only 5.7% of US doctors are Black (Boyle, 2023), racial concordance is not always possible. However, there are other factors that appear to have a significant impact on patient-provider communication.  One such factor was patient-centered communication, a key component of high-quality health care that emphasizes the patient’s perspective and experience (Hawkins & Mitchell, 2018). Patient-centered communication focuses on the patient’s social and emotional well-being and emphasizes compassion, trust, rapport-building, and shared decision-making (Mauksch et al., 2008). Patient-centered communication has been demonstrated to be important for a variety of reasons (Hall et al., 2020). For example, Ali and Young (2020) found that patient-centered communication behaviors such as information exchange, emotional responsiveness, shared decision-making, enabling self-management, managing uncertainty, and rapport building are also related to trust in both White and African American patients. Similarly, Stewart and colleagues (2000) found that patient-centered communication was associated with patients having a better perception of the quality of their care, improved health status (i.e., less discomfort, less concern, and better mental health), and increased efficiency of care (i.e., fewer diagnostic tests and referrals needed to address patient problems). Moreover, Kuipers, Cramm, and Nieboer (2019) found that utilization of a patient-centered approach to care was positively related to both the social and physical well-being of patients. Thus, one would hope that physicians utilized patient-centered communication equally for all their patients regardless of race, but this has not been the case. For example, in their study analyzing audiotape and questionnaire data collected in 1998  23 and 2002, R. Johnson and colleagues (2004) discovered that physicians were 23% more verbally dominant and used 33% less patient-centered communication with African American patients, compared to White patients. Similarly, Ghods et al. (2008) found that primary care providers used less rapport building during visits with their African American patients.  Other research has found that there are barriers to shared decision-making, another component of patient-centered communication (Peek et al., 2009). Specifically, African American patients indicated that the patient-provider power imbalance was a barrier to shared decision-making and that this power imbalance was exacerbated by race (Peek et al., 2009). Peek and colleagues (2009) also found that patients’ lower feelings of self-efficacy, or the belief in their own abilities based on feelings of confidence and control, provided an additional barrier to shared decision-making. In addition, physicians’ failure to provide sufficient patient education, validate patient experiences, and poor interpersonal skills were additional barriers to shared decision-making (Peek et al., 2009). Another study noted that older male African American patients perceived their care as rushed and inattentive during primary care visits when they felt there was poor information exchange, that their concerns went unaddressed, and when they perceived their doctor as only caring about money (Mitchell et al., 2019).  Other research found that individualization, another patient-centered communication behavior in which health care providers tailor treatment to each patient, played a more significant role in achieving a sense of well-being, optimism, and authentic self-representation for African American patients compared to White patients (Radwin et al., 2013). Additional research has investigated the impact of positive physician affect. K. Martin and colleagues (2013) observed that positive physician affect, where the physician felt and expressed positive moods such as joy, interest, and alertness, was related to higher patient trust across all patient races including Black  24 patients. This expression of interest and care is another important component of patient-centered communication. However, research has found that African American patients and their physicians exhibited less positive affect during medical visits compared to White patients and their physicians (R. Johnson et al., 2004). Lastly, research indicated that self-advocacy on the part of patients appeared as another important aspect of patient-provider communication for African American patients. In their qualitative study of older male African American patients, Mitchell et al. (2019) discovered strong themes surrounding self-advocacy. They also noted that prevalence of participants’ reports of assertiveness, confidence, and persistence with their health care providers contradicts existing literature that portrayed African American men as less engaged and informed patients (Mitchell et al., 2019). Mitchell and colleagues (2019) argued, then, that older African American men, especially those of lower socioeconomic status, may benefit from additional support and advocacy to consistently receive patient centered care and communication. The researchers found that welcoming the help of highly engaged companions (e.g., spouses, adult children, friends, etc.) and proactively preparing for medical visits encouraged this communication (Mitchell et al., 2019). Research regarding female African American patients have also emphasized the importance of self-advocacy (Molina et al., 2015; Wiltshire et al., 2006). A qualitative study of African American women between the ages of 30 and 74 who had received abnormal mammogram results found that respondents described medical self-advocacy to be especially important for African Americans given the mistrust they feel and discrimination they encounter in medical settings (Molina et al., 2015). In this same study, respondents highlighted the importance of health care providers encouraging patient self-advocacy through providing information in a clear, informative, and empathetic manner (Molina et al., 2015). This  25 encouragement on the part of the provider may be especially important given that other research has found that, compared to other race patients, Black women were less likely to self-advocate (Wiltshire et al., 2006).  Taken together, patient-centered communication behaviors, patient self-advocacy, and encouragement of that self-advocacy by providers and trusted companions appeared to be important aspects of patient-provider communication for African American patients. That said, other factors of importance were considered for the current study of older rural African Americans. Age Key Concepts and Definitions Defining Old Age Defining older adulthood can be challenging because the age at which old age begins is dependent on cultural context (Perkinson & Solimeo, 2014). For example, the United Nations (UN) agreed that old age can generally be defined as 65+ years of age (UN, 2020). Similarly, the Encyclopedia Britannica (n.d.) reported that studies in developed Western countries generally favor a cutoff of either 60 or 65 years of age. However, in other cultures around the world, old age begins anywhere between the mid-40s and the 70s (Encyclopedia Britannica, n.d.). Another complication in identifying a cutoff for older adulthood is that many of the markers used to identify old age (i.e., workforce participation, social security enrollment) have changed over time (Moon et al., 2015). Regarding the current study, there are some additional considerations to keep in mind when defining older adulthood for rural African Americans. As previously described, African Americans live an average of five years less than White Americans (Arias, 2007), and are more likely to die at an early age from all causes (CDC, 2017).  26 Despite improvements in mortality rates across time, African American mortality rates were still 1.2 times greater than those of their White counterparts back in 2015 (Cunningham, 2017). Even compared to other POC, one study found that non-Hispanic Black adults had higher rates of age-adjusted mortality rates compared to any other racial or ethnic group (S. Cross et al., 2021). These disparities are especially large for rural African Americans, who were found to have higher mortality rates than any other group (S. Cross et al., 2021). This disparity was especially apparent among rural Black men (Ferdows et al., 2020). Even after controlling for income and unemployment, Black men in 2016 had the all-cause mortality rate (6,458 per 100,000 people) of urban and rural White men in the mid-1980s (Ferdows et al., 2020). Therefore, while most Western research publications tend to define older adulthood as beginning at either 60 or 65 years of age (Encyclopedia Britannica, n.d.), this may not be the most culturally appropriate age cutoff for the target population. To address this issue, the following literature review considers aging in general as well as specific issues that occur at the intersection of age and race. Ageism The APA Dictionary of Psychology defined ageism as “the tendency to be prejudiced against older adults, to negatively stereotype them (e.g., as unhealthy, helpless, or incompetent), and to discriminate against them, especially in employment and health care” (APA, n.d.-a). Ageism, like many other “-isms,” can occur in a variety of ways and at multiple levels. As described by Marques and colleagues (2020), “Ageism can operate both consciously (explicitly) and unconsciously (implicitly), and it can be expressed at three different levels: micro-level (individual), meso-level (social networks) and macro-level (institutional and cultural)” (p. 2). As with other forms of discrimination, ageism can negatively impact the health and healthcare experiences of the people it targets.   27 Health and Healthcare Disparities Care-related ageism can manifest in numerous ways (Regis College, 2021). This can include situations like staff members sharing an ageist joke or having implicit ageist thoughts and behaviors towards their older patients without their conscious awareness (Regis College, 2021). The latter can manifest in various forms, including providers dismissing treatable pathology, assuming that it is an aspect of normal aging, and treating the natural effect of aging as a disease (Regis College, 2021). Thus, many conditions, including chronic pain, fatigue, cognitive impairment, depression, and anxiety, can go undiagnosed or undertreated (Regis College, 2021). Alternatively, older adults can be overtreated when health care providers offer treatment recommendations based on age without performing the appropriate assessments (Regis College, 2021). Overtreatment of older adults is estimated to cost approximately $158 billion to $226 billion every year (Regis College, 2021). Similarly, older adults in the U.S. are often overprescribed on medications (Lown Institute, 2019). This issue with polypharmacy, or prescribing multiple medications to individual patients, has seen a 200% increase in the past 20 years (Lown Institute, 2019). As of 2019, 42% of older adults in the U.S. were taking five or more prescription medications, and nearly 20% took ten or more (Lown Institute, 2019). The consequences of this unseen epidemic have been staggering. Every day, 750 U.S. adults aged 65 and older are hospitalized as a result of serious side effects from one or more of their medications (Lown Institute, 2019). The Lown Institute (2019) has warned that approximately 150,000 older American adults will die premature deaths if nothing is done to change this trend. Perhaps it is unsurprising then that older adults are generally more skeptical of how helpful medical interventions will be relative to home remedies (Borders et al., 2004).   28 Internalized ageist beliefs can also negatively impact older adults’ health. Older patients who hold internalized ageist beliefs are less likely to seek health care and may ignore health issues because they believe them to be a normal sign of aging (Regis College, 2021). They are also less likely to engage in preventative behaviors like getting regular physical exams, eating healthily, exercising, and limiting tobacco and alcohol consumption (Regis College, 2021).  Communication Challenges Ageism in medical settings can also have a negative impact on communication between patients and their providers (Regis College, 2021). When working with older patients, providers might be patient and engaged (Regis College, 2021). They may also be less responsive to issues raised by the patient, favoring provider-raised topics instead (Regis College, 2021). They are also more likely to use “elderspeak,” where they speak with a slow pace, exaggerated intonation, elevated pitch and volume, and use simpler vocabulary (Regis College, 2021). Providers are also more likely to assume that older patients are cognitively impaired and fail to provide as much information as they would with younger patients (Regis College, 2021). These communication challenges can be further complicated by older patients’ sensory deficits, actual cognitive decline, and functional limitations (Regis College, 2021). The Intersection of Race and Age Increased attention has been given to the racial and ethnic diversity of older adults in recent decades (Abdou & Jackson, 2013). The field of minority aging grew in the United States as advocacy groups sought to bring attention to the disadvantaged portion of older African Americans beginning in the 1960s (Dowd & Bengston, 1978). When considering things like income, health, and housing, some scholars suggested that being both old and African American  29 constituted a double disadvantage (Markides et al., 1990; Mutchler & Burr, 2011). When one considers how agism is another form of discrimination that can and does occur in medical settings (Ben-Harush et al., 2016), there may be some truth to this. As one study of older African Americans put it, a theme of “added insult of ageism” (pp. 6) became apparent (Hansen et al., 2016). Furthermore, other research has found that older African Americans report less trust in their health care providers compared to White older adults (Musa et al., 2009). This double disadvantage and greater mistrust exemplify the importance of taking an intersectional approach to understanding people’s experiences with healthcare.  Rural Settings Defining Rural Regarding what counts as rural, there are similar issues with operationalization. The cutoff used to differentiate between urban and rural settings ranges from 2,500 to 50,000 depending on what specific definition is used (Cromartie, 2019). Furthermore, this definition has changed over time. When the Rural Housing Program began in 1949, it served communities that had fewer than 2,500 residents, but now it serves communities with less than 20,000 residents (Cromartie & Bucholtz, 2008). Meanwhile, researchers from the Economic Research Service (ERS) of the U.S. Department of Agriculture tend to separate rural from urban using a metropolitan versus micropolitan division as defined by the Office of Management and Budget (Cromartie, 2018). In this definition, the cutoff for metropolitan begins at 50,000 residents such that a given county is considered metropolitan if it has an urban cluster of more than 50,000 residents and micropolitan if it has an urban cluster of more than 10,000 but less than 50,000 residents (Office of Management and Budget, 2010). In addition, there are noncore counties,  30 which are remote areas that do not fit the definition of either a metropolitan or micropolitan area (U.S. Department of Agriculture-Economic Research Service, 2012). Specific Considerations Related to Health in Rural Areas Rural areas face several unique, interconnected challenges that contribute to health disparities. As described by the Rural Health Information Hub (2022f), several factors, including income level, educational attainment, race and ethnicity, and health literacy, all influence a person’s ability to access healthcare and meet their basic needs (e.g., clean water, safe housing). Unfortunately, rural residents are more likely to experience certain social factors that can negatively impact health, like lower income (Rural Health Information Hub, 2022f). The obstacles that are already present in rural areas, such as fewer options for obtaining healthy food and limited public transportation options, can exacerbate the impact of these more socioeconomic factors (Rural Health Information Hub, 2022f). Income, Employment, and Poverty Farrigan (2021) described the geography of rural poverty, explaining how people of lower income tend to be clustered together. Concentrated poverty in these areas leads to subpar housing and health conditions, increased rates of crime and school dropouts, as well as job displacement (Farrigan, 2021). These issues become self-perpetuating when they limit opportunities for poor residents and make it difficult to pursue alternatives (Farrigan, 2021). Furthermore, lower socioeconomic status and higher rates of poverty in rural areas are related to poorer health outcomes (Rural Health Information Hub, 2022f).     31 Access to Healthy and Affordable Food Many rural areas struggle with food deserts, areas with limited supplies of fresh, affordable foods (Rural Health Information Hub, 2022e). In rural communities, access to food can be limited by financial constraints or other factors, like distance from a grocery store or transportation issues (Rural Health Information Hub, 2022e). As the Rural Health Information Hub (2022e) pointed out, distance and transportation issues can lead many rural consumers to rely on less healthful and more costly food options, like what can be found at convenience stores and gas stations. Research by Fastrid and colleagues (2021) found that issues with access to healthful and affordable foods in rural Mississippi were related to significantly poorer nutritional intake and body mass index (BMI), even compared to other states.  Furthermore, some rural residents and households struggle with food insecurity, meaning they do not always have access to enough affordable and nourishing food (Rural Health Information Hub, 2022e). According to the United States Department of Agriculture Economic Research Service (USDA-ERS), food insecurity has been closely linked to chronic illness and poor health, which disproportionately impact people living in rural areas (Gregory & Coleman-Jensen, 2017). Prolonged food insecurity can negatively impact education, growth, output, mental and physical well-being, and family life (Gregory & Coleman-Jensen, 2017). Access to Healthcare Services There are several barriers to accessing healthcare services in rural communities, including how far away certain amenities are located, including health care facilities (Erwin et al., 2010; Miller & Vasan, 2021). The average time in transit by car it takes to reach a hospital is 17 minutes in rural areas, about 12 minutes in suburban areas, and just over 10 minutes in urban areas (Lam et al., 2018). In addition, rural communities often do not have access to public  32 transportation, have higher rates of uninsured patients, and have fewer health care providers per capita (Miller & Vasan, 2021). Even though approximately 20% of Americans live in rural settings, only approximately 10% of all doctors serve these rural communities (Gudbranson et al., 2017). Unfortunately, these numbers are not expected to improve. The federal government projected that by 2025 there will be a rural shortage of over 20,000 primary care physicians (Government Accountability Office, 2017).  Rural Health Disparities Individuals living in the rural U.S., especially those living in the rural South, experience more disparities in health than both individuals living in other rural areas of the United States and their urban counterparts (Murray et al., 2006; Miller & Vasan, 2021). The higher mortality rates seen in rural areas of some states in the U.S. compared to non-rural populations are referred to as the rural mortality penalty (Miller & Vasan, 2021). The lowest life expectancies in the nation are found in rural areas of the South, especially Appalachia, the Mississippi Delta Region, and the Alabama Black Belt (W. James et al., 2018). Furthermore, this alarming pattern has continued for the past 50 years (Singh & Siahpush, 2014). Although mortality rates are higher throughout the South, they are highest in rural areas of the East South-Central Region, which includes the states of Kentucky, Tennessee, Mississippi, and Alabama (W. James et al., 2018; Murray et al., 2006). Health disparities in rural areas can be attributed to various risk factors such as remote location, reduced socioeconomic status, increased prevalence of risky behaviors, restricted access to medical specialists and subspecialists, and scarcity of employment opportunities (Rural Health Information Hub, 2022d), as described above. Given these findings, it is imperative to address the disparities in resources and care that exist in rural communities,  33 especially in states like Mississippi, where more than 1.5 million people live in rural areas (Rural Health Information Hub, 2022b). Historical Context of Rural Communities in the United States As described by Lister and Joudrey (2023), much research has explored the concept of mistrust in rural communities, including mistrust of government and institutions (Grogan, 2019), mistrust of health services in rural racial and ethnic minorities (López-Cevallos et al., 2014), and the influence of politically conservatives' mistrust of scientific data on their adoption of public health recommendations (McLamore et al., 2022). Lister and Joudrey (2023) note that while these are important areas of scientific inquiry, they urge some caution. They expressed that examining mistrust of institutions and health services or susceptibility to misinformation in rural individuals without considering historical context could reinforce negative stereotypes about rural populations, especially the rural poor (Lister & Joudrey, 2023).   Derogatory views toward the rural poor in the United States date back to the earliest colonial days, when poor White colonists were frequently viewed as vagrants who should be discarded (Isenberg, 2017). In addition, rural Native American tribes experienced colonization and displacement, and, as previously described, the majority of rural African Americans can trace their ancestry to chattel slavery (Glenn, 2015). Since the end of the 1970s, historical influences like globalization, automation, and austerity policies have led to a progressive increase in the concentration of social and economic prosperity within a few global cities (Winant, 2023). This left many smaller cities and rural areas experiencing divestment, population decline, and deteriorating health (Winant, 2023). Winant (2023) described how these events took place at the same time as federal and state policies that reduced or eliminated rural hospitals and healthcare services and combined healthcare services among urban academic medical centers.  34 Meanwhile, public and private health care organizations at the time either failed to sufficiently intervene to curb opioid prescribing or declared opioid medications for chronic pain safe and effective, often with financial gain attached (Lister & Joudrey, 2023). These issues would then contribute to the opioid overdose epidemic (Lister & Joudrey, 2023). When one considers the historical context, suddenly rural communities’ mistrust of institutions and health services becomes apparent. Communication Challenges Health Literacy A study that compared the health literacy of rural and urban populations found that rural populations had lower health literacy (Zahnd et al., 2009). However, the researchers also found that after controlling known confounding variables such as race and ethnicity, education level, and income, this difference was no longer present (Zahnd et al., 2009). This suggests that lower health literacy in rural populations may be better attributed to socioeconomic and environmental factors. Unfortunately, many social determinants of health related to lower health literacy, lower educational attainment, and higher rates of poverty are more prevalent in rural communities (Rural Health Information Hub, 2022c). In addition, research has shown that besides the previously described issues with accessing and navigating the healthcare system, individuals from rural communities may also have a harder time obtaining health information (Rural Health Information Hub, 2022a). Trust in Information Provided A poll by the Kaiser Family Foundation (KFF; 2021) found that rural American’s trust in healthcare related to information about the COVID-19 vaccine varied by source. For example,  35 they found that 55% of participants reported trusting information from state or government officials, 66% reported trusting the FDA, and 86% reported trusting their own health care provider (KFF, 2021). Notably, this study suggests that rural American’s trust their own health care providers more than any other possible source of health information.  The Intersection of Race and Rural There are significant points of intersection when considering factors affecting the mental and physical health of older adults from a racial minority living in rural locations. For example, African Americans experience the highest rate (30.7%) of nonmetropolitan poverty compared to other racial and ethnic groups (Farrigan, 2021). Given that poverty is one of the most frequently cited barriers to both physical (Wheeler et al., 2018) and mental (Mojtabai, 2005) health care, this high rate of nonmetropolitan poverty has significant implications for older rural African Americans’ ability to access and later adhere to health care treatments. Across all age groups, significant health disparities exist for rural POC. A study by C. James and colleagues (2017) found that adult American Indians and Alaska Natives (AI/AN), non-Hispanic Black, and Hispanic adults living in rural areas reported higher rates of “fair” or “poor” health compared to their non-Hispanic White counterparts. There were also specific differences in morbidity rates (Porta, 2014). For example, C. James and colleagues (2017) also found that rural AI/AN and non-Hispanic Black adults more frequently endorsed having multiple chronic health conditions compared to their non-Hispanic White counterparts. They also found that rural, non-Hispanic Black adults were the most at risk for obesity and severe obesity (C. James et al., 2017).   There are also significant differences in mortality rates (Porta, 2014). With regards to disease-specific mortality rates, research by Aggarwal and colleagues (2021) found that mortality  36 rates related to heart disease, hypertension, stroke, and diabetes were all highest in rural Black adults. In addition, they found that despite improvements in the disparity between urban Black and White mortality rates, diabetes and hypertension mortality rates are two to three times higher among rural Black adults compared to their rural White counterparts (Aggarwal et al., 2021). With regards to all-cause mortality rates, research by S. Cross and colleagues (2021) found that between 1999 and 2019 rural areas had the highest age-adjusted mortality rates and that the disparity in age-adjusted all-cause mortality rates between rural and urban populations tripled between 1999 and 2019. Furthermore, they found that, across all three US Census-categorized areas, non-Hispanic Black adults had higher rates of age-adjusted all-cause mortality rates compared to any other racial or ethnic group (S. Cross et al., 2021). S. Cross and colleagues (2021) go on to suggest that these trends in mortality rates may at least be partially explained by rural hospital closures (Frakt, 2019) and the aftermath of the COVID-19 pandemic (J. Mueller et al., 2021).   After reviewing the variety of factors that can impact the health and healthcare experiences of older rural African Americans, the next step was to determine an appropriate framework and methodology that would best honor these unique challenges.  Conceptual Framework: Cultural Safety Key Terms When designing a study, one must consider what framework will allow for effective investigation of the underlying factors that may be associated with the outcomes in question (Ravitch & Riggan, 2017). Other important terms to be familiar with in the context of study design are model and theory (Li et al., 2023). One way to understand how frameworks, theories, and models relate to one another is to understand them as nested concepts organized by degree of  37 specificity (Varpio et al., 2020). Frameworks provide a set of conditions that depict the general assumptions and operational definitions of the phenomenon being studied (Li et al., 2023). Thus, frameworks can create boundaries for an investigation prior to the selection of appropriate research methodology (Li et al., 2023). Frameworks can be further divided into two different categories. Though the terms are sometimes mistakenly used interchangeably (Walden University Library, 2020), conceptual frameworks differ from theoretical frameworks both in terms of specificity and the types of questions they seek to answer (Varpio et al., 2020). Conceptual frameworks include one or more formal theories as well as other concepts and findings from empirical research and are often utilized in qualitative research (Walden University Library, 2020). Conceptual frameworks aim to gain a deeper understanding of the significance of a particular field of study and how it can advance our understanding (Varpio et al., 2020). Because they utilize a variety of concepts, conceptual frameworks allow researchers a greater degree of generalization to cases outside of the original population studied during the inception of the framework. (Casanave & Li, 2015). By contrast, theoretical frameworks utilize a single, formal theory and tend to be utilized more in quantitative research (Walden University Library, 2020). They seek to understand how a given theory can shape a study (Varpio et al., 2020). Theories provide the next layer of specificity by explaining what parts of a given framework are useful for describing a variety of relationships and outcomes and by making some broad assumptions about the relationships between ideas (Bunge, 1967; Reynolds, 1971). Finally, models utilize precise assumptions about a few variables within a theory to examine the outcomes of these assumptions (Nilsen, 2015). Due to the relative lack of research about the healthcare experiences of older rural African Americans, a conceptual framework was utilized to emphasize the importance of further research.  38 What is the Cultural Safety Framework? To address the multiple factors that impact the healthcare experiences of older rural African Americans, the current study utilized the cultural safety framework. The cultural safety framework was originally developed within the field of nursing to study Indigenous peoples in New Zealand (Ramsden, 1990). The original goal of the cultural safety framework was to provide a critical lens for examining the issues around health care delivery for marginalized populations (Ramsden, 1990). Thus, the cultural safety framework is well suited for exploring how health disparities in marginalized populations are impacted by a complex interaction of historical, structural, and social factors (Browne et al., 2009; Mkandawire-Valhmu, 2018). Furthermore, this framework addresses how these factors can foster healthcare practices that can be a source of trauma for marginalized populations (Adebayo et al., 2020).  Cultural Competency vs Cultural Safety Previous studies examining health care experiences in diverse populations have utilized cultural competency models (Campinha-Bacote, 2009). According to a review by Butler and colleagues (2016), at least 24 different cultural competence models have been designed for use with diverse groups. These models all contain key components of the concept of cultural competence. Cultural competence is most frequently defined as “a set of congruent behaviors, attitudes and policies that come together in a system, agency or among professionals and enables that system, agency or those professionals to work effectively in cross-cultural situations” (T. Cross, 1989; p. 2). Cultural competence has five key components: cultural awareness, cultural sensitivity, cultural knowledge, cultural skill, and dynamic process (Cai, 2016). Cultural awareness refers to the development of consciousness about the cultural values, beliefs, and norms held by  39 individuals from different cultures (Leininger & McFarland, 2014). Cultural awareness also encourages providers to consider how their own cultural backgrounds may impact how they provide care (Campinha-Bacote, 2011; Giger & Haddad, 2021). However, as Baba (2013) emphasized, cultural awareness notably does not include examination of the political or socioeconomic factors that contribute to cultural differences. Cultural sensitivity includes respecting cultural differences and demonstrating behaviors that are considered polite and respectful to people of different cultures (Baba, 2013; Cai, 2016). Cultural knowledge, as the wording suggests, includes seeking out and gaining knowledge about cultures different from one’s own (Campinha-Bacote, 2002). The most important cultural knowledge generally includes “dos” and “don’ts” for interacting with individuals of different cultures (Starr & Wallace, 2011). Cultural skill refers to the importance of collecting culturally relevant data for the assessment and diagnosis of a client’s presenting problem (Campinha-Bacote, 2002). Lastly, dynamic process refers to the idea that medical providers are “becoming culturally competent rather than being culturally competent” (p. 42; Campinha-Bacote, 2011). There are some notable similarities between the concept of cultural competence and the concept of cultural safety (Yeung, 2016). As a conceptual framework, cultural safety includes key concepts from cultural competence, including cultural awareness, cultural knowledge, and cultural sensitivity (Yeung, 2016). Cultural competence and cultural safety also share overlap with the concept of cultural proficiency (Yeung, 2016), which refers to the mindset of an individual or organization that allows them to interact with people from different cultures more effectively (Lindsey et al., 2019). Furthermore, both cultural competence and cultural safety aim to build trust between patients and their health care providers (Yeung, 2016). However, there are key differences between cultural competence and cultural safety.   40 The most significant difference between cultural competence and cultural safety, which informs all other differences, is their different approaches to culture (Yeung, 2016). The concept of cultural competency is based on a more traditional view of culture, which views culture as static, unchanging, and learnable (Yeung, 2016). As such, resulting cultural competency models tend to emphasize the role of the medical practitioner and measure success based on the knowledge of the practitioner and the presence of appropriate training (Yeung, 2016). The knowledge gained also tends to focus on more cognitive aspects of culture, such as values, traditions, and beliefs, as opposed to social determinants of health and the impact of colonization (Yeung, 2016). Cultural competence’s more traditional perspective of culture and emphasis on the training of practitioners have attracted criticism over the years (Li et al., 2023). Criticisms were made about the inherent simplification of culture and the underlying assumption that practitioners can become culturally competent just by learning enough about certain cultural groups (Kai et al., 2007). Others have indicated that this approach can put practitioners at greater risk of stereotyping because their training may create expectations for how their patients will think and behave (Yeung, 2016). As a result, various terms have been proposed as alternatives to challenge the limitations of conventional behavior-focused cultural competence (Li et al., 2023). In fact, one of the alternatives that have been advocated for is cultural safety (Fraser et al., 2018).  Cultural safety utilizes a more contemporary perspective of culture, where “culture is a complex system of meanings entrenched within historical, social, economic, and political processes” (p. 5; Yeung, 2016). This perspective also recognizes that differences exist even within cultures (Yeung, 2016). Thus, there is no way for a practitioner to ever learn all there is to know about a given culture (R. Dean, 2001). Cultural safety also acknowledges how the inherent power imbalance between patients and providers can itself be a barrier to effective clinical care  41 (Laverty et al., 2017). As such, cultural safety rejects the idea that health care providers should focus on learning cultural customs (Curtis et al., 2019). Instead, cultural safety emphasizes the importance of decolonizing the healthcare field, considering power differentials, implementing reflective practice, and allowing the patient to decide whether their clinical encounter is safe (Laverty et al., 2017; Papps & Ramsden, 1996). As such, cultural safety places greater emphasis on the experiences of patients and measures success based on the patient’s feelings of safety while receiving their medical care (Yeung, 2016). Another key feature of cultural safety is cultural humility, which includes the acknowledgement of oneself as someone who is always in the process of learning about other people’s experiences (Foronda, 2020). Cultural humility also encourages self-reflection to gain a better understanding of the sources of personal and systemic biases and privileges and how these can impact patient care (Kumagai & Lypson, 2009). This approach may sound familiar from previous descriptions of modern cultural competence. This is because newer cultural competence models have started including cultural humility and a greater focus on external factors that impact care, such as structural and personal discrimination (Butler et al., 2016). In other words, newer models of cultural competence are starting to incorporate aspects of cultural safety that have existed since the development of the cultural safety framework. Taken together, the cultural safety framework’s emphasis on cultural humility and the experiences of patients, as well as the use of a more contemporary perspective of culture, make the cultural safety model especially well-suited for examining the healthcare experiences of diverse populations in the modern era (Curtis et al., 2019). Furthermore, the ability of the cultural safety framework, as a conceptual framework, to be utilized in a variety of populations makes the framework a better fit for use in understudied populations for which there is no existing model (Casanave & Li, 2015).  42 Application Although the cultural safety framework was originally utilized to study health disparities in Indigenous peoples in New Zealand (Ramsden, 1990; Ramsden, 1997), recent studies have branched out from this original population. For example, this framework has since been utilized for conceptually framing studies of older Aboriginal Australian adults (Wettasinghe et al., 2020), rural Indigenous Canadians (Schill & Caxaj, 2019), as well as African Americans and African immigrants living in the United States (Adebayo et al., 2020). As such, it is reasonable to utilize this framework in the study of older rural African Americans. Like the cultural safety framework-informed meta-analysis conducted by Adebayo and colleagues (2020), the current study aimed to address the historical context, structural factors, and social determinants associated with the healthcare experiences of older rural African Americans.  The Current Study Goals of the Study The primary goal of this study was to examine the lived experiences of older rural African Americans with the healthcare system and their health care providers. Specifically, this study aimed to understand how discrimination, attitudes of trust vs mistrust, and communication challenges resulting from health literacy and the dynamics within the patient-health care provider relationship contribute to older rural African Americans’ decisions to seek treatment and adhere to treatment recommendations. In addition, this study aimed to better understand how older rural African Americans act as agents in their experiences with health and healthcare. A long-term secondary goal of this study is to improve community health and wellness by providing recommendations to health care providers on how they can improve their treatment of and communication with this group to provide more positive experiences with the healthcare system.  43 Rationale for Qualitative Design In keeping with the model established by previous studies utilizing the cultural safety framework (e.g., Wettasinghe et al., 2020) and addressing the gap in the literature described above, this study will utilize a qualitative design. As Sofaer (1999) describes, qualitative research methods lend themselves well to studies of health disparities given their ability to “[provide] rich descriptions of complex phenomena” (p. 1101) and “[give] voice to those whose views are rarely heard” (p. 1105). These qualities make qualitative methodology ideal for addressing the primary goal of this study. As stated above, this study aims to better understand the structural, historical, and social factors underlying the health disparities experienced by older rural African Americans in the southern United States, using their own words. Furthermore, as described by Rolfe and colleagues (2018), qualitative health research not only integrates participants’ perspectives in the research design and encourages them to share their diverse perspectives, but also treats participants as equal partners with the research team. When considering the vast history of abuse this population has experienced at the hands of medical professionals and researchers and how underrepresented this population is in medical research, the choice of qualitative methods was a simple but important one. Rationale for Thematic Approach In the current study, thematic analysis was utilized to identify, analyze, and report common patterns (themes) within the qualitative data. The decision to use thematic analysis over other qualitative analyses (e.g., discourse analysis, thematic decomposition analysis, interpretative phenomenological analysis, and grounded theory) was highly motivated by the background and goals of the study. Due to the importance placed upon the experiences of participants as described in their own words (Guest et al., 2012), phenomenological analysis and  44 thematic analysis were both considered for the current study. This shared emphasis on the perspective of participants has resulted in some researchers claiming that thematic analysis and phenomenology are compatible approaches (Guest et al., 2012). In fact, thematic analysis has been applied to phenomenological research for decades (Dapkus, 1985). The key difference between the two approaches is that the theme generation process used in thematic analysis is better equipped to include external factors that may influence participants’ experiences (Clarke & Braun, 2014). This is due to the compatibility of thematic analysis, especially the reflexive approach advocated by Braun and Clarke (2006), with social constructionist, poststructuralist, and critical approaches to qualitative research (Clarke & Braun, 2014). These approaches consider the socially constructed nature of reality (Berger & Luckmann, 2011), question the objectivity and stability of interpretive structures heavily influenced by systems of power (Lewis, 1982), and challenge systems of power (Geuss, 1981), respectively. As previously stated, cultural safety places heavy emphasis on both the patient's perspective and an understanding of culture as being heavily influenced by historical, social, economic, and political processes (Yeung, 2016). This may explain why thematic analysis has been widely used in both original studies (e.g., Wettasinghe et al., 2020) and meta-analyses (e.g., Adebayo et al., 2020) that used the cultural safety framework. Thematic analysis allows researchers to identify themes within qualitative data without being beholden to a specific theoretical framework and is thus a more flexible approach (Braun & Clarke, 2006). However, the flexibility of this analytical method should not be mistaken for a lack of scientific rigor or empiricism.  As Braun and Clarke (2006) outline, the key is to make decisions about how you want to conduct the thematic analysis and clearly communicate these decisions, beginning with what  45 form of thematic analysis will be utilized. Braun and Clarke (2006) describe three forms of thematic analysis. The first form is the essentialist or realist method, which reflects the actual experiences, meanings, and realities of participants (Braun & Clarke, 2006). Using an essentialist/realist approach allows researchers to theorize about motivations, experiences, and meaning in a relatively simple manner because this approach assumes there is a largely unidirectional relationship between meaning, experience, and the language used to describe these meanings and experiences (Potter & Wetherell, 1987; Widdicombe & Wooffitt, 1995). The second form is the constructionist method, which examines how the experiences, meanings, and realities reported by participants are the effects of a range of discourses at work within their given society (Braun & Clarke, 2006). In this method, meaning and experience are conceptualized as being socially constructed rather than contained within individuals (Burr, 1995). Thus, studies that utilize a constructionist framework for their thematic analysis cannot and do not examine individual motivation or reasoning (Braun & Clarke, 2006). Instead, they aim to theorize about the sociocultural and structural conditions that led to the individual accounts provided (Braun & Clarke, 2006). Thematic analyses that focus on latent themes, which are meant to capture underlying ideas, patterns, and assumptions, tend to be more constructionist (Braun & Clarke, 2006). That said, not all latent thematic analyses are constructionist (Braun & Clarke, 2006).  Meanwhile, the third form is the contextualist method, which balances elements of both essentialism and constructivism (Braun & Clarke, 2006). In doing so, the contextualist method reflects how individuals create meaning from their experiences and how the broader social context influences those meanings, while still maintaining a focus on the observable limits of an  46 individual’s reality (Braun & Clarke, 2006). Given the goals of this study and the lens of cultural safety that was used to frame it, a contextualist approach was utilized for theme development.  Research Questions To reach the goals of this study, 14 connected research questions were developed. For clarity, the research questions were organized into five sets according to the core issue they addressed. The first set of research questions aimed to understand what characteristics make an experience with a health care provider either positive or negative: • RQ1.1: How do older rural African Americans characterize a positive experience with health care providers?  • RQ1.2: How do older rural African Americans characterize a negative experience with health care providers?  The second set of research questions aimed to better understand the discrimination that older rural African Americans experience in healthcare settings and how experiences with discrimination may impact their healthcare decisions: • RQ2.1: How do older rural African Americans experience discrimination?  • RQ2.2: Do experiences with discrimination influence whether they seek medical treatment?  • RQ2.3: Do experiences with discrimination influence whether they adhere to medical recommendations?   The third set of research questions aimed to understand whether older rural African Americans trust the healthcare system, whether they trust their primary health care providers, and how their trust or lack thereof may impact their healthcare decisions: • RQ3.1: Do older rural African Americans trust the healthcare system? • RQ3.2: Do older rural African Americans trust their primary care providers?  47 • RQ3.3: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they pursue treatment?  • RQ3.4: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they adhere to medical recommendations?  The fourth set of research questions aimed to understand what communication barriers arise in older rural African American’s experiences with health care providers, how they address these communications barriers, and how communication barriers may impact their healthcare decisions: • RQ4.1: What communication barriers do older rural African Americans experience when interacting with health care providers? • RQ4.2: Do older rural African Americans feel comfortable addressing communication problems with their health care providers? Why or why not? • RQ4.3: What can health care providers do to improve how they communicate with older rural African Americans? The fifth and final set of research questions aimed to understand how older rural African Americans exercise their agency in addressing health issues and treatment barriers: • RQ5.1: What do older rural African Americans do to manage emerging health issues? • RQ5.2: How do older rural African Americans address treatment barriers? Hypotheses  Once a study’s research questions have been established, hypotheses provide a mechanism for “explicitly restating and clarifying the problem or research question under investigation” (p. 7, Chigbu, 2019). Scholars have provided various definitions for exactly what hypotheses are and what they accomplish for research. For example, Kerlinger (1956) described hypotheses as relational propositions made with the intention of clarifying the research problem, often with a statement regarding an anticipated relationship between two or more variables.  48 Creswell (1994) described hypotheses as formal statements that present the expected relationship(s) between an independent and dependent variable(s). Meanwhile, Ary and colleagues (1996) described hypotheses as tentative assertions that suggest a possible resolution to a problem or provide an explanation of the phenomena or circumstances surrounding that problem. That said, a multitude of scholars have argued that hypothesis formulation has little to no place in qualitative research (Bluhm et al., 2011; Malterud, 2001; Malterud & Hollnagel, 1999; Maudsley, 2011; Ulichny, 1991). While some of these scholars argue that hypotheses do not apply to qualitative research, citing the inductive nature of most qualitative research (Bluhm, et al., 2011; Maudsley, 2011; Ulichny, 1991), others argue that hypotheses in qualitative research are usable but cannot be tested or proven (Malterud, 2001; Malterud & Hollnagel, 1999). Other researchers have disagreed, arguing that hypotheses can be utilized and tested in qualitative research (Chigbu, 2019; Flyvbjerg, 2006; Sabatier, 1998; Sullivan & Sargeant, 2011). Chigbu (2019) offers recommendations on how to formulate hypotheses for qualitative research, noting that three types of hypotheses are commonly investigated through qualitative research: attributive, associative, and causal. According to Chigbu (2019), attributional hypotheses are intended to describe a scenario, situation, or event; associative hypotheses are intended to forecast an outcome; and causal hypotheses are intended to explain relationships. Given the types of questions this study sought to answer, all three types of hypotheses were utilized.  When generating hypotheses for qualitative research, one must consider the theoretical or conceptual framework being utilized as well as the intended method of analysis. Consistent with the use of the cultural safety framework and a contextualist model of analysis, the current study utilized a balance of inductive and deductive approaches. As described by Braun and Clarke  49 (2006), the inductive component means that coding and subsequent theme development will be based on the data themselves (bottom-up/inductive). Meanwhile, the deductive theoretical (or in this case, conceptual framework) thematic analysis component means that coding and theme development were influenced by the framework being utilized and results from extant literature (Braun & Clarke, 2006). With consideration of hypotheses, this means that the study’s hypotheses at least partially informed later coding and theme development. To prevent potential bias, the more deductive hypotheses were thoroughly grounded in the literature, while a largely exploratory (inductive) approach was taken with theme development to capture the lived experiences of the participants most accurately. Therefore, based on the literature described above, certain themes were expected to occur with regards to the five sets of research questions.  As with the research questions, the hypotheses were organized into five sets according to the core issue they addressed. The first set of hypotheses described the characteristics that make an experience with a health care provider either positive or negative: • H1.1: Positive experiences with health care providers will include feeling respected and listened to. • H1.2: Negative experiences with health care providers will include instances of discrimination and poor communication. The second set of hypotheses discussed discrimination that older rural African Americans experience in healthcare settings and how experiences with discrimination may impact their healthcare decisions: • H2.1: Instances of discrimination within the healthcare system will be frequently endorsed, and these experiences will be most frequently attributed to race; some instances of discrimination may also be attributed to age or other factors like gender, ethnicity, skin color, body size, etc. • H2.2: Experiences with discrimination will be related to instances of choosing not to pursue treatment.  50 • H2.3: Experiences with discrimination will be related to lower treatment adherence. The third set of hypotheses discussed whether older rural African Americans trust the healthcare system, whether they trust their primary health care providers, and how their trust or lack thereof may impact their healthcare decisions: • H3.1: Given historical and individual instances of mistreatment, mistrust of the healthcare system will be frequently endorsed. • H3.2: Mistrust of their primary health care provider will be less frequent than mistrust in the healthcare system. • H3.3: Greater mistrust will be related to decisions not to pursue treatment. • H3.4: Greater mistrust will be related to lower treatment adherence. The fourth set of hypotheses aimed to understand what communication barriers arise in older rural African American’s experiences with health care providers, how they address these communication barriers, and how communication barriers may impact their healthcare decisions: • H4.1: Older rural African Americans will experience communication barriers in the form of inequities in health literacy, their health care providers using too much technical language, a lack of information being provided to them, and a lack of shared decision-making. • H4.2: Some older rural African Americans will endorse feeling comfortable addressing communication problems with their health care providers, while others will not. Their reasons for this comfort, or lack thereof, will depend on whether there are other communication challenges, their level of trust in their provider, and what value they place of self-advocacy. • H4.3: Older rural African Americans will have suggestions such as the use of less technical language and providing more information for how providers can improve communication.  The fifth and final set of hypotheses described how older rural African Americans exercise their agency in addressing health issues and treatment barriers: • H5.1: Older rural African Americans take steps to address emerging health concerns.   51 • H5.2: When they experience barriers to seeking medical assistance, other steps will be taken.    52 CHAPTER II RESEARCH METHOD Participants A Priori Sample Size Having an a priori estimate of the number of participants needed for a study has great utility when planning out methods, seeking grant funding, or undergoing ethical reviews (Guest et al., 2006). In addition, as Fugard and Potts (2015) describe, it is considered good practice for researchers to clearly explain what they plan to do before conducting their work. In quantitative research, an a priori sample size can be calculated using a power analysis, in which one uses the chosen probability of finding a statistically significant result (power) with consideration of a given population effect magnitude (J. Cohen, 1988). While these calculations do require researchers to make some subjective decisions (Spiegelhalter & Freedman, 1986) regarding design factors like study context, desired level of power, and expected effect size of the observed phenomenon, power analysis can account for all these decisions and generate a conclusive minimum sample size (Norton & Strube, 2001). And although some reviewers may have unrealistic expectations for the actual degree of precision that can be executed regarding these subjective decisions (Bacchetti, 2002), power analysis is an expected part of quantitative research, especially research utilizing randomized trials (Schulz & Grimes, 2005). Further complications arise when considering how different fields of research have their own guidelines for interpreting effect magnitudes (Fugard & Potts, 2015). Even so, each field having its own  53 golden standard still provides direction for how to arrive at an a priori estimate of sample size that can satisfy grant funding agencies and journal reviewers alike.  Such standards are largely absent regarding calculating an a priori estimated sample size for qualitative research. This is because the aim of qualitative studies is to map out patterns observed in the collected data rather than to quantify an effect (Fugard & Potts, 2015). Nevertheless, some different stances on sample size for qualitative studies have developed over time. For example, Sandelowski (1995) argued that the sample size of a qualitative study should be small enough that the data can be managed efficiently but large enough that it provides a novel and nuanced understanding of participant experiences. According to Sandelowski (1995), the decision on how many participants are needed to reach the balance between these two goals is based upon the researcher’s judgment as they work with the data. Other researchers have tried to come to a more decisive conclusion regarding sample size. A major review of the collected works of prominent social scientists regarding this issue found that there was a broad range of recommendations from 12 to 101 (Baker & Edwards, 2012). Others in their review recommended the use of a mean (taken from the range recommended at the time) of 30 or 40, while another indicated that zero was a valid answer when considering that qualitative methods can be applied to observations or documents, and still others made no recommendations at all (Baker & Edwards, 2012). An earlier review by Onwuegbuzie and Leech (2007) also pointed out that the authors offering these recommendations for sample size rarely provide any insight into how they came to their numbers other than that the number accomplished their end goal(s). In this vein, Clarke and Braun (2013) recommended different numbers based on the type of data being collected and the overall size of the project. For example, they recommended that “small” projects need a sample of 6-10 participants for interviews, two to four for focus groups, 10-50 for  54 participant-generated text, and 10-100 for secondary sources. Meanwhile, they offered an upper limit of “400+” for large projects. As with other contributions to this line of research, they provided little indication of how they decided on these numbers. Indeed, few guidelines have been set into place (Guest et al., 2006), and those that have been established have been rejected largely because of the lack of empirical justification for the offered guidelines (Emmel, 2013).  Another approach to determining sample size for qualitative research is for researchers to continue sampling until they reach the point known as theoretical saturation, or the point at which no further themes can be identified (Glaser, 1965). However, researchers have provided a variety of recommendations for when and how to reach theoretical saturation. For example, works by Isman and colleagues (e.g., Isman, Ekéus, & Berggren, 2013; Isman, Mahmoud Warsame, et al., 2013) have reported reaching theoretical saturation after as little as six interviews. Guest and colleagues (2006) worked backwards by analyzing a sample of 60 interviews and found that theoretical saturation occurred within 12 interviews, with broader themes emerging after as little as six interviews. Meanwhile, Francis and colleagues (2010) took a more visual approach by starting their study with 10 interviews, developing themes based on these interviews, and then continuing to collect data and map out themes so they could visualize at what point they started seeing diminishing returns as fewer new themes took form. Using this method, they found that 17 interviews were sufficient. However, the major limitation of this sampling approach is that the saturation point for a given study can be hard to determine.  However, Fugard and Potts (2015) attempted to find a balance between objective and subjective approaches to this problem. Fugard and Pott (2015) clarify that their model makes three assumptions: (1) if a theme is present in the participant’s experience, it will come out during their interview; (2) themes are independent of one another; and (3) the depth analyzed  55 within theme hierarchies is limited by the number of times a theme-relevant event occurs and the number of similar themes discovered. Following these assumptions, their model qualitative power analysis incorporates four major components: (1) population theme prevalence, (2) statistical power, (3) sample size, and (4) desired number of theme instances. From there, one need only reference their tables for quantifying the required sample size based on population theme prevalence, desired level of power, and desired number of theme instances (Table 1 and 2; Fugard & Potts, 2015). Fugard and Potts (2015) also provide the following instructions for computing sample size and power. Let NB (x, k, π) denote the negative binomial probability mass function which calculates the probability that there will have been x failures before k events, each of which occurs with probability π. Now suppose the total sample size is N, the number of theme instances required is i, and the population theme prevalence is PTP. Then the power is computed as (Fugard & Potts, 2015; p.683):  ∑𝑁𝐵(𝑘, 𝑖, PTP)𝑁−𝑖𝑘=0 (1)  Let NB−1(p, k, π) denote the inverse, i.e., the quantile function, where p is the required power. Then the required sample size is computed as (Fugard & Potts, 2015; p.683):  𝑁𝐵−1(𝑝, 𝑖, PTP) + 𝑖 (2)  While it would be easy to assume a theme prevalence of 100% for themes of discrimination coming up in the target population, the population theme prevalence also accounts for whether the participants will report the theme (Fugard & Potts, 2015). As described  56 previously, there are many reasons why some participants may be hesitant to report certain themes, regardless of their real-world prevalence. As such, the current study utilized the recommended lower limit of 30% for theme prevalence (Fugard & Potts, 2015). To aid with theme recognition, a conservative approach was taken where at least five theme utterances were needed for a given prompt. Thus, if 80% power was used, as is common in quantitative studies (J. Cohen, 1998), 21 participants would be needed. If the more conservative 90% power was utilized, 30 participants would be needed. Thus, efforts were made to recruit 21 to 30 older rural African American participants. This a priori sample size was utilized with the intention of guiding recruitment efforts and preventing potential bias through an incorrectly determined thematic saturation point.  Inclusion Criteria Per the goals of this study, a sample of older African Americans residing in rural areas of Mississippi at the time of data collection was recruited. To operationalize inclusion criteria for this sample, extant literature was used to clarify the parameters of “African American,” “rural,” and “older adults.” As previously described, the term African American refers to the descendants of enslaved African people living in the United States (C. Martin et al., 2011). The first question that participants were asked was whether they identified as African American, as it was a requirement for participation. Because rural recruitment can be challenging even before considering the additional inclusion criteria of age and race (Collins, 2016), the more liberal micropolitan cutoff for rurality, where a given county does not contain an urban cluster of more than 50,000 residents (Office of Management and Budget, 2010), was utilized. As previously described, most publications use an age cutoff of 60 or 65 years old to determine older adulthood (Encyclopedia Britannica, n.d.). However, the average difference in life expectancy between  57 African American and White adults was approximately 5 years (Arias, 2007) and Mississippi had the lowest life expectancy (71.9 years old) of any state in the United States in 2020 (Arias et al., 2022). Thus, 55 years of age was determined to be a culturally appropriate cutoff to indicate older adulthood for the population of interest.  Exclusion Criteria The researchers initially used a cutoff of 45 years old to ensure that a sufficient sample size could be recruited. Using this cutoff, recruitment efforts yielded a sample of 64 participants, which was more than sufficient for the proposed analyses described later. Thus, for the current study, participants younger than the initially proposed cutoff of 55 years old were excluded. A total of 14 participants were excluded for this reason. Two additional participants were excluded because they were providing information regarding the experiences of a loved one for whom they acted as a companion or caregiver during medical visits. They were initially allowed to participate on behalf of their loved ones because of the unique perspective they could offer as trusted companions. However, they were ultimately excluded because the information they offered fell outside of the scope of the current study. One final participant was excluded because they did not consent to audio recording and thus did not have any associated qualitative data. After implementing these exclusion criteria, the a priori sample size was still successfully met and exceeded. A total of 47 rural African American participants (28 women, 19 men) ages 55 to 77 years old (M = 65.51, SD = 5.24) were included in the final analyses. Of these 47 participants, 14 (29.8%) had not completed high school, 25 (53.2%) were high school graduates, two (4.3%) had completed some college, one (2.1%) had completed a technical degree, three (6.4%) had completed a bachelor’s degree, and two (4.3%) had completed a graduate or professional degree. See Table 1 for participant demographics.  58 Table 1  Participant Demographic Characteristics Sample Characteristics n % M SD Age   65.51 5.24 Gender          Women 28 59.6        Men 19 40.4   Sexual orientation          Heterosexual 47 100   Relationship Status          Single 13 27.7        Married 19 40.4        Widowed 5 10.6        Divorced 5 10.6        Separated 5 10.6   Religious Affiliation          Christian 44 93.6        Spiritual 2 4.3        Declined to answer 1 2.1   Education          Less than high school 14 29.8        High school graduate 25 53.2        Some college 2 4.3        Technical school 1 2.1        Bachelor’s degree 3 6.4        Graduate or professional degree 2 4.3   Ever in the U.S. military           Yes 2 4.3         No 45 95.7     59 Table 1 (continued) Sample Characteristics n % M SD Work Status          Employed full-time 7 14.9        Employed part-time 3 6.4        Retired 26 55.3        Unemployed / On disability  11 23.4   Household income          Less than $20,000 22 46.8        $20,000 to $29,999 9 19.1        $30,000 to $39,999 7 14.9        $40,000 to $49,999 1 2.1        $50,000 or more 6 12.8        Declined to answer 2 4.3   Number of people living with participant   1.09 1.35 Note. This table shows participant responses to the demographic questions. Response options that received zero responses are not depicted. In addition, while the mean number of individuals living with the participants was 1.09, the most common response was “zero” (they live alone), endorsed by 20 participants. The second most common response was “one,” which was endorsed by 15 participants. Furthermore, “unemployed” and “on disability” are reported in one category above, because distinguishing between the two categories did not occur until after the first 20 interviews were completed because some participants indicated that the reason they were unemployed was due to disability. Recruitment Method and Considerations Several important considerations were made when recruiting from the target population of older rural African Americans. Issues of trust, fear of experimentation, communication difficulties, and logistical issues are commonly identified as barriers to research participation among African Americans (Hughes et al., 2017; Luebbert & Perez, 2016). However, several studies have developed recruitment recommendations to help address these barriers in the last several years (Barrett et al., 2017; Hughes et al., 2017; Lang et al., 2013; Luebbert & Perez,  60 2016). One of the factors that has been found to increase participant recruitment in African American samples is familiarity with the researcher (Hughes et al., 2017) and community outreach and engagement (Barrett et al., 2017; Lang et al., 2013). Specific recommendations for how this might be accomplished in the current study are community outreach focused on providing information about safeguards and protection of participant privacy (Barrett et al., 2017) and using a multifaceted community-based approach by being present in their communities, easily accessible, and engaging them cross-generationally (Lang et al., 2013).  Recruitment was accomplished through a combination of various nonprobability sampling methods, pulling participants from Lowndes and Oktibbeha counties in Mississippi. Both counties met the criterion of being micropolitan counties with no urban center larger than 50,000 people. In fact, neither county contained an urban center larger than 26,000 people, and efforts were made to recruit most participants from areas at least five miles away from their respective urban centers. This recruitment process began with posting flyers in Starkville, MS, and calling individuals who had previously participated in research at Mississippi State University and had provided their consent to be contacted about other research participation opportunities. This included participants from studies who were already familiar with the principal investigator.  Following community outreach recommendations, the principal investigator and the two other interviewers for the current study reached out to the coordinators of a rural Mississippi county community center, who had previously assisted in participant recruitment for a study conducted by members of the current study’s dissertation committee. The principal investigator met with the leaders of the community center, and together they coordinated a date for interviews to take place. The principal investigator provided flyers, and the leaders of the community center  61 gave an announcement about the study at the local church the Sunday before interviews. The principal investigator encouraged the leaders of the community center to reach out if they had any questions and asked that they provide the research lab phone number to individuals interested in participating in case they had any questions. The principal investigator also told the leaders of the community center that participants were welcome to bring friends and family if that made them feel more comfortable. The resulting participant turnout was so large that a sign-up sheet was created so that additional interview dates could be scheduled. Interviewers collaborated with interested individuals to schedule an additional two interview dates. In cases where interested participants were unable to attend the scheduled interview dates, individual meetings were scheduled. Before getting started on each interview day at the community center, the interviewers introduced themselves to those present, explained the study, and encouraged people to ask questions. Between recruitment from flyers, contacting previous research participants, and collaboration with the community center, the a priori sample size was exceeded. At the time of their interviews, participants were living in Starkville, Columbus, Crawford, and Artesia, Mississippi. Starkville is the county seat of Oktibbeha County, Mississippi (National Association of Counties, 2015) and had a population of 24,360 people in 2020 (U.S. Census Bureau, 2021). In 2020, 32.4% of the population of Starkville, MS, identified as “Black or African American” (U.S. Census Bureau, 2021). Columbus is the county seat of Lowndes County, Mississippi (National Association of Counties, 2015) and had a population of 24,085 in 2020 (U.S. Census Bureau, 2021). In 2020, 61.4% of the population of Columbus, MS, identified as “Black or African American” (U.S. Census Bureau, 2021). In 2020, Crawford, MS had a population of 423 people, 397 (93.9%) of whom identified as “Black or African American” (Data USA, n.d.).  62 Lastly, in 2020, Artesia had a population of 356 people, 311 (87.4%) of whom identified as “Black or African American” (Data USA, n.d.).  Data Collection Interviewer Training As a doctoral student in clinical psychology, the principal researcher had already received significant training in cultural competency, including a diversity class, an ethics class, and several diversity-focused didactic trainings prior to the inception of this study. In addition, an extensive literature review of how various aspects of culture could come into play in the current study was done before any data was collected. The principal investigator also received extensive training in active listening and rapport building through a clinical skills course, a behavioral therapies course, and multiple didactic trainings. Furthermore, the principal investigator had experience working with older African Americans gained through clinical experiences, including working as a senior companion to isolated older adults. Understandably, the same could not be said for the undergraduate and post-baccalaureate research assistants. Thus, before data collection began, the principal investigator provided literature, training videos, and direct training in research ethics, the cultural safety framework, cultural competency issues related to working with the target population, rapport building, interviewing skills, and active listening. Interviewer skills, including how to walk participants through the consent process and build rapport, were modeled by the principal investigator during lab meetings. Then, research assistant interviewer skills were observed both through watching video recordings of their practice interviews. The research assistant interviewer with greater availability was also able to shadow the principal investigator for an interview and be observed  63 for another prior to the first interview day at the community center. Constructive feedback was provided to both research assistant interviewers as needed. Informed Consent Informed consent was obtained using a consent form approved by the Mississippi State University Institutional Review Board (IRB). However, special care needed to be taken in obtaining informed consent from participants to ensure that they understand that the purpose of this process is to explain the risks and benefits of participation and to encourage their own self-determination. This is especially important because research working with African American participants has found evidence that placing too much emphasis on the initial consent document can heighten the perception that informed consent works like a legal waiver of liability for adverse outcomes, thus worsening distrust of research and medical care (Ard et al., 2005; Freimuth et al., 2001).  As Quinn and colleagues (2012) point out, informed consent protocols tend to treat the signing of the consent document as a necessary chore rather than as a process that will set the tone for ongoing communication between the researcher and the participant. Thus, obtaining informed consent from the target population was treated as a rapport-building conversation. First, the interviewers offered to read the consent document aloud to participants and did so when requested. Other participants preferred to read the document themselves. Regardless of participant preference about reading the consent document, the interviewers walked participants through the document, providing thorough explanations for each section and answering questions along the way. Care, clear communication, and the provision of information, all of which are components of patient-centered care, were utilized in explaining the consent document.  64 Emphasis was placed on the dynamic nature of informed consent and how it can be revoked at any time without loss of compensation (see below) for their time.  This in-depth explanation process was essential because the Flesch-Kincaid reading level of the consent document was 12th grade, largely due to the language explaining confidentiality procedures. This is significant because research has shown that just under half (47.6%) of 12th grade students that identify as “Black or African American” had below-basic 12th grade reading achievement (American Council on Education, 2020). Providing clear verbal descriptions of each component of the document and encouraging questions helped bridge this gap. The consent document was not signed until participants provided their verbal confirmation that they understood the document and felt comfortable with proceeding.  Following additional recommendations by Quinn and colleagues (2012) for improving the informed consent process, participants were provided with a copy of their informed consent document to take home. Furthermore, participants were told they could have a friend or family member with them during the informed consent process and the following interview if desired (Quinn et al., 2012). These trusted companions were also welcome to ask questions. Allowing participants to meet with researchers when a friend or family member was present was also in line with the multifaceted community-based approach to effective recruitment recommended by Lang and colleagues (2013) as well as previously described research regarding a patient-centered approach to communication (Mitchell et al., 2019). Per additional findings by Quinn et al. (2012) the interviewers provided the definitions of “confidential” and “anonymous,” to participants in case they were unfamiliar with those terms. All participants confirmed their understanding of the participation requirements and provided their informed consent to participate in the study.  65 After informed consent was provided for participation in the study, participants were also asked to provide consent for their interview to be audio recorded for later data transcription and analysis. Their informed consent for participation and their informed consent for audio recording were included in the same consent form, but their responses for each part were separate from one another. When obtaining informed consent for recording, the researchers explained that participant recordings would be handled in a Health Insurance Portability and Accountability Act (HIPAA) compliant manner, as described below under “Data Storage and Handling.”  There were two cases where participants provided consent for participating in the study but did not provide consent for their interview to be recorded. Both participants had been recruited through interview days at the community center, and the interviews were still conducted to respect the time the participants set aside to participate and spent waiting for their turn. Because the qualitative data taken from recordings of participant interviews was the focus of the current study and these participants had no audio for their qualitative responses, their remaining data (i.e., demographics, regional information, health information, and quantitative measure of health literacy) were excluded from the final analyses. One of these participants would have been excluded from the final analyses regardless because they did not meet the final age inclusion criterion of being 55 or older. Participant Compensation Participants were provided with a $20 gift card for Walmart as compensation for their time and contribution. Given that the total time commitment for each participant was approximately 15 to 45 minutes, all participants were compensated well above the federal minimum wage ($7.25 per hour) as is recommended. Gift cards were provided to all participants upon completion of their interview. The two participants who did not provide their consent to be  66 recorded were still compensated for their time and contribution. Two participants who participated via telephone were sent their Walmart cards via mail sent to the addresses they provided. COVID-19 Safety Guidelines Data was collected in June and July of 2022. During that time, the COVID-19 pandemic was still considered a public health crisis. Safety recommendations from the CDC encouraged mask use, social distancing, proper hand hygiene, and COVID-19 vaccination (CDC, 2021). All interviewers were vaccinated against COVID-19, per their unprompted self-disclosure. To further accommodate the CDC guidelines, interviewers were masked during all in-person interviews, and social distancing was maintained as much as possible. To respect personal agency, CDC guidelines were not enforced with participants, but masks were provided to any participants who requested them, and hand sanitizer was readily available for use. In addition, telephone interviews were offered for those who preferred to participate without any risk of exposure. Two participants requested this option. Semi-Structured Interviews Data was collected via semi-structured interviews, which is an interview method that combines the use of some structured questions with some unstructured exploration (Wilson, 2014). In other words, some questions were closed-ended (e.g., “yes” or “no” questions) and others were more open-ended to further probe and add nuance to the responses given to the closed-ended questions. Most interviews were conducted in person at the community center, in participants’ homes, or in the researchers’ office space. Three major reasons guided the decision to conduct the interviews in person. Firstly, extant research provided evidence that in-person  67 interviews tend to yield better rapport than those performed via phone (Vogl, 2013), chat (Meijer et al., 2021), or videocall (Iacono et al., 2016). In addition, in-person interviews allow interviewers to better observe nonverbal language and cues (Oltmann, 2016), which may be helpful when later reflecting on theme development. Lastly, in-person interviews eliminate the need for additional technology and thus the likelihood of technology failures that could impact data collection (Oltmann, 2016) and could provide additional barriers to participation for the target population. That said, while not preferred, two interviews were conducted via phone based on participant requests. For both in-person and telephone interviews, all non-qualitative questions were completed by the interviewer filling in participant responses while the participant verbally provided their answers. Demographic Information   Participants were asked to report demographic information, including age, gender, whether they were born in the United States or to United States citizens, race, ethnicity, relationship status, religious affiliation, highest achieved level of education, work status, gross annual income, and how many people are living with them full-time (see Appendix A for questionnaire questions). Their answers to these questions helped characterize the participant sample and add nuance to interpretations of qualitative analyses and their implications. Regional Information   Participants were asked to report their zip code, the size of the closest town within 10 miles of their home, how far away the store where they purchase their groceries (e.g., Kroger, Vowell’s Market Place, Walmart, etc.) was from where they live, and how far away the closest medical facility (e.g., hospital, emergency room, urgent care, etc.) was from where they live (see  68 Appendix A for questionnaire questions). Participant responses to these questions provided greater context for their degree of rurality, potential access barriers to health care, and whether they were living in a food desert. See Table 2 for regional and logistic participant characteristics.  General Health Information.  Participants were asked to rate their physical health on a 5-point Likert scale, where 1 is Poor, 2 is Fair, 3 is Average, 4 is Good, and 5 is Excellent. They were also asked to indicate whether they had any pre-existing physical or mental health diagnoses from a provided list. Participants were able to specify if they had a diagnosis that was not on the provided list. Lastly, participants were asked if they had health insurance at the time of their interview (see Appendix A for questionnaire questions). Their responses to these questions helped further characterize the sample and indicated if there were other potential access barriers to health care (i.e., lack of health insurance). See Table 3 for a summary of participant health characteristics.     69 Table 2  Participant Regional and Logistic Information Sample Characteristics n % M SD Size of largest town within 10 miles          Medium city (50,000-99,999 residents) 12 25.5        Small city (20,000-49,999 residents) 30 63.8        Rural (fewer than 5,000 residents) 5 10.6   Primary mode of transportation          By foot / walking 2 4.3        Driving myself 32 68.1        Getting a ride with someone else 13 27.7   Distance to nearest grocery store (miles)   12.16 6.30 Time to get to nearest grocery store (minutes)   18.05 11.89 Distance to nearest hospital (miles)   16.30 6.62 Time to get to nearest hospital (minutes)   23.59 16.67  Note. This table shows participant responses to the regional and logistic questions. Response options that received zero responses are not depicted. Participant zip code information is not described. Zip code data was only collected to confirm that participants met the nonmetropolitan definition of rurality (no urban center in the county had more than 50,000 people). While some participants reported that the nearest town within 10 miles had 50,000-99,000 residents, this was not correct. The numbers above reflect participants’ best guess.    70 Table 3  Participant Health Characteristics Sample Characteristics n % M SD Self-rated health          Poor 3 6.4        Fair 19 40.4        Average 8 17.0        Good  15 31.9        Excellent 2 4.3   Health diagnoses (endorsed)          Heart problems or clogged arteries 17 36.2        Cardiovascular disease and/or stroke 7 14.9        Osteoporosis and/or arthritis 28 59.6        Diabetes 22 46.8        Cancer 7 14.9        Autoimmune disease 1 2.1        Vision problems 14 29.8        Hearing problems 3 6.4        Asthma 5 10.6        Chronic obstructive pulmonary disease 1 2.1        Depression 2 4.3        Anxiety 3 6.4        Other physical health diagnosis 10 21.3        Other mental health diagnosis 1 2.1        None endorsed 4 8.5   Number of physical health diagnoses   2.66 1.74 Number of mental health diagnoses   0.13 0.54 Note. This table shows participant responses to the health questions. The most common number of physical health diagnoses was three, and the most common number of mental health diagnoses was zero. All participants reported having health insurance.  71 Qualitative Questions and Prompts.  To address the research questions, several qualitative questions were generated with the goal of prompting participants to reflect on their experiences with their health, health care providers, and the healthcare system as a whole. Following recommendations set forth by Creswell (2007), a combination of central questions aimed at getting a broad picture of the target phenomena as well as sub-questions designed to gain more specific information were developed. As described below, some questions were modified from other qualitative studies, some were inspired by quantitative measures of the target constructs, and others were developed without drawing from existing measures of the construct.  All qualitative questions went through a three-step review process. The study’s dissertation committee, Dr. Carolyn Adams-Price, Dr. Danielle Nadorff, Dr. Cliff McKinney, and Dr. Antonio Gardner first reviewed the instruments, before and during the initial dissertation proposal. The committee chair, Dr. Adams-Price, has conducted research using qualitative methodology (Adams-Price & Israel, 2022) and published research regarding original instrument development (Adams-Price et al., 2018). In the second step, the interviewers and an additional research assistant performed practice interviews with friends and family members, which they recorded for review. Following these practice interviews, the research team met to collaborate on modifications to the wording. Specifically, longer questions were broken down into smaller chunks, and the wording of questions was simplified in places where practice participants seemed to have a harder time understanding, as evidenced by apparent confusion or requests for the question to be repeated or reworded. Questionnaire questions received an additional review following the completion of the first two interviews for the study. The research team once again met to collaborate on modifications. Based on interviewer experiences during the first two  72 interviews, additional recommended prompts were included to gain additional information that could provide more information and nuance to the final qualitative data. In line with Creswell’s (2007) recommendations, questions were generally left open-ended. However, as appropriate, some question sets began with a close-ended question to prevent an underlying assumption that the experiences being asked about have been experienced by every participant. In these cases, the question set began with a close-ended question (e.g., “Have you ever had an experience…”) and was followed by an open-ended probing question for participants that responded in the affirmative (e.g., “What happened?”). The following sections detail which qualitative questions (QQ)s were developed to answer each research question. These questions have been numbered below to correspond with their numbers in the interview (see Appendix A for questionnaire questions). Positive vs Negative Experiences with Health Care Providers. The first set of qualitative questions was developed to answer this study’s first set of research questions aimed at understanding what characteristics make an experience with a health care provider either positive or negative for older rural African Americans. These questions began by prompting the participant to think of a positive or negative experience they had with a health care provider, and then followed up by asking what made the experience positive or negative. The wording for providing examples of health care providers was modified from the description used in the Health Care Relationship (HCR) Trust Scale (Bova et al., 2006). • QQ1: Think of a positive interaction you had with a health care provider (e.g., a doctor, nurse practitioner, physician assistant, or other primary care provider). What made this experience positive? If the participant is referring to a time where their MEDICAL treatment went well, ask “What about the health care provider made that interaction positive?  73 • QQ2: Think of a negative interaction you had with a health care provider (e.g., a doctor, nurse practitioner, physician assistant, or other primary care provider). What made this experience negative? If the participant is referring to a time where their medical treatment went poorly, ask “What about the health care provider made that interaction negative?” Discrimination by Health Care Providers. The second set of qualitative questions was developed to answer this study’s second set of research questions aimed at better understanding the discrimination that older rural African Americans experience in healthcare settings and how experiences with discrimination may impact their healthcare decisions. The first question from this set (QQ3) was developed through careful adaptation of the Discrimination in Medical Settings Scale (DMS; Peek et al., 2011) into a single qualitative question. This adaptation was first informed by an examination of the Everyday Discrimination Scale (EDS; Williams et al., 1997) from which the DMS was developed. Meanwhile, the remaining two questions (QQ4 and QQ5) in this set were developed with the intention of determining how discrimination in medical settings may impact treatment seeking and adherence. • QQ3: Have you ever experienced unfair or disrespectful treatment while receiving medical care based on one or more aspects of your background and/or identity (e.g., gender, age, race, ethnicity, skin color, body size, etc.)? Probe: If yes, what happened? How did you feel? / If participant says no, follow-up with “So, you feel that your health care providers practice fair and respectful treatment? • QQ4: Have you ever had an experience with a healthcare worker that discouraged you from seeking treatment later? Probe: If yes, how so? / What happened? / For example, has poor treatment by a health care provider prevented you from seeking treatment from them again? • QQ5: Has a health care provider’s treatment of you ever influenced your decision to follow their treatment recommendations? Probe: If yes, how so? / For example, has poor treatment by a health care provider prevented you from following their treatment recommendations?    74 Trust and Mistrust of the Healthcare System and Health Care Providers. The third set of questions was developed to answer my third set of research questions aimed at understanding whether older rural African Americans trust the healthcare system, whether they trust their primary health care providers, and how their trust or lack thereof may impact their healthcare decisions. This set of questions was not inspired by any previous qualitative study or quantitative measures of the construct. Instead, they were designed simply with the intention of asking, as broadly as possible, what factors contribute to older rural African Americans’ feelings of trust or mistrust and how this may impact treatment seeking and adherence. • QQ6: Do you trust the American healthcare system as a whole? Probe: What lead you to feel that way? • QQ7: Do you trust your primary health care provider? Probe: What lead you to feel that way? • QQ8: Have feelings of mistrust in the healthcare system or a specific health care provider ever influenced your decision about whether to get a specific medical procedure? Probe: Please describe that experience. • QQ9: Have feelings of mistrust in the healthcare system or a health care provider ever influenced your decision about whether to follow specific treatment recommendations? Probe: Please describe that experience. Health Literacy and Other Communication Barriers. The fourth set of questions was developed to answer my fourth set of research questions aimed at understanding what communication barriers arise in older rural African American’s experiences with health care providers, how they address these communications barriers, and how communication barriers may impact their healthcare decisions. The first and last questions in this set (QQ10 and QQ15) were developed by modifying questions from a mixed-methods study by D. James and colleagues (2015). Meanwhile, QQ11 was developed to get a qualitative measure of participant  75 health literacy, and QQ12 to QQ14 were developed to get a sense of the overall communication dynamic between participants and their health care providers. • QQ10: Where do you get information about health and medical treatments? Probe: If they indicate they get their information from another person, ask “Do you know where they get their information?” • QQ11: Have you ever received information from a health care provider that was unclear? Probe: What was it for? • QQ12: Would you feel comfortable telling a health care provider if you did not understand their directions? Probe: Why or why not? • QQ13: Have you ever received information or recommendations from a health care provider that you disagreed with? Probe: What was the information/recommendation? • QQ14: Would you feel comfortable telling a health care provider if you did not agree with their directions? Probe: Why or why not? • QQ15: What can health care providers do to better communicate with you about your health? If the participant says that their providers already communicate well, ask what their providers do to encourage clear communication? Addressing Other Barriers to Treatment. The fifth and final set of questions was developed to answer the fifth set of research questions aimed at understanding how older rural African Americans exercise their agency in addressing health issues and treatment barriers. This set of questions was not inspired by any previous qualitative study or quantitative measures of the construct. They were developed to get an idea of what factors are considered when older rural African Americans experience health issues. For example, do they want to seek medical assistance but cannot, or is seeking medical assistance a last resort? If they are not seeking medical assistance, what are they doing instead (e.g., home remedies, prayer, etc.)? • QQ16: When you experience a health issue, what steps do you normally take to help resolve the issue? Probe: If participant does not mention seeking professional care at all, ask “At what point do you feel like medical assistance is necessary?”  76 • QQ17: Have you ever had an experience where you were having a health issue but chose not to seek medical treatment? Probe: If yes, what got in the way? What did you do instead? Addressing the Potential Impact of COVID-19. A final qualitative question was developed to address any potential impact the COVID-19 pandemic may have had on participant responses. • QQ18: How has COVID-19 impacted your experiences with health care? Quantitative Measure of Health Literacy   The Rapid Estimate of Adult Literacy in Medicine Short Form (REALM-SF) is a seven-item word recognition test that can be used as a quick assessment of patient health literacy (Arozullah et al., 2007). The measure was designed to provide a faster alternative to the original, 66-item Rapid Estimate of Adult Literacy in Medicine (REALM; T. Davis et al., 1991) for use in research (Arozullah et al., 2007). The REALM-SF has been validated and field tested in a variety of research settings and has good agreement with the 66-item REALM (Arozullah et al., 2007). The instructions for the REALM-SF ask participants to read seven medical words out loud. If they could not provide a response within five seconds, they were asked to move on to the next word. In the current study, the REALM-SF was used to get an objective measure of health literacy. This measure was placed at the end of the interview to prevent performance on the scale from impacting responses to the qualitative questions. Unfortunately, because the measure requires participants to read words (see Appendix A), this measure could not be utilized with the two participants who participated via telephone.  Interviewer Race Effects and Code-Switching The principal investigator and two research assistants conducted interviews. Of these three interviewers, one was white (principal investigator) and two were African American  77 (research assistants). There is noteworthy evidence for interviewer race effects in research, especially when questions target race and racial attitudes (Krysan & Couper, 2003). Unfortunately, the best method of preventing this effect is to utilize computer-assisted self-interview (CASI; Liu & Wang, 2015), which is not the best approach for qualitative methods and would have created a significant barrier to participation for the target population (Oltmann, 2016). Therefore, while the best approach to interviews is via face-to-face meetings, as described above, the researchers must be aware of the effect. To accomplish this, participants were randomly assigned to interviewers during interview days at the community center. Phone interviews and home visits were more subject to interviewer availability and were mostly completed by the principal investigator (White interviewer). Of the 47 participants included in the final analyses, 27 had a White interviewer, and 20 had an African American interviewer. A close review of the interview transcripts and reflexive journal entries, as well as consultation between interviewers, did not indicate any significant differences in participant reports based on interviewer race, so no additional post hoc analyses were warranted. Thematic Analysis Since Braun and Clarke’s (2006) highly influential writing about how to conduct a thematic analysis in a deliberate and scientifically rigorous manner, other researchers have provided further recommendations on how to apply these standards by improving transparency for authors, reviewers, and readers alike (O’Brien et al., 2014). This line of work eventually culminated in the development of specific methods for establishing trustworthiness for qualitative projects that utilize thematic analysis (Nowell et al., 2017). The methods utilized in the current study are described below. Based on the design of the current study, some of these methods of establishing trustworthiness were not applicable and were thus not described. For  78 example, methods of establishing trustworthiness when working with multiple data collection modes were not described because all data was collected through a single mode (interviews). Phase 1: Get Familiar with the Data  The first phase of a thematic analysis involves becoming familiar with the data. In this study, gaining familiarity with the data began with conducting the interviews, noting any observations or reflections, transcribing the data, and doing a thorough read of each transcript.  Prolonged Engagement with the Data  After interviews were completed, transcripts were produced from the audio recordings of participants’ responses to the qualitative questions. These transcripts were initially produced by GradCoachTM (n.d.). GradCoach offers manual transcription by English-language specialists, and their services guarantee confidentiality of all transcripts through a non-disclosure agreement (NDA; GradCoach, n.d.). Braun and Clarke (2006) recommend reading every transcript at least once before even initiating coding. Thus, after these initial transcripts were generated, the principal investigator listened to all audio recordings while following along with the transcripts to ensure their accuracy and gain further familiarity with the data. In some places, the audio quality was poor or had significant background noise. The GradCoach transcripts were marked to indicate places where the recordings were inaudible. At times, these sections were able to be filled in by the principal investigator because the inaudibility was partially due to regional dialect.  At least one additional person reviewed every transcript. In other approaches like framework analysis (Gale et al., 2013), template analysis (King & Brooks, 2017), and matrix analysis (Groenland, 2014), additional reviewers and coders are included to check inter-rater  79 reliability and generate a final codebook. However, Braun and Clarke (2013), citing Yardley (2008), argue that coding agreement only shows that coders have received similar training, not that the underlying phenomena being coded and described are “reliable” or “accurate.” Their reflexive approach to thematic analysis instead aims for a more flexible and organic approach to coding and subsequent theme generation (Braun & Clarke, 2013). While coding in this approach can be undertaken by a single individual, inclusion of other researchers can be used as a collaborative process rather than one that aims for agreement (Braun & Clarke, 2013). This approach was taken to create greater dialogue with the data and continue to incorporate important aspects of the cultural safety framework, as described below. Document Theoretical and Reflective Thoughts  After the completion of each interview, the interviewer wrote a quick reflection, including any thoughts or observations they had about participants’ responses, affect, speech, or behavior. These reflexive journal entries are utilized to help researchers recognize the role they play in the analysis process (Creswell, 2007). They also helped interviewers engage in cultural humility, a key feature of the cultural safety framework used to frame the current study (Kumagai & Lypson, 2009). Thus, the reflexive journals completed after interviews encouraged self-reflection, examining biases, and acknowledging oneself as always in the process of learning about other people’s experiences. See Appendix B for records of all 64 reflexive journal summaries completed by the interviewers. Document Thoughts About Potential Codes and Themes  As a part of their reflection process, interviewers also documented any thoughts they had regarding potential codes or underlying themes that stood out to them (see Appendix B).  80 Store Raw Data in Well-Organized Archives  Raw data from the semi-structured interviews (paper records) were entered into a password-protected Excel file, as recommended by Nowell et al. (2017), that was then stored on OneDrive. OneDrive was chosen for its extensive layers of encryption for both in-transit and at-rest data (Microsoft, 2023). Paper records of raw data were kept in a locked filing cabinet within a locked lab space (Room 123) in Magruder Hall at Mississippi State University. The safety measures protected participant information and allowed for clear, easy-to-navigate organization of information.  Keep Records of All Research Notes, Transcripts, and Reflexive Journals  OneDrive was also used to keep track of all research notes, data transcripts, and reflexive journal entries. Team progress in collecting and coding data was also tracked in Excel files saved to OneDrive. This helped organize progress towards completing each part of the study and allowed for easy reference as needed.  Phase 2: Generate Initial Codes The second phase began as soon as the research team had completed interviews, all reflexive journal entries had been recorded, and the research team, especially those who would be involved in coding, had familiarized themselves with the data (Braun & Clarke, 2006).  Peer Debriefing  Peer debriefings were accomplished through lab meetings and email correspondence between the principal investigator and research assistants. These debriefings and the related notes helped encourage further engagement with the data and later supported the flexible and  81 organic approach to coding and subsequent theme generation described by Braun and Clarke (2013). Researcher Triangulation  In this context, triangulation refers to the process by which two or more researchers work towards decisions related to code generation. A total of five researchers were involved in the triangulation process. This included the principal investigator, two research assistants, and two doctoral-level researchers that volunteered to assist in coding. First, each coder was assigned transcripts. The principal investigator coded all transcripts, while the other four coders were assigned 22 or fewer. These four coders provided initial codes for their assigned transcripts in Word documents via parenthetical notes or by adding comments, while the principal investigator entered initial codes into the NVivo qualitative analysis software (Version 14; 2023). Triangulation was then accomplished through peer debriefings, where the coding process and resulting codes were discussed. NVivo was utilized for final coding and analysis because of its ability to organize data and make clear connections between the raw data (audio and transcripts), codes, and subsequent themes (Dhakal, 2022). In addition, the program can be used to query data to identify patterns that might otherwise be missed and allow for clear visualization of the data (Dhakal, 2022).  Reflexive Journaling  Reflexive journaling for both interviews (see Appendix B) and peer debriefings in the form of research meeting notes (see Appendix C) helped the research team keep track of the progression of their thoughts and ideas as they continued to engage with the data and develop codes.  82 Using a Coding Framework  Because this project utilizes Braun and Clarke’s (2006) reflexive approach to thematic analysis rather than a codebook approach, there was no coding framework in the traditional sense. However, because the current study was framed using the cultural safety framework and utilized a contextualist model of analysis, a balance of inductive and deductive approaches was used during coding. The coders observed what came up in the data using participants’ own words (bottom-up/inductive) and tied these codes to the cultural safety framework and existing literature where there were meaningful connections (top-down/deductive).  Audit Trail of Code Generation  Reflexive journaling also served as an audit trail for how impressions of the data emerged, and codes were generated (Braun & Clarke, 2006). This process is used to add further credibility to qualitative studies because it allows readers and reviewers alike to see the whole progression of a study from start to finish, rather than just a final product that may have been developed through less credible means. This audit trail for code generation is reflected in the reflexive journal entries following the interviews (see Appendix B) and peer debriefings (see Appendix C). These notes show the clear progression from initial impressions of the data immediately following data collection through the determination of final codes that informed later theme generation. Documentation of all Team Meeting and Peer Debriefings.  Similarly, documentation of other team meetings and peer debriefings was added to the audit trail to help apply a critical lens to theme generation and add to the study’s trustworthiness.  83 Phase 3: Search for Themes  This phase began after all the data had been transcribed, coded, and organized in NVivo. Researcher Triangulation  During this phase, members of the research team worked together to generate themes from the coded data. Following Braun and Clarke’s (2006) recommendation, themes did not necessarily have to be quantifiable. Instead, the focus was on generating themes that reflected important answers to the study’s research questions. These initial themes were generated largely through review of reflexive journal entries and familiarization with the data from the interview process, reviewing audio, and coding.  Diagraming Proposed Theme Connections  After these themes were generated, the principal investigator began to diagram how these themes were potentially connected. Once potential theme connections were diagramed, they were discussed with a research assistant. In some cases, additional connections were generated, and other connections were simplified. These potential theme diagrams were then reviewed by the project chair, Dr. Adams-Price.  Keep Detailed Notes  Once again, documentation and transparency are essential for establishing trustworthiness in a thematic analysis (Nowell et al., 2017; O’Brien et al., 2014). Detailed notes regarding theme development and proposed connections and hierarchies were kept (see Appendix C).   84 Phase 4: Reviewing Themes  This phase began after initial thematic maps had been generated and agreed upon following review by a research assistant and the project chair.  Researcher Triangulation  Researcher triangulation at this phase was dedicated to systematic review of the coded data extracts, generating more nuanced themes and considering whether they form a coherent pattern. In this phase, the final themes that were generated through this process were much more quantifiable based on number of theme instances rather than broader impressions of the data. This process was largely accomplished by creating coding hierarchies and conducting data queries in NVivo. Theme and Subtheme Vetting.  Finally, the validity of each individual theme was considered in terms of whether the individual theme was reflective of the meanings found within the whole data set (Braun & Clarke, 2006). During this process, it became apparent that some themes lack significant data to support them, or the data for them was too varied (Braun & Clarke, 2006). Good themes were “specific enough to be discrete and broad enough to capture a set of ideas contained in numerous text segments” (p. 9; Nowell et al., 2017). In some cases, themes were combined to create more efficient and impactful descriptions of the data (see Appendix C). Test for Referential Adequacy.  After completing the above procedures, the researchers were able to demonstrate how each theme was obtained from the data. Thus, to guarantee that all the final themes are grounded in the data, referential adequacy will be achieved by examining the raw data and comparing it to  85 the developed themes (Lincoln & Guba, 1985). This process was accomplished using NVivo, where raw data, codes, and themes are all easy to reference in relation to one another.  Phase 5: Defining and Naming Themes During this phase, the research team decided what aspect of the data each theme described and then identified what was of interest about that theme and why (Braun & Clarke, 2006). Researcher Triangulation  Researcher triangulation in this phase served as a layer of checks to facilitate self-reflection and minimizing bias, consistent with the core principles of the cultural safety framework and incorporating the research team’s perspectives in generating theme names and definitions that balanced efficiency with the nuance found in the data. Peer Debriefing  As in the previous phases, peer debriefing was utilized as a method of coordinating researcher triangulation. For the purposes of theme naming and definitions, reflexive journal entries were reviewed, and peer debriefing with a research assistant  Coming to a Consensus  In this phase, the main goal was to come to a final consensus. By the end of this phase, the research team came to a consensus about each theme’s name and meaning.    86 Documentation of Team Meetings and Theme Naming  As with previous phases of the thematic analysis, documentation played an essential role in establishing an audit trail that followed a clear line of logic and showed the progression of theme development over the course of the project (see Appendix C).  Phase 6: Producing the Report  Finally, once all the themes were named and clearly defined, the final report was generated. For the purposes of this project, this phase refers to the process of writing up the results of the thematic analysis.  Peer Debriefing  One final peer debriefing was used to confirm that this study followed Nowell and colleague’s (2017) guidelines for a strong argument. Research assistants provided their thoughts and feedback which were incorporated into the final report. At this phase, peer debriefing also included review and feedback for the final report provided by dissertation chair, Dr. Adams-Price. Feedback was incorporated into a strong, data-driven final report. Thick Descriptions of Context  Referring to the reflexive journals and interview transcripts helped contextualize the results. King (2004) reported that the inclusion of direct quotes from participants can be used as demonstrations of specific themes and provide further context for each theme. To provide context and illustrate the referential adequacy of the current study’s findings, direct quotes using participants’ own words are provided in relation to each significant theme described in the results section below.  87 Description of the Audit Trail  This part of the report compiles all the notes for meetings and the theme development process to provide evidence that a scientifically rigorous method was applied during all steps of the thematic analysis. For the purposes of brevity in the results section below, this audit trail was illustrated in the reflexive journal entries (Appendix B) as well as the coding generation, theme generation, and diagramming notes (Appendix C). Report Reasons for Theoretical, Methodological, and Analytical Choices  This is the part of the report where researchers make a clear and logical argument, accounting for the themes within their data. For the current study, this process was described in the results section below.    88 CHAPTER III RESULTS Generating Themes While each participant had their own unique relationship with their health and healthcare experiences, several common themes were identified. As previously described, theme development was guided by a balance of inductive and deductive approaches. This means that themes were developed based on a combination of the expressed experiences of participants and the existing body of literature regarding health and healthcare disparities described in the introduction. Taking this approach to theme development was motivated by a desire to emphasize the perspective of the participants while recognizing systemic factors that exist in healthcare settings and other institutions, consistent with the cultural safety framework that framed this study and a contextualist model of analysis.  When developing themes, the number of theme instances needed for a theme to reach significance was adjusted for each individual research question. This was done because the final number of participants included in the final analyses exceeded the a priori estimate of sample size needed to have appropriate power to capture themes with a 30% theme instance using five theme instances to classify a theme. In addition, some questions do not have responses for every participant due to factors including participants declining to answer, participants failing to respond to the question (e.g., tangential responses), the audio being inaudible such that no transcript was available for that response, or a failure to probe a response. General estimates of  89 appropriate numbers of theme instances were determined by using the R coding provided by Fugard and Potts (2015): The following R (R Core Team, 2013) functions computes the power achieved for a given sample size (SampSize), theme prevalence (ThemePrevalence), and number of instances desired (NumInstances). To run the code, simply copy and paste it into the ‘R Console’ window. powerForQual = function(SampSize, ThemePrevalence, NumInstances) {pnbinom(SampSize-NumInstances, size = NumInstances, prob = ThemePrevalence)} To compute the power for N = 30, a theme prevalence of 0.1, and to find 2 instances, run: powerForQual(30, 0.1, 2) This gives the answer 0.816305, i.e. about 82% power (p. 683). With a few notable exceptions specified below, a cutoff of five theme instances was used as a minimum to determine a given theme. In cases where data is available for all 47 participants, this would yield 85% power to identify a theme that has a prevalence of 15%. Theme instances are reported below for all themes to indicate the relative significance of each theme within the broader picture of the data.  Positive vs Negative Healthcare Experiences Themes were developed to address the first set of research questions aimed at understanding how older rural African Americans characterize positive and negative experiences with their health care providers. To accomplish this, participants were asked to describe a positive and negative experience they had with their providers.  90 Positive Experiences  Nearly all the participants (42 out of 47) reported having a positive experience with a health care provider. The remaining five included one individual who reported he had not been to a primary care provider in many years and could not remember a positive experience, and the other four gave responses that suggested they may have been referring more to the outcome of the treatment being positive for their health. Examination of the responses of these 42 participants revealed four major themes. See Figure 1 for a visual representation of these findings. Figure 1  Final Themes for Positive Experiences  Note. This figure shows the final thematic map for RQ1.1: How do older rural African Americans characterize a positive experience with health care providers?  91 Pleasant  Of the 42 participants who described having a positive experience with a health care provider, 32 highlighted that their provider was pleasant to interact with in some way and described their provider using adjectives like nice, kind, friendly, cheerful, patient, respectful, and providing good service. For example, one 62-year-old female participant stated, “They talk to me real nice. They have good service.” Another participant, a 65-year-old man, reported that his provider “smiled, and they were bubbly and cheerful.” Other participants emphasized that the way their provider interacted with them made them feel like their provider cared about them. For example, a 63-year-old female participant stated her experience was positive because her provider was “someone that seems like they care about you instead of just like a number… That was really something good there.” Good Communication Skills  A substantial 22 participants reported that one of the aspects that made their experience with a health care provider positive was that their provider had good communication skills. Some participants emphasized the amount and quality of information their provider gave them. For example, a 67-year-old male participant stated that his kidney doctor “was very good with details, and he was open. I could always talk with him, and he was good at giving me good information.” Another participant, a 57-year-old woman, highlighted her doctor’s ability to handle a serious conversation following her diagnosis with breast cancer, stating, “He sat me down and talked to me. First, he told me the good news, bad news, and what all I had to do and what I could go through and all that. He handled it very well.”    92 Good Clinical Skills  Another theme that was reported by 16 participants was that their provider had good clinical skills as a health care provider. This theme included qualities like providing thorough examinations and testing, sending patients to the correct specialist when needed, providing the correct diagnosis, or prescribing the correct medication to improve a participant’s health. For example, a 63-year-old male participant commented on his provider’s thoroughness, commenting that “she do what she has to do, checks everything.” Another participant, a 56-year-old man, commented that even though he attributed still being alive to Jesus Christ, he felt his doctors did excellent work with him, stating: I mean my doctor was great. I ain’t going to say they kept me alive. I know Christ kept me alive and gave them the knowledge to do that to keep me alive. And I have got some good doctors, period. And they did everything they could to keep me alive and make sure that I had the right medicines for my heart. I take like twelve a day, twelve pills a day for my heart. And they are excellent, they are great, good doctors. Readily Accessible  Five participants noted that their experience with their health care provider was positive due to their providers being readily accessible. For example, a 65-year-old female participant highlighted that her provider was always available by phone, stating, “[…] when I called her then she was available to talk to.” Another participant, a 67-year-old man, highlighted the speed with which he was able to get an appointment with his provider, stating, “[…] he was always pretty prompt with my appointments.”  93 Negative Experiences Of the 47 participants included in the final analyses, only 20 participants reported having a negative experience with a health care provider that they could recall. All other participants denied having had a negative interaction with a health care provider. Examination of the responses of the 20 participants who reported having a negative experience revealed four major themes. Perhaps unsurprisingly, the characteristics of a negative experience with a health care provider were essentially opposites of the characteristics of a positive experience. See Figure 2 for a visual representation of these findings. Figure 2  Final Themes for Negative Experiences  Note. This figure shows the final thematic map for RQ1.2: How do older rural African Americans characterize a negative experience with health care providers?  94 Unpleasant  Nine of the 20 participants who endorsed having a negative experience with a health care provider described their provider as being unpleasant to interact with in some way. Rudeness, arrogance, and a lack of care for patients were the most common descriptions participants gave for these providers. For example, a 65-year-old male participant stated, “It seemed to me that they did not take enough interest in my problems or the issues I was having.” Another participant, a 71-year-old man, reported that he switched providers after a negative interaction with one provider, stating, “Before this one, I went to another one, and she wasn't too friendly […] and she cared about money more than she did about patients. And I didn't like that, so I switched over.” Poor Clinical Skills  Eight participants commented that their provider’s poor clinical skills and the issues that followed were what made their interaction with their provider negative. For example, a 59-year-old male participant reported that it took him nearly two weeks to recover from getting tooth extractions because the provider did all of them at once instead of half during one appointment and half at another. Commenting on the long recovery process with significant swelling, he stated, “She was supposed to do half of them and let my gums heal. Then she was supposed to take the other half out and let that heal […] but she took them all out. I mean, I looked out of shape!” Another participant, a 65-year-old woman, reported having similar issues related to surgery. She reported that when she was getting gallstones removed, the surgeon nicked her small intestines, which could have had very serious consequences.     95 Poor Communication Skills  Seven participants reported that poor communication made their experience with a health care provider negative, with an emphasis placed on feeling dismissed or feeling like their health care provider was not listening to them. Two participants reported that they felt their doctors were not listening to them when they reported having pain. For example, a 65-year-old female participant stated, “I told them I kept telling you that it was hurting, but you would not send me to do a CAT scan. And they just did the procedure in September. And they kept telling me everything looks fine, but I have been having pain ever since I had that procedure, and nobody will listen to me.” Meanwhile, a 71-year-old man noted that he felt dismissed because of how quick the appointment was without really receiving any answers. He commented, “[…] they had dismissed me. They said their time was up or something.” Delayed Treatment  A theme endorsed by six participants described anything that resulted in participants experiencing a delay in care. This included instances where they were not able to receive an appointment for several weeks, as described by a 71-year-old female participant who commented, “I had called my pulmonary doctor and I needed to see him, and they kept telling me that you know I needed to wait until the next month, but I knew I needed to see them immediately.” Another female participant, age 65, reported an instance where she was waiting in a treatment room for a gynecology appointment and the provider never arrived, stating:  See I had a hysterectomy, and I was seeing a lady doctor there […] she sent me to one of the male doctors at the women’s clinic. So, I went there, and I checked in, I got in a room, took off all my clothes, and she told me to sit on the table and wait until the doctor come in. It was a whole hour, and he never even came in […] And so, after that hour I  96 just got up, put my clothes on and walked out walked past the reception, past the nurses and nobody said nothing. Adding Nuance: Behavior Over Costs  Surprisingly, only one participant reported anything related to the monetary costs of healthcare, which was not sufficient to warrant creating an additional theme, nor did it fit in with the established themes. However, another 65-year-old female participant highlighted an ironic experience with her health care provider, where she was essentially punished by her doctor’s office for being unwell. She commented:  I made an appointment to go to the doctor and I wasn’t able to drive that day they told me that I had to pay twenty-five dollars to reschedule. I was weak because I have high blood pressure and when I have bad headaches I don't drive.  This suggests that, at least in the current sample, negative experiences were characterized more by how and when they were treated than by costs. It is worth mentioning that all 47 participants had some form of health insurance at the time of their interviews. Discrimination Themes were developed to address the second set of research questions aimed at understanding the discrimination that older rural African Americans experience in healthcare settings and how experiences with discrimination may impact their healthcare decisions. To accomplish this, participants were asked if they ever felt like they had experienced unfair or disrespectful treatment based on one or more aspects of their background or identity (e.g., race, ethnicity, gender, age, etc.). Then participants were asked if a provider’s treatment of them ever  97 influenced their decisions related to seeking treatment or following specific treatment recommendations.  Types of Discrimination Experienced Of the 47 participants included in the final analysis, only five participants reported ever experiencing any kind of discrimination from a health care provider. Because so few participants reported this, all forms of discrimination described will be reported here to help add nuance to the finding. Furthermore, while one instance of a given form of discrimination may sound insignificant, that still accounts for more than 2% of the sample. When we broaden that out to account for the six reported instances of different forms of discrimination, that means that almost 11% of the sample experienced discrimination. When that percentage is applied to the target population, that suddenly accounts for a large number of older rural African Americans experiencing at least one form of discrimination. Given the significant effects discrimination can have on health, as described in the introduction, there is a contextual importance to these numbers, despite their smaller frequency. Four themes related to different forms of discrimination were reported by participants, and an additional theme characterized participants’ awareness that discrimination in healthcare settings can occur, even if they have not personally experienced it. See Figure 3 for a visual representation of these findings.    98 Figure 3  Final Themes for Forms of Discrimination  Note. This figure shows the final thematic map for RQ2.1: How do older rural African Americans experience discrimination? Due to the limited number of instances of participants endorsing experiencing discrimination and the significant impact that discrimination can have on health, only one instance of a theme was needed for it to be considered significant. In this figure, the floating concept represents a theme with sufficient support, but it does not directly describe a form of discrimination and thus is not connected to the core of this research question. Instead, this theme provides nuance to the overall picture of the data. Racism  Two participants reported an instance where they felt they were being treated poorly by a health care provider because of their race. For example, a 67-year-old female participant reported an experience of disrespectful treatment when she was a younger woman that she felt may have  99 been due to her race. Another participant, a 71-year-old man, reported he had a more recent experience where he thought the providers may have made assumptions about him. He commented, “Going back to that one, I think they thought I didn’t have no money to pay. They were kind of rude, you know?” When asked what he felt they based these assumptions on, he reported that it may have been due to his race. Sexism  One participant, a 65-year-old woman, reported an experience where she felt like she was discriminated against based on her sex, partially because of the difference in her treatment experience with her regular female health care provider compared to the male provider she was referred to for additional assessment. She commented, “I think it was sexist because I was sitting there waiting for this male doctor. And the lady doctor that I was seeing, she was not like that. She saw me right away. There was no time before she came in. This doctor never did come in.” Another important piece of context in this case was that this poor treatment took place at a women’s clinic. This could have multiple implications. It may suggest that many women who received their care from that provider might have had similar experiences and either did not report their experience or their complaints were dismissed, possibly due to institutional sexism. It is also possible that this participant experienced misogynoir, a form of discrimination involving misogyny specifically directed at Black women (Blackburn Center, 2020). Ageism One participant, a 71-year-old woman, reported an instance of poor treatment that she attributed to her age. She reported that after multiple visits to the doctor regarding a specific medical complaint that continued to be unresolved, her provider told her the cause may be  100 psychological. This participant then commented, “And I know that [this treatment] comes with being older, so.” Fatphobia  A 61-year-old female participant reported that she had an unpleasant experience with a provider who made a joke about her obesity. She commented, “To be told I am obese in a like joking way—your health is important, and if you feel like I am obese, it’s nothing to joke about it. It wasn't funny.” She reported that she was aware that she was overweight and wanted to get help to address the issue and any other issues with her health, but the comment left her feeling like her health was the punchline. Acknowledged but Not Personally Experienced  Lastly, two participants reported that they were aware that discrimination can occur in healthcare settings, but they had not experienced it firsthand. This theme had sufficient support but did not describe a specific form of discrimination. Therefore, this theme did not provide a direct answer to the research question. However, this theme provided support that even though most participants have not had personal experience, discrimination in a healthcare setting may have happened to someone they know and is something that could happen to them in the future. As one 73-year-old female participant described, “Well, with me being Black I would say I have heard that White doctors will mistreat people” but when asked if she had experienced this firsthand, she stated, “[…] anything is possible, but not yet.” Adding Nuance: Uncertainty About Discrimination  In all these reported forms of discrimination, most of the participants indicated a level of uncertainty about the source of their treatment using language like “I think,” “may have” or “in  101 part.” In fact, both the woman who reported the experience of being on the receiving end of a fatphobic joke and the woman who reported assumptions being made about her based on her age initially reported that they had not experienced any discrimination. The participant who experienced a fatphobic joke from a doctor even commented that this provider “jokes about everything.” The participant who believed she experienced ageism commented about her experience as though it were an expected part of getting older. This speaks somewhat to the insidious nature of modern, often implicit, discrimination. People cannot necessarily say with certainty if the experience they just had was the product of discrimination or not. Impact of Discrimination on Treatment Seeking While multiple participants reported experiences where a provider’s treatment of them impacted whether they sought treatment in the future, this was partially due to the wording of the interview question, which did not specifically ask if discrimination impacted treatment seeking. Instead, the qualitative question asked participants, “Have you ever had an experience with a health care provider that discouraged you from seeking treatment later?” When looking at the responses of the five participants who reported discrimination, all five of them reported that they never saw that provider again. Both participants who reported racial discrimination reported that the provider they had that experience with was not their normal provider, and they did not receive care from those providers again. The other three participants reported that they chose not to return to that provider following their experiences. Impact on Treatment Adherence Like what occurred with the question regarding treatment seeking, the interview question related to treatment adherence did not specify if discrimination had impacted treatment  102 adherence. Instead, the qualitative question asked participants, “Has a health care provider’s treatment of you ever influenced your decision to follow their treatment recommendations?” As such, many participant responses did not address the related research question. In fact, eight participants reported that positive experiences with their providers encouraged them to better adhere to their provider’s treatment recommendations. When looking at the responses of the five participants who reported experiences of discrimination, they did not report an instance of discrimination impacting whether they adhered to a provider’s treatment recommendations, which made sense given that they reported that they never saw the providers that discriminated against them after those experiences. There is some evidence that discrimination could potentially impact treatment adherence based on the number of people who reported that a non-discrimination-based negative experience prevented them from adhering to a provider’s treatment recommendations. However, there was not enough evidence to conclusively say that discrimination impacted treatment adherence in the current study.  Trust vs Mistrust Themes were developed to address the third set of research questions aimed at understanding whether older rural African Americans trust the healthcare system, whether they trust their primary health care providers, and how their trust or lack thereof may impact their healthcare decisions. To accomplish this, participants were asked whether they trusted the healthcare system and whether they trusted their primary health care provider. Regardless of their responses, participants were asked what contributed to their feelings of trust or mistrust. Lastly, participants were asked to describe whether feelings of mistrust have ever impacted them getting a specific medical procedure done or following specific treatment recommendations.   103 The Healthcare System  More than half of all participants (29) reported that they trusted the healthcare system. Eight additional participants reported partial trust in the healthcare system, while nine participants reported that they did not trust the healthcare system. To address these diverse perspectives, the analyses were focused on understanding participants’ reasons for trusting the healthcare system and their reasons for not trusting the healthcare system. The responses of participants who reported partial trust were divided into what they reported they trusted about the healthcare system and what they reported they did not trust about the healthcare system.  Trust in the Healthcare System  First, an examination of reasons for trusting the healthcare system was conducted. This examination revealed three major themes. See Figure 4 for a visual representation of these findings. Trust Based on Positive Experiences with Primary Care Providers. Seventeen participants attributed their trust in the healthcare system to their own positive experiences. For example, a 61-year-old male participant who reported having survived a heart attack reported, “I trust them because I think that I would not be here [without them]. They're here to save you, you know?” Some participants overtly connected their trust in the healthcare system to positive experiences with specific providers. As one 70-year-old male participant described, “Yeah [I trust the system]. There are a few of them that will rip you off[...] The one I am with right now is very nice and helped me out a whole lot.” This participant clearly indicated that even though there were some health care providers that may only be interested in money, his own provider has been a source of positive experiences, so the system is worth trusting. Other participants reported that they trusted the healthcare system because they did not have any negative  104 experiences that they could remember. Another male participant, age 67, stated, “I haven't had any problems with my providers; I can say that pretty much. If I had to call, they pretty much explain and pretty much get things done.” Figure 4  Final Themes for Reasons to Trust the Healthcare System  Note. This figure shows one final thematic map for RQ3.1: Do older rural African Americans trust the healthcare system? This map includes participants’ reported reasons for trusting the healthcare system. Belief that the System is Good. Nine participants endorsed believing that the U.S. healthcare system is good. The two most frequently endorsed ideas within this theme were the belief that the system is fair and the belief that the U.S. healthcare system is of high quality. For example, one participant, a 67-year-old woman, expressed that the U.S. healthcare system is excellent to the point that people from other countries come here seeking treatment. She stated,  105 “I think there are a lot of people, for instance, from Canada that come here to get healthcare. There are people from other countries that come here.” Meanwhile, a 70-year-old male participant who endorsed partial trust in the healthcare system reported that the thing he trusts about the healthcare system is that he knows he will not be rejected from receiving care. He stated, “Well, I can bet on it; if I get sick and need to go to a hospital, they are going to take care of me. But some of the healthcare, it is a real problem, and some of it is straight up.” This further lends itself to the idea of fairness, in which one can expect care if they have a health issue, despite other aspects of the system perhaps not being ideal. Belief in Own Ability to Navigate It. Five participants indicated that their trust in the healthcare system was because they trusted their own abilities to navigate the system successfully. This included participants reporting confidence in seeking out a second opinion, doing their own research, or their ability to deal with the less positive aspects of the system and appreciate its good qualities. One 70-year-old female participant summarized this attitude of taking the good with the bad and trusting yourself to carry on when she stated, “Yeah, I trust them a little bit. That’s just life. That’s the way it is […] That’s the way I am.”  Mistrust in the Healthcare System  Then, an examination of reasons for having mistrust in the healthcare system was conducted. Due to the limited number of instances (nine) of participants endorsing not trusting the healthcare system, only two instances of a theme were needed for it to be considered significant. This examination revealed three major themes. See Figure 5 for a visual representation of these findings.    106 Figure 5  Final Themes for Reasons to Not Trust the Healthcare System  Note. This figure shows another final thematic map for RQ3.1: Do older rural African Americans trust the healthcare system? This map includes participants’ reported reasons for not trusting the healthcare system. Due to the limited number of instances of participants endorsing not trusting the healthcare system, only two instances of a theme were needed for it to be considered significant. Financial Reasons. Five participants endorsed that their lack of trust in the healthcare system was due to financial concerns, like medical costs, not understanding or trusting health insurance to cover what is needed, and the belief that the system is more concerned with making money than with helping people. For example, a 71-year-old male participant described a sharp difference in how patients are treated when they have insurance compared to when they do not. He reported, “I have seen them turn people down that didn’t have insurance, you know, or send them home sick […] didn't get them right. So, if you've got insurance or if you've got money, then you get the best, but if you don't, you [will not receive that same level of care].” Similarly, a  107 76-year-old female participant expressed that she thought people deserved more benefits, highlighting that it did not make sense that people who have been “paying into the system” for many years do not gain any benefits from their contribution. She stated, “I don't think we should have a whole lot of expenses […] if a doctor prescribes you a certain medicine, I don’t think it should be more expensive since you have been paying into the system.” Both participants emphasized the somewhat unbalanced nature of how healthcare coverage works in the U.S.  Due to Negative Experiences. Similar to how positive experiences were cited as a reason to trust the healthcare system, four participants attributed their mistrust in the healthcare system to having had past negative experiences with healthcare. For example, a 57-year-old female participant stated, “Some might be. You go to some people they are real nice and some are [not],” before recounting a negative experience she had with a health care provider. Lack of Trust Because Information is Mixed. Lastly, two participants attributed their lack of trust in the healthcare system to feeling like it is hard to know who to trust because information seems to be inconsistent (e.g., COVID safety recommendations). One participant, a 73-year-old woman, indicated that confusion was further fueled by the media. She stated, “[…] you hear about false information [from media], and then you do not know who to trust or who not to trust.” Primary Care Providers  All but two participants reported that they trusted their primary care provider. Of the two remaining participants, one reported that he had difficulty trusting people in general, and the other reported that he mostly trusted his provider but did not always feel listened to. Analysis of the reasons why people reported trusting their health care providers resulted in two frequently endorsed themes and one theme that was subthreshold for significance but provided additional  108 insight into participants’ perspectives regarding their providers. See Figure 6 for a visual representation of these findings. Figure 6  Final Themes for Reasons for Trust in Primary Health Care Provider  Note. This figure shows the final thematic map for RQ3.2: Do older rural African Americans trust their primary health care providers? The “Have to Trust” theme was just below the threshold of five instances needed for this map but was worth noting because of the insight it provided into less tangible reasons for trusting health care providers. It is depicted as floating to indicate that it was not at the level of significance. Based on Positive Experiences  Over half of participants (29) reported that they trusted their primary health care provider because of previous positive experiences or positive qualities they associate with that provider and their relationship with that provider. Of these 29 participants, 10 emphasized that trust was based on their providers expressing care and investment in their health. For example, a 65-year-old female participant stated, “[my provider] acted like she cared about my health. That is why— 109 that is the main thing, was that she cared about my health.” In addition, three participants reported that they had known their provider for a long time. One participant, a 59-year-old man, stated, “I mean, I have been with them for several years, so if there is anything wrong, I can call them, and I can always get him on the phone. If I can’t, I can leave my number and they’ll give me a call back.” This participant’s response also indicated that consistency and reliability are important. It is not surprising that someone would report that they trust their provider, when that provider has not only been reliable and consistent but has also been that way for many years.  Good Communication and Follow-Up  Over one-third of participants (17) reported that trust was earned through clear communication during appointments and during follow-up care, including explanations of diagnoses, medications, clear treatment recommendations, etc. This prolonged investment in patient care, even outside of scheduled appointments, resonated with several participants. For example, when asked why he trusts his primary health care provider, a 71-year-old male participant reported, “Because he makes sure that I’m doing the things that I need to be doing. If I’m not, he will tell me what I need do, what I need to change and what I need to take, what I don’t need to take, and he makes sure I'm doing the right thing.” Experiences like these not only demonstrate clear communication but can also improve patient outcomes by making sure that the patient continues to correctly follow treatment recommendations.  Have to Trust  Four participants endorsed this (subthreshold) theme. This idea of “you have to trust” your providers was often focused on how, even if there are no specific reasons for trusting your providers, when you need care, you must see that provider. A 56-year-old male participant  110 expressed that this becomes progressively truer with age. He stated, “I have to trust them. I ain’t got no choice. You’ve got to go to the doctor. You’ve got to get yourself looked at; check anything you are doing with your body. Years can go by, and nothing happens, but the older you get, it’s going to hit you.” Impact of Mistrust on Treatment Seeking  Only seven participants reported an experience where mistrust impacted later treatment-seeking. Due to the limited number of instances of participants endorsing some experience related to how mistrust impacts whether they seek treatment, only two instances of a theme were needed for it to be considered significant. This examination revealed three major themes. See Figure 7 for a visual representation of these findings.  Related to Provider  Two participants reported that a negative experience with a provider led to a lack of trust, which led to them not seeking treatment from that provider again in the future. In fact, for one 65-year-old female participant, this negative experience led to a prolonged period without seeking treatment from any providers. She stated, “Yeah, I was going to go to another doctor [but] after that, like I said after that experience I just kind of […],” and then after trailing off, the participant made a hand gesture that conveyed feeling sick of the whole process. Experiences like these, while rare in the current study, are significant because they could lead to delays in receiving answers about ongoing health issues or receiving appropriate healthcare to address those issues.       111 Figure 7  Final Themes for the Impact of Mistrust on Treatment Seeking  Note. This figure shows the final thematic map for RQ3.3: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they pursue treatment? Due to the limited number of instances of participants endorsing some experience related to how mistrust impacts whether they seek treatment, only two instances of a theme were needed for it to be considered significant. One additional theme that arose, “Mistrust Related to a Specific Procedure,” did not provide a response to the research question but did provide nuance to how trust in general can play a role in healthcare decision-making. This theme is depicted as floating to represent that it has sufficient support but does not directly answer this research question Previous Treatment was Unsuccessful  Two participants also reported having an experience with an unsuccessful treatment, which led to a lack of trust in the effectiveness of future treatments. For example, another 65-year-old female participant stated, “Well, I was going to the orthopedic for my knees, and they were giving me shots. And they would tell me that those shots would last for like two to three months, which it didn't.” As with participant’s report of negative experiences with providers,  112 having an unsuccessful treatment seemed to be a source of mistrust that then impacted later decision-making. It was interesting how much emphasis was placed on mistrust based on negative experiences with a specific procedure or provider, rather than mistrust based on the healthcare system. Mistrust Related to a Specific Procedure  One additional theme that arose did not provide a response to the research question but did provide some additional nuance to how trust in general can play a role in healthcare decision-making. Two participants reported that their lack of trust had more to do with the procedure itself. One participant declined to provide any details other than that they declined to get a colonoscopy, while another reported that they declined to get a biopsy after being warned that there could be negative side effects of the procedure because of what the biopsy was for. This participant reported that after this experience, they had more trust in their provider because he provided a clear description of the risks and benefits of the procedure. Two of the participants reported secondary issues (not better categorized under either of the two major themes). One participant reported that a lack of trust in the effectiveness of virtual exams during COVID led them to seek a new provider (their primary care provider at the time of their interview). Another participant who reported they had a past negative experience that led to them not trusting a specific provider and not returning to that provider indicated that part of the reason he had seen that provider in the first place was due to a change in his insurance. Impact of Mistrust on Treatment Adherence  Because only two participants endorsed an experience where a lack of trust in either the healthcare system or a specific health care provider impacted their decision to adhere to specific  113 treatment recommendations, those numbers were insufficient to consider them themes so much as stand-alone responses. Of these two responses, one participant indicated they did some research on their own and sought a second opinion from their pharmacist regarding a prescription because they felt uncertain about the medication itself. However, after confirming with their own research and their pharmacist, they did end up following the treatment recommendation and had a positive outcome. This participant did not directly indicate that a lack of trust in the healthcare system or a health care provider led to their hesitance about the medication. Based on this participant’s report that she trusted the healthcare system and her primary health care provider, it is perhaps more accurate to say that she had concerns about the medication itself, but this was not clarified. The other participant reported that they stopped following a specific treatment recommendation (also medication related) after having an allergic reaction. For this participant, it would perhaps be more accurate to say that a negative experience with following a treatment recommendation led to not trusting the provider or treatment recommendation rather than that a lack of trust led to not following a treatment recommendation.  Communication Challenges and Solutions Themes were developed to address the fourth set of research questions aimed at understanding what communication barriers arise in older rural African American’s experiences with health care providers, how they address these communications barriers, and how communication barriers may impact their healthcare decisions. To accomplish this, participants were asked several questions. First, they were asked where they got their information regarding health and medical treatments. Then they were asked if they had ever received information from a health care provider that was unclear and whether they would feel comfortable telling a health care provider if they did not understand something. Next, participants were asked if they ever  114 received information or recommendations from a health care provider that they disagreed with and whether they would feel comfortable telling their provider if they disagreed with something. Lastly, participants were asked what their health care providers can do to better communicate with them about their health. Communication Barriers  Only ten participants reported receiving information from a health care provider that was unclear, and only six participants reported ever disagreeing with a health care provider. As will be addressed later, nearly all participants reported feeling comfortable telling a health care provider if they did not understand something or disagreed with the provider. As such, the responses of participants who endorsed experiences where a health care provider’s information was unclear, who endorsed experiences where they disagreed with providers, and those that indicated discomfort with addressing unclear information or disagreement were analyzed to determine what potential communication barriers arose. Due to the limited number of instances of participants endorsing experiencing a communication barrier of any kind, only two instances of a theme were needed for it to be considered significant. Thematic analysis of these responses revealed four major themes. These themes related to four elements that are always present in patient-provider interactions, which included factors related to: (1) the patient; (2) the provider; (3) the patient-provider relationship dynamic; and (4) qualities of the situation (outside of the people involved). See Figure 8 for a visual representation of these findings.     115 Figure 8  Final Themes for Communication Barriers  Note. This figure shows the final thematic map for RQ4.1: What communication barriers do older rural African Americans experience when interacting with health care providers? Due to the limited number of instances of participants endorsing experiencing a communication barrier of any kind, only two instances of a theme were needed for it to be considered significant. Patient Health Literacy  Five participants attributed the communication issues they experienced to some aspect of their health literacy, including not understanding what a health care provider told them, something not making sense to them (because of a lack of understanding how conditions relate to one another), or incorrectly assuming something. A 67-year-old female participant summarized  116 this theme best. She stated, “sometimes you get a doctor that you cannot understand what they are saying.” Poor Communication by Provider  Four participants reported a time where their provider, in some way, failed to communicate effectively with them as patients. This could occur in several ways. One way that participants reported this could occur was by the health care provider not giving the participant enough information. As one participant, a 67-year-old woman, described, “I think that the physician didn't realize that he did not tell me the details that I was interested in knowing later on.” Another way that a provider could demonstrate poor communication was by not listening to the participants’ concerns or being dismissive in some way. For example, a 71-year-old female participant reported an instance where she tried to express her health concerns to a provider only for the provider to make assumptions about her without giving her concerns any further consideration. She stated, “Well, I was going to a doctor before. I knew how I was feeling one way, but then she was wanting to tell me that it was kind of psychological, and I knew better.” These descriptions are consistent with participants’ previous descriptions of poor communication by providers (see Negative Experiences section above). This further emphasizes the importance of clear communication between patients and their providers. Patient-Provider Relationship  Three participants endorsed communication barriers resulting from dynamics within the patient-provider relationship, including fear of retaliation, uncertainty about how the provider will respond to the patient’s concerns, and not wanting to be perceived as rude or confrontational. For example, one participant, a 63-year-old man, expressed that sometimes,  117 even when he knew he was not understanding what his doctor was telling him, he felt afraid to speak up. He stated, “And the reason for that is that I don't want no confrontations, and more importantly I do not want them not to do what they are supposed to be doing because they might have thought I had an attitude, or that I was questioning their ability.” This participant had previously described a time where he had experienced retaliation of this kind where he was told not to come back to his primary care provider’s office after seeking a second opinion about a health issue he had. In his case, a previous negative experience with a past provider negatively impacted how he interacts with his current providers. Situational Factors  Lastly, two participants reported a communication barrier resulting from factors outside of patient-provider communication. In both cases, the barrier resulted from a lack of diagnostic clarity at that point in the treatment. In other words, no one, not even the health care provider, had enough information in that situation. For example, one of the participants, a 60-year-old woman, reported that this occurred when she was dealing with issues that were later determined to be because of gallstones. She stated, “I was having problems with my stomach, and over at the ER in Columbus, they could not tell me what was going on. So, I went to West Point, and they went right on and found out what my problem was.” Adding Nuance: Where Participants Get Their Information  Most participants (34) indicated that at least one of their sources of information regarding health and medical treatments was their health care providers (e.g., doctors, nurses, pharmacists, etc.). Of these 34 participants, the vast majority (28) indicated that their health care providers were their only source of health information. Other sources of health and healthcare information  118 reported by participants were online sources, reported by 10 participants; other people (e.g., friends, family-members, co-workers, etc.), reported by seven participants; television, reported by six participants; books, reported by four participants; their insurance provider, reported by one participant; and the radio, reported by one participant. Addressing Communication Barriers  Nearly all participants reported that they would feel comfortable asking a health care provider for clarification of something they did not understand (45) and telling a health care provider if they disagreed with their information or treatment recommendations (44). Overall, participants reported very similar reasons for comfort with asking for clarification and expressing disagreement, so codes related to responses to both qualitative questions were considered together and then categorized into themes. Thematic analysis of these responses revealed five major themes. See Figure 9 for a visual representation of these findings. Understand Own Health and Make Informed Decisions More than half (26) of participants endorsed some aspect of this theme. This theme was defined by participants’ expressions of wanting to gain knowledge, better understand their own health, and indicate that they did not want to make health decisions unless they had as much information as possible. Most of these participants emphasized that they want to better understand their own health. For example, a 69-year-old female participant stated, “Because I need to get an understanding about my health, so I would have to ask questions if I did not understand.” Other participants emphasized that getting a better understanding was essential for making informed decisions about their health and healthcare. For example, one 55-year-old  119 female participant indicated that if she did not receive clarification, then she would not proceed with treatment. She stated, “If they do not explain that, I tell them no.” Figure 9  Final Themes for Reasons Participants Felt Comfortable Addressing Communication Barriers  Note. This figure shows the final thematic map for RQ4.2: Do older rural African Americans feel comfortable addressing communication problems with their health care providers? Why or why not? Nearly all participants reported comfort with addressing communication barriers. The above diagram represents participants’ perspectives on why they felt comfortable addressing communication barriers.    120 Wants Their Health Care Provider to Know  Just under a third of participants (14) expressed that they want their provider to know how they are feeling and what they do or do not understand. For example, a 69-year-old male participant simply stated, “If something's wrong, I want somebody to know.” Similarly, a 69-year-old female participant stated, “So that they can understand how you feel and give clarification.” This emphasis on wanting providers to know how they feel or to make it clear that they do not understand something ties in well with the themes related to bodily autonomy and the patient-provider relationship described below. Expression of Bodily Autonomy.  Over one quarter of participants (12) reported that addressing communication barriers was important because the outcome impacts them and they expressed ownership of themselves in some way (e.g., “it’s my body,” “it’s my health,” “it’s my decision”). For example, when asked what helps him feel comfortable addressing communication challenges with his health care providers, a 65-year-old male participant stated, “I mean I have no problem doing that at all because ultimately it’s my health we are trying to fix.” Similarly, a 65-year-old female participant responded that, “I mean the thing that helps me feel comfortable is because we’ve got control of our own bodies.” This emphasis on addressing communication barriers because of the importance of bodily autonomy may be especially meaningful to the target population, given their historical experiences with research and healthcare professionals not honoring that bodily autonomy.     121 Comfort Based on Relationship  A total of 10 participants noted that the positive qualities of their relationship with their provider(s) help them feel comfortable addressing communication barriers. Two of these participants, a 71-year-old man and a 63-year-old woman, simply stated that they felt comfortable addressing communication barriers because they knew their providers would listen to them. Other participants emphasized how they trust their providers. For example, a 59-year-old female participant reported that she would feel comfortable addressing communication barriers with her provider because of the thrust built up over several years of being treated by him. She stated, “I feel I trust him. I have been going to him for a while.” Part of Identity  Lastly, eight participants expressed that they feel comfortable addressing communication barriers due to the value they place on open communication or attributed their comfort to being “just how they care.” In other words, for these eight participants, speaking up in these situations is consistent with their sense of identity. One participant, a 56-year-old man, emphasized the value he placed on advocating for himself. He stated, "Because, I mean, like I said, you can’t sit there quietly. If there is something you do not care about or are not liking about what they are telling you, whatever, you should speak up. […] If you do not put your opinion in, they are just going to do whatever they feel like.” Meanwhile, a 66-year-old female participant emphasized that being outspoken and honest were traits that she associated with herself. She stated, “Because that’s the way I am. […] if I feel something, it will bother me if I don’t get it out, and I just like people to tell me the truth, and I like to tell them the truth. I’m just that way.” While this theme was endorsed more rarely than the others, it characterizes how some people are inherently more  122 likely to speak up for themselves, but other people may benefit from other factors (the previous themes) to facilitate this self-advocacy. Recommendations for Providers from the Patient Perspective  Of the 47 participants included in this sample, 13 expressed that their health care providers were already excellent at communicating with them. These participants were asked what they especially liked about how their providers communicated with them. The remaining participants were asked to give their recommendations for how their providers could improve communication. Taken together, participant responses were categorized into themes describing qualities of good communication. These themes do not suggest that all providers are weak in all areas, but rather to provide some guidelines by which providers can measure their own strengths and weaknesses. See Figure 10 for a visual representation of these findings. Be Thorough and Clear  More than half (25) of participants described how providers should take the time to provide thorough information about things and use clear, easy-to-understand language. Most participants placed emphasis on the content of communication, specifically indicating that they would like more information regarding their health, possible treatment options, pros and cons, etc. For example, a 60-year-old female participant stated, “Well, sit down and explain more about what is going on with your health. Some of them do not even explain to you what is really going on. But if they sit down and explain what is going on, I would be satisfied with it.” Though less frequently remarked upon, participants also emphasized the importance of being straightforward and using less technical language. For example, a 63-year-old male participant stated, “Speak pretty much in layman's terms and give me options.”   123 Figure 10  Final Themes for Qualities of Good Communication  Note. This figure shows the final thematic map for RQ4.3: What can health care providers do to improve how they communicate with older rural African Americans? The themes depicted above highlight what participants consider important for communication between them and their health care providers. This diagram is not meant to suggest that all providers are weak in all areas, but rather to provide some guidelines by which they can measure their own strengths and weaknesses. Value Patient Perspective  Over one-quarter of participants (12) reported that providers should make it clear that their patients’ perspectives matter. The emphasis was placed on expressing interest, care, active listening, and respect. For example, one 67-year-old female participant stated, “I mean, just show respect for us. That is what it means to become a doctor, not what you can get.” Another  124 participant, a 63-year-old man, expressed, “I need to understand that they care about me and about my health and my well-being, and make me feel comfortable.” This is consistent with what participants reported when asked to describe characteristics of positive experiences with health care providers, where having good communication skills and being pleasant seemed were both frequently endorsed.  Outside of Appointments  A total of 10 participants indicated things that providers can do outside of scheduled appointments to facilitate good communication. One of the most reported components of communication outside of already scheduled appointments was following up with patients about their treatment. For example, a 65-year-old female participant stated, “I guess they could follow up on our treatments. [My provider] sent me for therapy on my hip, but she didn't follow up on it. You know, set up an appointment to see if it is better now.” This follow-up communication would help maintain continuity of care and would also help patients and providers adjust treatment before problems reached the level of significance that may be needed for the patient to initiate this process (see Addressing Emerging Health Concerns below). More rarely reported were reports that appointment reminders and printed post-visit instructions would be helpful. These factors indicate that patients may benefit from keeping the amount of information they have to remember from their appointments to a minimum.  The Human Element  Lastly, five participants expressed a preference for talking to another person. The specifics varied from participant to participant, but this included preference for in-person appointments and not having to deal with telemarketers or machines when you try to call a  125 provider. For example, a 56-year-old male participant described his frustration with having to navigate answering machines only to have the machine mess things up or to receive the wrong information. He stated:  Stop putting these telemarketers in your way. If you call them, there is an answering machine. It is a machine you talk to all the time. I would rather talk to a human, you know, than a machine because they always get it screwed up. It just totally throws you off. You do not get the right information from the machine, or whatever, you would be talking to. I prefer [to interact with] a person. You can get more knowledge out of it.  This participant’s response also demonstrates how not only can it be annoying to have to deal with these types of automated systems, but it can also result in misinformation or greater confusion. Given how many participants reported wanting to know more about their health, it makes sense they would want to spend their time on efforts that give them the best knowledge.  Addressing Health Concerns and Treatment Barriers  Themes were developed to address the fifth set of research questions aimed at understanding how older rural African Americans exercise their agency in addressing health issues and treatment barriers. To accomplish this, participants were asked what steps they normally take to resolve a health issue. Participants were also asked whether they have ever had an experience where they were having a health issue but chose not to seek medical treatment, and, if so, they were asked what they did instead.   126 Addressing Emerging Health Concerns  The vast majority (45) of participants reported having specific steps they followed when they had an emerging health concern. Examination of the responses of these 45 participants revealed three major themes. See Figure 11 for a visual representation of these findings. Figure 11  Final Themes for Methods of Managing Emerging Health Issues  Note. This figure shows the final thematic map for RQ5.1: What do older rural African Americans do to manage emerging health issues? Gather Information Nine participants reported that their first step was to try to get more information from their own research or by calling a health care provider to see what their next steps might be. A 67-year-old male participant reported that research was an essential first step before he and his wife could determine what additional steps needed to be taken. He stated, “If something is going  127 on that is not in the norm, then I am going to get on the phone, and […] and [my wife] would go online and pull something up. We will do research. And after doing research, we will decide [whether] we need to go and see a physician.” Similarly, some participants reported they would immediately call their primary care provider’s office to see if their provider has any recommendations regarding whether they need to seek additional medical assistance or not. For example, a 60-year-old female participant reported, “First, I would call the doctor, and I will talk to the doctor and tell him you know what is what, and then I go from there.” The primary takeaway from this theme was that gathering additional information, regardless of the source, was done with the goal of determining what next steps, if any, are necessary and appropriate. Attempt to Treat on Own First  Nine participants reported that they try to address emerging health issues on their own. This included taking steps like utilizing health monitoring devices like taking their own blood pressure, following existing recommendations (especially for issues they have encountered before), taking medications (prescribed or over the counter), and home remedies. Some participants who reported they would attempt to address medical issues on their own were the same participants who endorsed that their first step was to gather more information, while others reported that their first step was to attempt to treat the health issue on their own. Those who reported that attempting to treat the issue on their own was their first step usually alluded to health issues with which they were more familiar. For example, a 63-year-old female participant stated, “Let’s say like with my ear. You know you get this ringing, and now they are saying your sinus will be drying and there’s stuff in your ears and nose. So, I would mostly go and get something over the counter first.” In this case, the participant alluded to a condition that she has  128 experienced before and had previously received a treatment recommendation for it. Thus, she likely did not need to seek out additional information before proceeding to this step.  Seek Medical Attention  Well over half (36) of participants reported that they seek medical attention when they are experiencing a health issue. For most of these participants (24), this is their first step. For example, a 71-year-old female participant who reported that she goes straight to the doctor stated, “I go to my doctor, and I explain to him how I feel, how long I have been feeling that way or what is going on and we work from there.” Alternatively, some participants reported that they would only go to the doctor if they deemed it necessary. One such participant was a 66-year-old woman, who stated, “The steps that I normally take are that I may do home remedies for a while, and then if it seems like it’s not working for me, and I would call and make an appointment, you know, with the doctor.” Adding Nuance: Progression Through the Steps The above three themes were presented in a specific order in this section because this is the order in which some participants would proceed through all three steps. For those who endorsed a multiple-step process, the deciding factor before seeking care from a health care provider was the perceived severity of the emerging health issues. For example, one 57-year-old female participant stated, “If I get a health issue or problem or something like that, firstly I would Google it, and I would see what is going on. If there is something I can do at home, I would just do it at home. But if I can’t do it at home, I go to the doctor.”  129 Addressing Treatment Barriers  Relatively little data was available to address this research question. This was in part because only 17 participants reported that they had an experience where they had a medical issue and chose not to seek treatment. Of those 17 participants, eight reported that they did not go because it felt unnecessary. This means that only nine participants reported an experience where they had a health issue that may have needed attention but chose not to seek treatment. This was consistent with seeking medical attention being such a prevalent theme regarding what steps participants take to address emerging health issues. The only theme that emerged from these data was that seven participants reported addressing the issue on their own, either through medication or home remedies. This was also consistent with the theme of attempting to treat health issues on your own before seeking medical treatment (if necessary) regarding steps participants take to address emerging health issues. Prayer and Faith as Standalone Theme Over the course of the data analysis process, codes related to faith and prayer would periodically pop up, but there was often only one instance per research question. Because of this, the researchers decided it was worth exploring prayer and faith as a standalone theme across all research questions to determine if all these instances came from the same participant or multiple participants. For this analysis, because all data was being considered, the five-instance theme cutoff was used to determine if this theme was significant. Thematic analysis determined that this proposed theme did reach the instance threshold, with six participants endorsing it. It is worth noting that this theme emerged even in the absence of any interview questions that asked about how faith impacts health or health decision-making.   130 Perhaps not surprisingly, most of the theme instances were in the context of uncertainty or anxiety about health issues or situations that could have negative health outcomes (e.g., COVID, high risk procedures, etc.). For example, a 63-year-old male participant reported that he coped with the fear and uncertainty of the pandemic through faith and prayer. He reported, “For me, it is all about praying and asking for God's protection. I just trust in God to help me make the right decisions.” Another participant, a 73-year-old woman, indicated that she similarly used faith to deal with uncertainty related to her lack of trust in the healthcare system. She stated, “You just have to put it in the hands of God and the Son of Jesus and go with that. Because you really do not know.”  Impact of COVID-19 Due to data collection taking place during the COVID-19 pandemic, researchers also examined whether this historical context might have notably impacted participant responses. From the sample of 47 participants, 42 participants provided some insight into the potential impact. Of these 42 participants, only 14 reported any significant impact of the pandemic on their healthcare experiences. Of these 14 participants, six reported that the primary impact of the pandemic was anxiety and fear, and only two specifically indicated that they were afraid to seek medical treatment. For example, one 60-year-old female participant reported, “Well, with the COVID going on, we have been scared to go to the ER. You are scared you are going to catch COVID, and that was really scary right there. Because I do not want to go to the ER or nothing like that.”   131 Quantitative Measure of Health Literacy  A total of 45 participants completed the REALM-SF measure of health literacy. The remaining two participants participated via phone and were not able to complete the measure. Examining the total scores of the 45 participants who completed it indicated a wide range of participants’ health literacy levels. Participant scores were not evenly distributed, despite the mean score being 4.44 (SD = 2.47). The data had a fat-tailed distribution, especially on the upper end, with eight participants receiving a score of zero (indicating that they could not read any of the medical words), while 11 participants received a perfect score of seven.   132 CHAPTER IV DISCUSSION Summary and Interpretations This study aimed to examine the lived experiences of older rural African Americans with the U.S. healthcare system and their health care providers. Specifically, this study sought to understand how discrimination, attitudes of trust vs mistrust, and communication challenges resulting from health literacy and the dynamics within the patient-provider relationship impact older rural African Americans’ decisions to pursue treatment and adhere to treatment recommendations. In addition, this study aimed to better understand how older rural African Americans act as agents in their experiences with health and healthcare. To accomplish this, multiple connected research questions were developed. These research questions were organized into five sets according to the core issue they addressed. The first set of research questions aimed to understand how older rural African Americans characterize positive and negative experiences with their health care providers. The researchers hypothesized that positive experiences would be characterized by participants feeling respected and listened to and that negative experiences would be characterized by discrimination and poor communication.  The hypothesis regarding positive experiences with health care providers was supported. Participants characterized their experiences with health care providers as positive when the provider was pleasant to interact with (including being respectful) and had good communication  133 skills (including being a good listener). In addition, participants also described their experiences with a health care provider as positive when their provider demonstrated good clinical skills and was readily accessible. The hypothesis regarding negative experiences had less direct support. Firstly, negative experiences with a health care provider were reported by less than half (20) of participants. While participants did characterize their experiences with health care providers as negative when the provider had poor communication skills, discrimination was not as prevalent as anticipated and was only reported when explicitly asked about (see below). While being discriminatory could certainly fall under the theme of being unpleasant, the descriptions that participants provided for this unpleasantness included words like “rude,” “arrogant,” “not friendly,” “did not seem to care,” and “cared more about money.” Perhaps less surprising was that participants’ descriptions of what characteristics make an experience with a health care provider negative were essentially opposites of the characteristics that made an experience positive. Besides the aforementioned themes of the provider being unpleasant in some way and having poor communication skills, experiences were also characterized as negative when their provider had poor clinical skills and when they experienced some kind of delay in receiving care. The second set of research questions aimed to better understand the discrimination that older rural African Americans experience in healthcare settings and how experiences with discrimination may impact their healthcare decisions. This included an examination of the types of discrimination older rural African American participants reported and how discrimination impacts their decisions about whether to seek medical treatment and adhere to treatment recommendations. The researchers hypothesized that instances of discrimination would be frequently endorsed, and these experiences would be most frequently attributed to race, with some instances of discrimination being attributed to other factors (e.g., age, gender, ethnicity,  134 skin color, body size, etc.). The researchers also hypothesized that experiences of discrimination would be related to instances of choosing not to pursue treatment and lower treatment adherence. As previously described, experiences of discrimination were far less frequently endorsed than was hypothesized. Out of the 47 participants included in the final thematic analyses, only five participants reported experiencing unfair or disrespectful treatment from a provider that they felt was based on one or more aspects of their identity. Racism, sexism, ageism, and fatphobia or fat-shaming were reported. Additionally, two participants expressed that they were aware that discrimination happens in healthcare settings and that it could potentially happen to them, despite a lack of firsthand experience. The hypothesis that experiences of discrimination would be related to instances of choosing not to seek treatment was supported by the data. All five participants who reported experiencing discrimination by a health care provider reported that they did not seek treatment from that provider ever again. This happened for two reasons. Both participants who endorsed experiencing racial discrimination reported that the provider they had that experience with was not their normal provider, and they did not receive care from those providers again. The other three participants who endorsed sexism, ageism, and fatphobia reported that they chose not to return to those providers following their experiences. These five participants denied discrimination ever impacting whether they adhered to a provider’s treatment recommendations. This makes sense given that they reported never seeing those providers again. Because of this, there was insufficient data to determine whether discrimination resulted in lower treatment adherence, as hypothesized.  The third set of research questions aimed to understand whether older rural African Americans trust the healthcare system, whether they trust their primary health care providers, and how their trust or lack thereof may impact their healthcare decisions. The researchers  135 hypothesized that, given historical and individual instances of mistreatment, mistrust of the healthcare system would be frequently endorsed. The researchers also hypothesized that mistrust in their primary health care provider would be less frequent than mistrust in the system. In addition, the researchers hypothesized that greater mistrust in either the healthcare system or a specific health care provider would be related to decisions not to pursue treatment and lower treatment adherence.  The hypothesis that mistrust in the healthcare system would be frequently endorsed was not supported. Only nine of the 47 participants reported that they did not trust the healthcare system. An additional eight reported that they had partial trust, and more than half (29) reported complete trust in the healthcare system. Furthermore, while four of the nine participants who reported mistrust in the healthcare system attributed this mistrust to past negative experiences with their own providers, only one participant attributed their lack of trust to historical wrongs. Instead, five participants reported financial reasons for their mistrust, and two reported that their lack of trust was because information has been so mixed at times that it was hard to know who to trust. Alternatively, participants who reported trusting the healthcare system attributed this trust overwhelmingly to their own past positive experiences or lack of negative experiences with their healthcare. Participants also reported trust in the healthcare system based on confidence in their own ability to navigate it and a genuine belief that the U.S. healthcare system was of high quality.  The hypothesis that participants would report greater trust in their primary care providers than in the system was supported. All but two participants (45) reported trust in their primary care providers, compared to the 29 who reported trust in the healthcare system. Participants attributed this trust in their primary care providers to previous positive experiences with that  136 provider related to aspects of the provider (e.g., provider was efficient, polite, thorough, etc.) or positive aspects of their patient-provider relationship (e.g., length of relationship, feeling like their provider cared about them). Participants also attributed their trust in their primary care providers to the quality of communication and follow-up care. Though this theme was subthreshold for significance, four participants noted that when you encounter health issues, you need to go to a health care provider, so they felt they had no choice but to trust their provider.  Regarding the impact of mistrust on treatment seeking, only seven participants reported an experience where they did not seek treatment due to mistrust. Two participants reported that a negative experience with a provider led to a lack of trust, which led to them not seeking treatment from that provider after the experience, much like what occurred with the individuals who endorsed experiencing discrimination. Two other participants reported having an experience with an unsuccessful treatment, which led to a lack of trust in the effectiveness of future treatments. Two other participants indicated that the mistrust they felt was more related to a specific procedure than to mistrust in the healthcare system or their providers. As for the hypothesized impact of mistrust on treatment adherence, only two participants endorsed an experience where a lack of trust in either the healthcare system or a specific health care provider impacted their decision to adhere to specific treatment recommendations, so there was insufficient data to draw any conclusions.  The fourth set of research questions aimed to understand what communication barriers older rural African American’s experience when interacting with health care providers, how they address these barriers, and how these communication barriers may impact their healthcare decisions. The researchers hypothesized that participants would report experiencing communication barriers from inequities in health literacy, their health care providers using too  137 much technical language, a lack of information being provided to them, and a lack of shared decision-making. The researchers also hypothesized that some participants would feel comfortable addressing communication problems with their health care providers, while others would not. Furthermore, their reasons for this comfort, or lack thereof, were expected to depend on whether there were other communication challenges, participants’ reported level of trust in their provider, and what value they place on self-advocacy. The researchers further hypothesized that participants would have suggestions for how providers can improve communication, including the use of less technical language and providing more information to patients.   The hypothesis that participants would report experiencing communication barriers from inequities in health literacy, their health care providers using too much technical language, a lack of information being provided to them, and a lack of shared decision-making was supported. Thematic analysis revealed that patient health literacy, poor communication by provider (e.g., not providing enough information, not breaking things down, not listening, etc.), patient-provider relationship dynamics (i.e., fear of retaliation, uncertainty about how the provider will respond to the patient’s concerns, not wanting to be perceived as rude or confrontational) were the most common barriers to communication. Participants also reported situational factors that created a communication barrier in the form of neither the patient nor provider having diagnostic clarity regarding the participant’s health at the time. The researchers’ hypothesis that some participants would endorse feeling comfortable addressing communication problems with their health care providers, while others would not, was technically supported, but the number of participants who endorsed feeling comfortable addressing communication barriers was significantly higher than expected. Nearly all participants reported that they would feel comfortable asking a health care provider for  138 clarification of something they did not understand (45) and telling a health care provider if they disagreed with their information or treatment recommendations (44). Meanwhile, the hypothesis that comfort in addressing communication barriers would depend on whether there were other communication challenges, participants’ trust in their providers, and how much participants value self-advocacy was supported by the data. Thematic analysis revealed that comfort with addressing communication barriers was attributed to having a positive relationship with their provider and as an expression of bodily autonomy and ownership of one’s own body and health. In addition, participants attributed comfort with addressing communication barriers because they want to better understand their health and make informed decisions, they want the provider to know how they are feeling, and they identify as someone who is a clear communicator (e.g., honest, straightforward, outspoken, etc.).  The last hypothesis, that participants would have suggestions for how providers can improve communication, including the use of less technical language and providing more information to patients, was also supported. According to participants, the qualities of good communication included being thorough and clear (i.e., provide sufficient information, use less technical language, be honest, break things down), as well as valuing the patient perspective (i.e., expressing care, listening, being polite), communicating with patients outside of scheduled appointments (i.e., call to follow up about treatment recommendations, give appointment reminders), and making sure to have patients interact with other people whenever possible (e.g., face-to-face appointments, talking to a person rather than an automated answering machine system, calling rather than just receiving mail, etc.). The fifth and final set of research questions aimed to understand how older rural African Americans exercise their agency in addressing health issues and treatment barriers. The  139 researchers broadly hypothesized that participants take steps to address emerging health concerns and that when they experience barriers to seeking medical assistance, other steps would be taken. These hypotheses were intentionally more open-ended and exploratory in nature because the responses were anticipated to have a wide variety and be somewhat context dependent. The hypothesis that participants take steps to address emerging health concerns was heavily supported by the data. Only one participant responded that they did not do anything when they experienced a medical issue. All other participant responses were categorized into three somewhat sequential themes. The first step for several participants was to gather additional information either through a phone consultation with a health care provider or through doing their own research. The first or second step for some participants was to try to address the emerging health issue on their own. This included taking steps like utilizing health monitoring devices like taking their own blood pressure, following existing recommendations (especially for issues they have encountered before), taking medications (prescribed or over the counter), and home remedies. The third and final theme that emerged and was endorsed by a significant majority of participants (36) was addressing emerging health issues by seeking medical attention. Of these 36 participants, 24 reported that this was their first step, while others reported they would only seek medical attention if the issue was severe enough and could not be handled through research and addressing it on their own.  Although not related to a specific research question or hypothesis, faith and prayer emerged as a standalone theme. Perhaps not surprisingly, most of the theme instances related to faith and prayer were in the context of uncertainty or anxiety about health issues or situations that could have negative health outcomes (e.g., COVID, high risk procedures, etc.).  140 Implications  Perhaps the most important implication of the current study was the apparent interconnected nature of many of the findings. For example, good communication was a major theme, not only as a characteristic of positive experiences with health care providers but also as something that contributed to having trust in participants’ primary health care providers. The pleasantness of their health care provider was another commonly endorsed theme that was reported both as a characteristic of a positive experience with a health care provider and as a trait that built trust between participants and their providers. This pleasantness included expressions of care, showing positive affect (e.g., friendly, nice, cheerful), and building rapport with patients. These qualities are some of the features of patient-centered communication as described in the existing literature (Mauksch et al., 2008). This finding was consistent with existing research that demonstrated a relationship between providers using patient-centered communication behaviors and patients having more trust in their provider (Ali & Young 2020).  When one considers how these types of patient-centered communication behaviors have been associated with improved health status (Stewart et al., 2000) as well as both the social and physical well-being of patients (Kuipers et al., 2019), one can better appreciate the importance of providers being pleasant and having good communication skills. After all, in the current study, another significant theme was that of participants wanting to better understand their health and to be able to make informed healthcare decisions. Participants expressed a significant desire to be active agents in their own health, which included seeking out information through doing their own research and consulting with a provider. In fact, most participants (34) indicated that at least one of their sources of information regarding health and medical treatments was their health care providers. Of these 34 participants, 28 indicated that their health care providers were their only  141 source of health information. This idea further emphasizes the importance of clear communication between patients and their providers, specifically the importance of both personal and organizational health literacy, as previously described (Santana et al., 2021). These factors can have a profound impact on how participants navigate the healthcare system (S. Davis et al., 2020). With health care providers being the primary and, in many cases, only source of health information, it is essential that health care providers make sure they provide sufficient information and convey that information in a manner patients can understand. This connects well with the underlying theme of open and continuous dialogue between patients and providers that appeared in the current study. Several interesting comparisons can be made between the results of the current study and findings from recent research publications. One excellent and very recent (data collected during March 2023) point of comparison is a Harris Poll commissioned by the American Academy of Physicians Associates (AAPA) to better understand the patient experience within the U.S. healthcare system (AAPA, 2023). This poll showed that many of the most common complaints of participants are complaints endorsed across demographic groups. One such finding was that patients tend to have a more positive view of healthcare at the micro rather than macro level (AAPA, 2023). For example, 53% of poll participants graded their local healthcare above average, but only 40% graded the overall U.S. healthcare above average (AAPA, 2023). This is consistent with how nearly all participants in the current study reported that they trusted their primary care providers, compared to a little over half of participants reporting complete trust in the healthcare system. Similarly, while the Harris Poll results showed that only 10% of participants gave the healthcare system a score of “A,” approximately 27% gave the healthcare experiences they have had in the past year as an “A” (AAPA, 2023). This illustrates that people  142 tend to have a more positive view of the care they receive from their local providers than care provided by the system as a whole. Based on the existing literature regarding the health care experiences of African Americans, it was surprising how few participants reported ever having a negative healthcare experience. The results of the Harris Poll may offer an age-related explanation for this (AAPA, 2023). The poll found that adults aged 50 and older were more likely than their younger counterparts to give the healthcare they received in the past year an “A” grade (AAPA, 2023), suggesting that older adults may generally perceive their care more positively. Thus, given that all the current study’s participants fell into this age category, they too may have been more inclined to rate their experiences positively. Although no apparent interviewer race effect emerged, participants may also have been less inclined to report negative experiences when talking face-to-face with researchers, as in the current study. A large-scale study like the Harris Poll referenced above may offer greater anonymity and thus greater comfort to report negative experiences. Alternatively, given how most of our sample was collected from the same small communities, it is possible that word of mouth may mitigate some negative experiences. Put more plainly, the few participants who had negative experiences with a healthcare would have been able to share this with their community, and other members of the community would be able to avoid that provider or location. Indeed, there is research evidence to suggest that negative word of mouth can be more influential than positive word of mouth, and that poor quality service was the main reason for negative word of mouth (Pauli et al., 2022).  One comparison between the current study and the Harris Poll (AAPA, 2023) results that speaks to the unique qualities of the current sample was their differences in comfort with speaking up during healthcare visits. The poll results found that 40% of their participants  143 reported there are times when they are afraid to speak up during healthcare appointments. By contrast, in the current study, nearly all participants endorsed comfort with addressing communication issues with their providers. However, it is worth mentioning that the Harris Poll also found that older adults were less fearful of speaking up during their healthcare appointments, with only 27% of those aged 50 to 64 and 18% of those aged 65 and up reporting this fear (AAPA, 2023). That said, the percentage of participants who indicated fear of speaking up during appointments in the current study was still lower at 6%. When asked about the reasons for this comfort with addressing treatment barriers, participants in the current study emphasized wanting to understand their own health, wanting their providers to understand how they feel, wanting to express their bodily autonomy, and that speaking up was an important aspect of their identity. In addition, there were clear connections between comfort speaking up during appointments and participants having positive experiences with their primary care providers.  Another interesting difference between the Harris Poll results and those of the current study was regarding understanding healthcare information. Approximately 40% of Harris Poll participants reported that they do not always understand the information or recommendations their health care providers give them (AAPA, 2023). In the current study, only 21% reported that they had experiences where they did not understand their providers. One possible explanation for this difference could be that participants in the current study may have overreported their confidence in their ability to speak up due to the in-person format of data collection, compared to an anonymous poll. It may also be that the participants of the current study feel a greater need to advocate for themselves because of their intersectional identities. As the Harris Poll emphasizes, clear communication is a crucial component of the patient-provider relationship, and advocating for one’s health with their provider is important (AAPA, 2023). This is especially the case when  144 one considers the alarming statistics regarding provider burnout and how this contributes to them potentially being in more of a rush, feeling more burned out, or failing to establish rapport (HealthDay, 2023). Patients being willing to advocate on their own behalf may help bridge this gap.  One noteworthy similarity between the Harris Poll results and those of the current study related to time spent during visits. The Harris Poll found that 64% of participants agreed that they wish their health care providers would take more time to understand them (AAPA, 2023). Many participants in the current study expressed that “taking the time” was an important aspect of good communication. Unfortunately, existing research has shown that feeling like there is not enough time during appointments was a common complaint among both patients (AAPA, 2023; Linzer et al., 2015) and their providers (Porter et al., 2023; Prasad et al., 2019). Another similarity related to time was related to delays in receiving treatment. The Harris Poll examined the most endorsed ways that the healthcare system was deemed to not be meeting people’s needs and found that 31% of participants indicated it takes too long to get an appointment (AAPA, 2023). In the current study, delaying care, including delays in receiving an appointment, was a significant theme that characterized negative experiences with health care providers.  One curious difference between the results of the current study and the existing literature was related to medical costs. The results of the Harris Poll found that 65% of rural adults and 66% of all Black adults cited affordability as their top barrier to accessing healthcare (AAPA, 2023). Given that the current study participants belong to both of those groups, one would expect affordability to have come up more frequently as a barrier to care. Furthermore, concerns related to the high costs of medical care in this country are far from limited to rural and Black adults. As Dr. Robert H. Shmerling from Harvard Health Publishing (2021) described, the cost of care is  145 one of the biggest concerns related to the U.S. healthcare system. In fact, healthcare costs in the U.S. are far higher than in other high-income nations despite scoring lowly on many key health measures (Tikkanen & Abrams, 2020). There are two possible explanations for this lack of commentary on cost. The first is that the current study focuses a bit more on experiences participants have had with their providers on an interpersonal level (e.g., discrimination, trust vs mistrust, communication, etc.). The second is that all the participants in the current study had health insurance at the time of their interviews, which may have mitigated some of the concerns related to costs. In some ways, the participants in the current study seem to have been lucky regarding access to primary care providers and specialists. Even though most participants were from smaller communities, their proximity to micropolitan urban centers gave them descent proximity to healthcare. Most of the participants in the current study lived within 20-30 minutes of three hospitals. This readily available care may have given participants the option to change providers when they had negative experiences with another primary care provider. As the authors of the Harris Poll findings pointed out, primary care providers help patients navigate the healthcare system (AAPA, 2023). Thus, having access to primary care providers that one trusts and can establish a good rapport with is incredibly beneficial in helping people navigate the healthcare system successfully. It is worth noting that several participants in the current study indicated that they had a long relationship with their primary care providers and endorsed positive regard for their providers. These longer relationships with providers and access to alternatives and second opinions may also partly explain the relatively small number of negative experiences endorsed by participants. Furthermore, the availability of options also could have allowed participants to choose a provider they trust to help them navigate the rest of the healthcare system, thereby  146 preventing other problems with healthcare related to being lost in the system. In addition, most participants in the current study reported that they would seek out medical care if they felt they had a need for it. This willingness to seek out care further speaks to the level of trust that these participants had in their providers. Unfortunately, the results of the Harris Poll indicate that the number of primary care providers per capita has decreased over time (AAPA, 2023). The Harris Poll also indicated that 81% of their participants reported fearing that healthcare quality would diminish as care became increasingly focused on making a profit rather than on caring for patients. Moreover, 68% of their participants expressed concern that healthcare shortages would impact them and their loved ones (AAPA, 2023). With how recently this Harris Poll took place, it is possible that if the current study were repeated now, approximately a year and a half later, some of the results could be different. The state of health care and healthcare equity in this country is an ever-shifting landscape, and future research should continue to monitor the patient experiences whether by smaller qualitative studies like the current study, or larger more quantitative studies like the AAPA’s Harris Poll. Limitations Study Design  Some of the limitations of the current study are the result of the study design choices. For example, the interview questions that were the focus of this study’s thematic analysis had a Flesch–Kincaid reading level of 8.4, suggesting that the questions could be understood by someone with the reading level of an eighth grader. It is worth noting that nearly a quarter of this study’s participants did not complete high school. Furthermore, there is still a literacy gap between African Americans and White Americans (American Council on Education, 2020).  147 Even though the interviews were conducted verbally, some questions may have been more challenging and could have potentially limited participant responses. A review of the data showed that a few participants struggled more with answering interview questions, with questions needing to be re-worded by the interviewer multiple times. Not surprisingly, this issue occurred more with the participants who had not completed high school, especially the three participants whose highest level of education was the fifth grade. Because of this, these participants were more likely to have interviewers move on from questions without receiving an answer or skip prompts for additional information. This was one of the previously mentioned reasons why not all 47 participants provided responses to every question. It is possible that if these questions were reworded to be at a lower reading level in advance of interviews, the final data set may have been richer with more in-depth answers from these participants.   Another design limitation related to literacy was the use of the REALM-SF, a quicker alternative to the REALM, as a brief measure of health literacy. The measure was selected because it was designed to provide a quick measure of patient health literacy, especially for research purposes (Arozullah et al., 2007). The REALM scale is one of the most used measures of health literacy in research (Dumenci et al., 2013). However, Dumenci and colleagues’ (2013) content analysis of the REALM revealed that it would be better described as a measure of reading and pronunciation ability. Thus, the REALM can only really be used to make inferences about participant’s ability to read and pronounce health-related terms (Dumenci, 2013). In other words, alternative measures of health literacy would be advised for future research. Another limitation of the current study was that it did not utilize member checking, also known as participant or respondent validation. This process involves giving participants data or results to verify accuracy and fit with their experiences (Birt et al., 2016). Member checking is  148 one of many methods of improving the validity of qualitative research, including in thematic analysis (Nowell et al., 2017). Part of the reason this was not completed in the current study was that the researchers wanted to further maintain participant anonymity by not recontacting them. To combat the lack of member checking in the current study, the researchers utilized researcher triangulation, another method of increasing the trustworthiness of qualitative data, and a rigorous and thorough audit process, as recommended by Nowell and colleagues (2017) and detailed in Research Method (Chapter II) and Appendix C.  Another limitation of the current study, especially considering the long relationship that many participants endorsed having with their providers, are potential issues related to retrospective memory. For example, one participant who indicated she had a positive relationship with her provider reported that she had been seeing the same primary care provider for 37 years. Given that most participants who reported having negative experiences with a provider reported never returning to that provider, most participants who reported seeing the same primary care provider for many years likely did not have any negative experiences during that time. Thus, when asked if they had a negative experience with a health care provider, participants needed to recall experiences that predate the long relationship with their current provider, unless they ever needed care from another provider (e.g., ER or specialty care). In addition, the researchers did not ask participants when they last saw their primary care provider (or if they even had a primary care provider), so it is possible that several participants would have needed to recall experiences or relationships with providers that may not have occurred in the past several years. Obtaining this information could have provided some very beneficial context for participant responses. Furthermore, research has found evidence of a “positivity” effect on older adults’ memories (Mather, 2006). This effect does not occur because  149 of any physiological changes in the brain but rather as a result of goal-directed processes aimed at enhancing positive information and diminishing negative information (Mather, 2006). Thus, there may be some inherent limitations in asking older adult participants to describe negative experiences they have had with health care providers.  Generalizability  There were also some limitations regarding the generalizability of the findings due to some unique characteristics of the participant sample. As noted above, despite being sampled from micropolitan areas, with most participants being sampled from outside of the urban center of their micropolitan counties, the participants in the current sample still had relatively good access to healthcare. Part of this may be because these counties include or are near the college town of a large public university. Participants reported an average distance of 16.30 (SD = 6.62) miles from a hospital. Although this distance is longer than average for even rural communities (Lam et al., 2018), participants lived within roughly the same distance of three major hospitals. So, while the distance could pose a barrier, though not one directly reported by participants, participants still had options when it came to their providers.  Another potential issue with generalizability for the current sample was that the average patient demographic that participants’ providers were treating might be vastly different from other parts of the country. The current study was sampled from locations where African Americans at minimum made up one-third of the population (U.S. Census Bureau, 2021). In addition, one of the most frequently mentioned hospitals was in an urban center where 61.4% of the population identified as “Black or African American,” in 2020 (U.S. Census Bureau, 2021). Because of this, the health care providers in Oktibbeha, Clay, and Lowndes counties, Mississippi, may be more familiar with working with African American patients than other U.S.  150 providers. Research by Crowne (2013) has shown that cultural exposure helps people develop cultural intelligence, a “multifaceted competency consisting of cultural knowledge, the practice of mindfulness, and the repertoire of behavioral skill” (p. 182-183; D. Thomas & Inkson, 2004). Thus, it may be that the health care providers in these areas practiced more culturally competent care and were more aware of how to best serve the needs of the current study’s participants. Furthermore, the comfort and trust that participants reported having with their providers suggests that these providers are practicing at least some degree of cultural safety. Another important consideration regarding the generalizability of this study’s findings was survivorship bias, sometimes known as selection bias due to differential survival or left truncation, which is the idea that only certain individuals make it to old age (Mayeda et al., 2016). Survivorship bias has been known to distort results using older adult samples (Banack et al., 2019). Given that research has found that African Americans have lower life expectancies (Arias, 2007), and Mississippians had the lowest life expectancy (71.9 years old) of any state in the United States in 2020 (Arias et al., 2022), the participants in the current study may be unique in some ways that have allowed them to reach older adulthood. For example, it is possible that individuals who were more likely to be discouraged by having negative experiences with healthcare or who were less likely to advocate for their own healthcare may have died before they could reach the age of the current sample. In other words, the participants in the current study may have done things differently (e.g., immediately seeking medical attention when dealing with an emerging health issue, etc.) that helped them to live as long as they have. They may be more on top of addressing health issues, following treatment recommendations, and advocating for their own health than rural African Americans who did not reach that age.  151 Future Research  Perhaps one of the current study’s greatest strengths was its use of the cultural safety framework. The cultural safety framework was referenced at every level of this study and paired well with Braun and Clarke’s (2006) reflective thematic analysis. This was because the reflexive journal entries gave the interviewers the opportunity to exercise cultural humility through self-reflection, as described by Kumagai and Lypson (2009). The cultural safety framework also helped center the participants’ perspectives. Even when asking about ways that providers could improve their performance, the emphasis was placed on the recommendations coming from the participant perspective. Theme generation was also informed by the cultural safety framework. The cultural humility and self-reflection components of cultural safety were used to help minimize bias, and the more contemporary view of culture resulted in the decision to utilize a contextualist approach to coding and theme development. As previously described, the contextualist method reflects how individuals create meaning from their experiences and how the broader social context influences those meanings (Braun & Clarke, 2006). This approach is complementary to the contemporary view of culture used in the cultural safety framework that views culture as “a complex system of meanings entrenched within historical, social, economic, and political processes” (p. 5; Yeung, 2016). Therefore, the cultural safety framework is uniquely well suited for balancing the lived experiences of diverse participants with the historical and systemic factors that are an innate part of their context. For this reason, the cultural safety framework can offer a fresh perspective on how to approach research with participants of diverse and intersectional identities, like the older rural African American participants in the current study.   152 As such, future research should continue utilizing the cultural safety framework in research regarding the healthcare experiences of patients from diverse backgrounds. One place to potentially start this process would be in replication studies of the current study. These replication studies could be utilized with older rural African Americans living in other parts of the U.S. or with participants who may share some characteristics with the current sample but differ in other ways. It would be interesting to see how older rural African American responses might be impacted by increasing levels of rurality (e.g., noncore, unincorporated land, farming communities, etc.). For example, researchers could examine how participant responses from the current study differ from those from a replication study performed with older rural African Americans living in the Mississippi Delta, where medical services are less available (Wang et al., 2017). Alternatively, future research could explore how different themes may emerge based on other participant demographics. For example, this study could be replicated with American Indian and Alaskan Native (AI/AN) participants living on reservations or older White Appalachians, to name a few.  Another area for future research would be to use the current qualitative study and future replication studies to inform later quantitative research. For example, the current study could inspire research regarding methods of increasing the quality of health care experiences and how this may impact treatment seeking (e.g., returning for follow-up appointments). Similarly, a quantitative study could examine how following the recommendations for improving communication provided by this study’s participants could improve patient health outcomes and satisfaction. For example, a study assessing patient satisfaction and patient-rated quality of communication as a function of how much time providers spend with their older rural African American patients could be illuminating. Furthermore, this research could inform interventions  153 for improving the relationship between older rural African Americans and their healthcare providers.  Additional research could be dedicated to developing a specific cultural safety model for working with older rural African Americans (or other U.S. populations). Other research could be dedicated to developing training for U.S. health care providers in the cultural safety framework and how it can inform their approach to care. This would also offer the opportunity for studies to potentially compare the quality of care provided by U.S. health care providers who were trained in cultural competence to those who were trained in cultural safety.  At this time, the cultural safety framework is still predominantly used in Australia, New Zealand, and Canada to address health inequities experienced by their Native and Indigenous people. A study by Darroch and colleagues (2017) examined the position statements and policies of health care associations in Canada and the U.S. and found that most Canadian sources included references to cultural safety, while comparable U.S. health care associations focused on cultural sensitivity and cultural competency. 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How would you describe your religious affiliation? □ Christian (including Catholic, Mormon, and Jehovah’s witness) □ Jewish □ Muslim □ Spiritual □ Agnostic □ Atheist □ Other, please specify: _________________________     204 7. What is your highest level of education? □ Less than high school; last grade finished: ______________________ □ High school graduate □ Some college □ Technical school □ Associate degree □ Bachelor’s degree □ Some graduate school □ Graduate or professional degree  8. Are you currently, or were you ever part of the U.S. military? □ Yes □ No 9. How long did you serve in the military? □ _________ years □ Not Applicable 10. What is your current work status? □ Employed full-time; current occupation: ____________________________________ □ Employed part-time; current occupation: ___________________________________ □ Retired; previous occupation: ____________________________________________ □ Homemaker □ Self-employed □ Unemployed □ On disability   205 11. What is your estimated yearly household income? [Say options, if needed] □ Less than $20,000 □ $20,000 to $29,999 □ $30,000 to $39,999 □ $40,000 to $49,999 □ $50,000 or more 12. How many people currently live with you full time? Who are they? ____________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ Regional / Logistic Information Questions 1. What zip code do you live in? _______________________ 2. Indicate the size of the largest town within 10 miles of your home. [Say options] □ Very Large city (500,00 or more residents) □ Large city (100,000 to 499,999 residents) □ Medium-sized city (50,000 to 99,999 residents) □ Small city (20,000 to 49,999 residents) □ Town (5,000 to 19,999 residents) □ Rural (fewer than 5,000 residents)     206 3. What is your primary mode of transportation for everyday activities like going to the store? a. By foot / walking b. Public transportation c. Driving myself d. Getting a ride with someone else 4. Approximately how far away is the nearest grocery store from where you live? ______________ miles 5. Approximately how long does it take to get to the nearest grocery store from where you live?  ______________ minutes 6. Approximately how far away is the nearest hospital from where you live?  ______________ miles 7. Approximately how long does it take to get to the nearest hospital from where you live? ______________ minutes Health Information Questions 1. How would you rate your health?  □ Poor □ Fair □ Average □ Good   □ Excellent     207 2. Have you ever been diagnosed with any of the following? Please select all that apply □ Heart problems or clogged arteries □ Cardiovascular disease and/or stroke □ Osteoporosis and/or arthritis □ Diabetes □ Cancer □ Parkinson's Disease □ Dementia or Alzheimer's Disease □ Autoimmune disease, such as Lupus or Multiple Sclerosis □ Vision problems, other than nearsightedness or farsightedness □ Hearing problems □ Asthma  □ Chronic Obstructive Pulmonary disease (COPD) □ Depression □ Anxiety □ Other physical illness; please specify: ___________________________________ □ Other mental illness, please specify: ____________________________________ □ None  3. Do you currently have health insurance? Yes / No (Prompt, if needed: Medicare/Medicaid count)   208 Qualitative Interview Questions 1. Think of a positive interaction you had with a health care provider (e.g., a doctor, nurse practitioner, physician assistant, or other primary care provider). What made this experience positive? If the participant is referring to a time where their MEDICAL treatment went well, ask “What about the health care provider made that interaction positive?  2. Think of a negative interaction you had with a health care provider (e.g., a doctor, nurse practitioner, physician assistant, or other primary care provider). What made this experience negative? If the participant is referring to a time where their MEDICAL treatment went poorly, ask “What about the health care provider made that interaction negative?  3. Have you ever experienced unfair or disrespectful treatment while receiving medical care based on one or more aspects of your background and/or identity (e.g., gender, age, race, ethnicity, skin color, body size, etc.)? Probe: If yes, what happened? How did you feel? / If participant says no, follow-up with “So, you feel that your health care providers practice fair and respectful treatment?   4. Have you ever had an experience with a health care provider that discouraged you from seeking treatment later? Probe: If yes, how so? / What happened? / For example, has poor treatment by a health care provider prevented you from seeking treatment from them again?  5. Has a health care provider’s treatment of you ever influenced your decision to follow their treatment recommendations? Probe: If yes, how so? / For example, has poor treatment by a health care provider prevented you from following their treatment recommendations?   209  6. Do you trust the U.S. healthcare system as a whole? Probe: What lead you to feel that way?  7. Do you trust your primary health care provider? Probe: What lead you to feel that way?  8. Have feelings of mistrust in the healthcare system or a specific health care provider ever influenced your decision about whether to get a specific medical procedure? Probe: Please describe that experience.   9. Have feelings of mistrust in the healthcare system or a health care provider ever influenced your decision about whether to follow specific treatment recommendations? Probe: Please describe that experience.  10. Where do you get information about health and medical treatments? Probe: If they indicate they get their information from another person, ask “Do you know where they get their information?”  11. Have you ever received information from a health care provider that was unclear? Probe: What was it for?  12. Would you feel comfortable telling a health care provider if you did not understand their directions? Probe: Why or why not?    210 13. Have you ever received information or recommendations from a health care provider that you disagreed with? Probe: What was the information/recommendation?  14. Would you feel comfortable telling a health care provider if you did not agree with their directions? Probe: Why or why not?  15. What can health care providers do to better communicate with you about your health? If participant says that their providers already communicate well, ask what their providers do to encourage clear communication?  16. When you experience a health issue, what steps do you normally take to help resolve the issue? Probe: If participant does not mention seeking professional care at all, ask “At what point do you feel like medical assistance is necessary?”  17. Have you ever had an experience where you were having a health issue but chose not to seek medical treatment? Probe: If yes, what got in the way? What did you do instead?  18. How has COVID-19 impacted your experiences with health care?     211 Rapid Estimate of Adult Literacy in Medicine—Short Form (REALM-SF)  Suggested Introduction:  "Providers often use words that patients don't understand. We are looking at words providers often use with their patients in order to improve communication between health care providers and patients. Here is a list of medical words.  Starting at the top of the list, please read each word aloud to me. If you don’t recognize a word, you can say 'pass' and move on to the next word."  Interviewer: Give the participant the word list. If the participant takes more than 5 seconds on a word, say "pass" and point to the next word. Hold this scoring sheet so that it is not visible to the participant.      212  Scoring (word list for participants on following page)   _____   Behavior    _____   Exercise _____   Menopause _____   Rectal  _____   Antibiotics _____   Anemia _____   Jaundice         213 Behavior    Exercise Menopause Rectal  Antibiotics Anemia Jaundice        214 APPENDIX B REFLEXIVE JOURNAL ENTRIES  215 Written by (your name): [Principal Investigator]   Participant ID: 01*  What are some possible themes that came up? Some possible themes were “good doctors listen,” “good doctors spend time with you,” “good doctors can admit when they need to get more information,” “bad doctors just want to get paid,” “sexism,” “preferring a female doctor,” and “using home remedies when possible.”  What were some of your thoughts and feelings at the time of the interview? I was a little nervous because this was the first interview I conducted for my dissertation. Once the interview began, I started to feel less nervous.  What are some of your assumptions or sources of bias? I was surprised by how few negative experiences this participant reported because I, personally, have had several. This participant also has high health literacy and clearly does research on her own health symptoms, possible solutions, and treatment recommendations given to her by her doctor. She also indicated a high level of self-advocacy and comfort speaking with her health care providers that many people I know have struggled to exercise.  How might these assumptions or biases influence your perception of possible themes? I had some difficulty with figuring out how to probe for more information without it being leading in some way. I used some reflection to clarify that I was understanding what she was saying and making sure I got further details even if they were counter to my assumptions.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  I think an additional theme related to communication with health care providers may include something like “advocating for yourself” and/or “doing your own research.” *Participant was excluded from the final analyses due to being younger than 55 years old.    216 Written by (your name): [Research Assistant]    Participant ID: 02  What are some possible themes that came up? I noticed that this participant had more positive things to say about our healthcare system. I also noticed a theme from the previous interview that the bad experiences did not stop the participants from seeking medical attention. I also noticed participants do their own research.  What were some of your thoughts and feelings at the time of the interview? I tried to go in with an open mind and I felt that I could’ve gotten more out of the interview if I took my time. I noticed I went a little fast and maybe did not explain some questions as good as I could have. I also felt like maybe I talked a little too low so the participant could not always hear me clearly. These are things I noticed I needed to work on. I was also a little nervous because this was my first time conducting an interview.  What are some of your assumptions or sources of bias? Although I mentioned before I try to go in with an open mind, I still always assume the participants will report awful experiences they had with the healthcare system. I guess I assume this because my own and my relatives’ experiences haven’t been the most positive. And the literature certainly leans in the direction of more negative experiences being the norm.  How might these assumptions or biases influence your perception of possible themes? I feel as though these assumptions I have make it surprising when I hear mainly positive responses. What I am expecting is different from what I’m getting. Although the responses have mainly been positive so far, I still expect some participants to report some more negative experiences.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  Keeping those assumptions in mind, I still expect there to be a variety of answers from participants. I do still expect some participants to have negative experiences that influence how they see our health care system. I also have to keep in mind not everyone’s experiences will be what I expect, and I am learning that with each interview.    217 Written by (your name): [Principal Investigator]  Participant ID: 03*  What are some possible themes that came up? Openness of communication, comfort with advocating for your own health, taking health issues seriously, and trusting health care providers to be helpful.  What were some of your thoughts and feelings at the time of the interview? This participant reported that they had mostly positive experiences and was very open about expressing his willingness to talk to his health care providers.  What are some of your assumptions or sources of bias? My most obvious source of bias is that I was anticipating people having previous negative experiences with health care. For starters, the extant research suggested that would be likely, but I have also had my own negative experiences, so I was surprised when people did not report having any.  How might these assumptions or biases influence your perception of possible themes? It certainly has me scratching my head a little bit because my expectations certainly were not met during this interview. I just want to make sure I do not read into this participant’s words looking for some secret negative between the lines of their reported positive experiences. I also want to make sure that I do not take away their power by failing to acknowledge how they obviously advocate for their own health, and this has likely had an influence on how positive their experiences have been.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No change. The very clear themes that were repeated across the interview was the importance of advocating for one’s own health and feeling empowered by doing so. *Participant was excluded from the final analyses due to being younger than 55 years old.    218 Written by (your name): [Principal Investigator]  Participant ID: 04  What are some possible themes that came up? Possible themes included “good doctors are nice/kind, friendly, and having good communication,” “bad doctors are dismissive/make assumptions,” “the healthcare system is only sort of trustworthy because of a lack of care,” and “trust having a long relationship with your provider.”    What were some of your thoughts and feelings at the time of the interview? I was surprised by how positive her experiences were overall. Other than that, there were no specific thoughts or feelings other than wanting to make sure I probe for more information without being leading.  What are some of your assumptions or sources of bias? This participant had mostly positive experiences with her health care providers, which I am aware is my own bias is opposed to because of some of my own experiences.   How might these assumptions or biases influence your perception of possible themes? I just need to continue to make sure I do not have confirmation bias in my interviewing style. I want to make sure I am not challenging participant reports just because their responses are unexpected. Peer debriefings and self-auditing can help with the final product as well.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The possible themes remain the same. I also just generally noticed that more trust is extended to one’s provider (a person) compared to the system. The major difference appears to be that the more personal element allows for a better sense of caring about patients as people not numbers.      219 Written by (your name): [Principal Investigator]  Participant ID: 05  What are some possible themes that came up? Some possible themes were “good communication,” “not doing anything unnecessary,” “preference for a doctor that was about the same age as the participant,” “trust built on a long relationship,” “trust being extended to the provider but not the system,” “putting faith in God,” and “taking health seriously.”  What were some of your thoughts and feelings at the time of the interview? I was really amazed by how long the patient-provider relationship was for this participant. She has been seeing the same doctor for longer than I have been alive! No wonder she trusts him. She also said “not yet” when asked about disrespectful treatment and acknowledged that it was something that could happen at some point with some provider. She also reported that she has heard that anti-Black racism can happen in healthcare settings, white doctors giving Black folks shots they do not need, which brought the history of medical wrongdoings described in the introduction.  What are some of your assumptions or sources of bias? This participant has also reported mostly positive experiences which as stated in other entries is surprising to me. I was also interested in the faith-based element because I was aware of it might be something of a theme, based on some literature, but it is not something that I personally relate to.  How might these assumptions or biases influence your perception of possible themes? I will probably be saying this a lot, but just continuing to be open to people’s responses is the goal. I’m just approaching codes and themes with an open mind and if people have mostly positive experiences, then that is wonderful, if a bit surprising.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. It was just interesting that this participant commented on how she’s aware poor treatment can happen, but she has had only positive experiences and obviously takes her health very seriously.   220 Written by (your name): [Principal Investigator]  Participant ID: 06  What are some possible themes that came up? Possible themes include “good doctors provide good health recommendations/send for the correct tests/send to the correct specialists,” “negative experiences include having to wait to receive care, or treatments not working,” “preference for in-person appointments,” “doing one’s own research,” “agism/assumptions made based on age,” and “patients are experts on their own experiences.”  What were some of your thoughts and feelings at the time of the interview? I find it really interesting when participants acknowledge that bad experiences can happen, but they haven’t happened to them. I do get curious if they really have not had negative experiences or if it is just more comfortable to acknowledge that is something that happens to other people (for example, research has shown that women are more likely to report that they know a woman who has been sexually harassed than they are to report that they personally have experienced it).  What are some of your assumptions or sources of bias? Per my previous remarks, I need to be careful not to read into participant responses. The code generation will thankfully be based fully on their own words and theme generation may reflect larger topics, but I will be careful about my biases. These topics could be further explored in the discussion section though.  How might these assumptions or biases influence your perception of possible themes? Again, I just need to make sure I do not have confirmation bias. Self-reflection like this is an important part of the process.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary.     221 Written by (your name): [Research Assistant]   Participant ID: 07  What are some possible themes that came up? This participant had positive and negative experiences when it came to the healthcare system. The participant stated that the health care provider always made sure to work with them. The negative experience was some health care providers had nasty attitudes.  What were some of your thoughts and feelings at the time of the interview? Some thoughts that came up during this interview were that the participant was able to experience the positive and the negative experiences when it came to the healthcare system. This participant had a view of both perspectives.  What are some of your assumptions or sources of bias? A bias that occurred was since she was an African American female and talked about more positive experiences than negative experiences is that she would have had an enjoyable experience. However, she stated that some of the healthcare visits were negative.  How might these assumptions or biases influence your perception of possible themes? These assumptions might influence my perception of possibility because not all health care providers treat African American people the same. Regardless of their conditions and if they can afford it or not.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  This does not change my perception about African American in the healthcare system, but it is proven that not all of their visits or good and bad.      222 Written by (your name): [Research Assistant]   Participant ID: 08*  What are some possible themes that came up? The possible themes were that the participants had mixed experiences with the healthcare system. The participants experience mostly pleasant experiences but only experience a few bad experiences depending on their situation at the time.  What were some of your thoughts and feelings at the time of the interview? The thoughts I had during the interview were that the participant will experience mostly good experiences because they appeared oriented and acknowledgeable about her health.  What are some of your assumptions or sources of bias? A bias that I had during the interview that the participant will have some negative experiences because they seemed very outspoken and appeared to have a blunt personality.  How might these assumptions or biases influence your perception of possible themes? This assumption influenced my perception of the possible themes because of the participant's environment and how they stated they behaved when they had a bad experience with the healthcare system.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  My perception has changed because this participant may have influenced the health care provider to behave in a negative way depending on their first impression given. However, not all health care providers give African Americans a bad experience. *Participant was excluded from the final analyses because they declined to be recorded; no qualitative data was available.      223 Written by (your name): [Research Assistant]    Participant ID: 09  What are some possible themes that came up? Some themes that came up were “diagnosing the correct element” and “I left one doctor to get a second opinion and then when I tried to return, they did not accept me back, that was a bad experience.”  What were some of your thoughts and feelings at the time of the interview? Some thoughts and feelings I had during this interview were that this was a learning experience for me. This participant seemed very honest and passionate about the healthcare experience.  What are some of your assumptions or sources of bias? I was very interested in listening to what this participant had to say because. He was an older African American male. Throughout the history of African American males. It would seem as if they would get treated very poorly in today’s healthcare system. This participant got to experience negative and positive during his visits.  How might these assumptions or biases influence your perception of possible themes? These assumptions influence my perception because it kind of supports my biases. However, I not everyone in the healthcare system is determined to give African American males a negative experience. Some actually want to help.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  Some things that have changed as more and more people who experience negative visits in the healthcare system are speaking out and becoming more open about it.       224 Written by (your name): [Research Assistant]    Participant ID: 10*  What are some possible themes that came up? Some themes that came up were that this participant had an enjoyable experience with health care. The health care provider gave them insurance to help cover their needs.  What were some of your thoughts and feelings at the time of the interview? The thoughts and feelings that occurred during this interview are that since this participant was a woman and was educated, I figured she would not have an issue with the healthcare system. This is because people that are usually educated get more respect for the healthcare system.  What are some of your assumptions or sources of bias? Some bias I had was that being educated will always get you more respect in the healthcare system. Although this participant had positive experiences it does not mean anyone else educated will.  How might these assumptions or biases influence your perception of possible themes? These biases influence my perception of possible things because everyone can experience their healthcare visits differently. Education or not you will have either a positive or negative experience.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  A possible theme is that not all African Americans have a negative experience when it comes to healthcare visits. It all depends on who the health care provider is. *Participant was excluded from the final analyses due to being younger than 55 years old.     225 Written by (your name): [Research Assistant]  Participant ID: 11  What are some possible themes that came up? I noticed that this participant stated mostly positive experiences with the healthcare system. I also noticed that the participant focused more on how the treatment went rather than how they were actually treated by the health care provider.  What were some of your thoughts and feelings at the time of the interview? I felt as though maybe the participant did not fully understand some of the questions, so they just avoided it by saying no. I also was surprised by the positive responses about their experiences with health care providers.  What are some of your assumptions or sources of bias? I felt as though the interview was rushed because the participant maybe wanted to get the interview over with. I also feel that it might have been rushed due to them just wanting the gift card.   How might these assumptions or biases influence your perception of possible themes? I feel my biases make it difficult for me to consider that maybe the participant did only have positive experiences. I also feel that there is a possibility that the participant might not be comfortable sharing those negative experiences and simply wants to quickly finish the interview.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  Considering previous interviews, one of the themes that came up was mainly positive experiences with the healthcare system. I have not noticed much of a change.      226 Written by (your name): [Research Assistant]    Participant ID: 12  What are some possible themes that came up? I noticed that this participant also had mostly positive experiences with health care providers. I noticed that things like “they treat me good” comes up a lot. I also noticed that they said, “the way they treat me is good.”  What were some of your thoughts and feelings at the time of the interview? I felt the participant did not fully understand the questions. I had to break the questions down to where they could understand them.   What are some of your assumptions or sources of bias? I did not have any assumptions or bias towards this particular interview. I do feel as though, as I stated before, that maybe the participant did not understand the questions fully.  How might these assumptions or biases influence your perception of possible themes? I think the participants mainly answered with positive experiences because they might not have felt comfortable expressing their negative experiences. I also think they answered no to most of the questions because they did not understand the question.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  Some possible themes could be them having mainly positive experiences and not focusing on the negatives to get through the interview quicker. I am not saying this is the case, but it is a possibility.       227 Written by (your name): [Research Assistant]    Participant ID: 13*  What are some possible themes that came up? I noticed that they mainly focused on “good news” they received from the doctor not necessarily the treatment from the doctors. They also mentioned they have never received negative treatment.  What were some of your thoughts and feelings at the time of the interview? I felt as though I might not have been explaining the questions in the best way. I also felt that maybe I could do a better job of explaining the questions to where the participant can understand.   What are some of your assumptions or sources of bias? I assumed that the participant would have had a negative experience, but from previous interviews I have to change my assumptions about that. Not everyone will have a negative experience.  How might these assumptions or biases influence your perception of possible themes? It surprises me when I hear that they have only had good experiences and I always expect a different answer. I am hoping the participant has actually had good experiences and not just telling me they were good to get the interview over with.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  So far, all the participants I have interviewed have had positive experiences. I am still keeping an open mind to those who may have not experienced the same thing. Overall, I think most of the participants will have had positive experiences.  *Participant was excluded from the final analyses due to being younger than 55 years old.     228 Written by (your name): [Principal Investigator]  Participant ID: 14  What are some possible themes that came up? Some possible themes are that “good doctors are friendly,” “negative experiences occur when healthcare is slow,” “doctor being the primary source of information.”  What were some of your thoughts and feelings at the time of the interview? After the first question (see below), I realized I needed to be a bit more careful with how I used reflective listening because I do not want to accidentally give people responses, so I was trying to keep that in mind for other questions. I also failed to ask two of the follow-up prompts. I think sometimes the community center setting makes me feel like I need to rush.  What are some of your assumptions or sources of bias? With this participant, she was having a hard time with the question about positive experiences with a health care provider (mostly responding about it being a good experience because the results were good), so I provided examples of things the provider might being doing well, and she repeated one of them. In hindsight, she may have agreed with me, but I also may have given her a response, so that could be some confirmation bias on my part.  How might these assumptions or biases influence your perception of possible themes? Again, I just want to make sure I do not lean towards confirmation bias. It’s possible she may not have described her doctor as “friendly” if I had not responded the way I did. That said, I also do not want to assume she would not have said it, either.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  I do not think a change is warranted. Responses will be considered in the context of the full interview and the rest of the data set.      229 Written by (your name): [Research Assistant]   Participant ID: 15  What are some possible themes that came up? The possible themes that came were that this participant has had mostly all successful experiences when she visited someone in the healthcare system. She was very soft-spoken, and she stated that she has never had a bad experience while checking on her health.  What were some of your thoughts and feelings at the time of the interview? My thoughts and feelings during the interview were that the participant was rushing the interview to get a reward when it completed. However, I believe that the participants really did have good experiences with the healthcare system.  What are some of your assumptions or sources of bias? Some biases I had I that she a had good experience because she is a female and health care providers supposedly treat African Americans females better than males.  How might these assumptions or biases influence your perception of possible themes? This assumption has influenced my perception because this most of the African American females have a good experience with healthcare system.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  This has not changed my perceptive with anything but not all African Americans negative experiences all the time in the healthcare system.        230 Written by (your name): [Research Assistant]     Participant ID: 16  What are some possible themes that came up? I noticed that the participant said, “it went good” and did not really expand on what exactly was good.  What were some of your thoughts and feelings at the time of the interview? I was a bit intrigued by this interview because this participant actually had a negative experience with a health care provider.  What are some of your assumptions or sources of bias? I assumed this participant was not being heard by her health care providers. She stated to them several times that she was hurting or in pain. The health care providers chose to somewhat ignore her concerns.  How might these assumptions or biases influence your perception of possible themes? My assumptions could influence how I view the participants’ experiences as a whole. I usually expect them to elaborate and be more in depth about their experiences, but they usually just tell me they’ve always been treated nicely so expected the same from this participant.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  This participant’s experience differed a lot from previous interview experiences. She stated that she was charged a total of $25 just to reschedule an appointment along with her concerns being ignored by her healthcare professionals.      231 Written by (your name): [Principal Investigator]   Participant ID: 17  What are some possible themes that came up? Some possible themes were “good doctor’s treat you nice,” “trusting the healthcare system because you have not had any problems so far,” “communication is already good because they are respectful and take time.”  What were some of your thoughts and feelings at the time of the interview? This participant had a slightly raspy voice. I was thinking early on that I wanted to keep a balance of getting a little closer, so I could hear her better while also maintaining social distancing as much as possible. She also needed questions rephrased a few times and there were a couple times where I missed opportunities to probe a little deeper.   What are some of your assumptions or sources of bias? I am always a little surprised when participants do not report any negative experiences. I also sometimes wonder when participants who need questions rephrased for them say that they have never received unclear information from their doctors.  How might these assumptions or biases influence your perception of possible themes? The whole point of these journals is just to keep self-reflecting. For example, it’s entirely possible that this participant’s doctors just do a really great job of communicating with her.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary at this time.      232 Written by (your name): [Research Assistant]   Participant ID: 18  What are some possible themes that came up? The possible themes were that the participant usually has great experiences during her healthcare visits. The participant stated she has never had an unpleasant experience and that she usually has kind health care providers.  What were some of your thoughts and feelings at the time of the interview? My thoughts and feelings during the interview were that the health care provider she visits has a kind heart and that she genuinely cares about her patients. Regardless of their skin color and age.  What are some of your assumptions or sources of bias? I believe some biases I have for this participant was she was treated well because of the she stated she was a female nurse practitioner and females tend to be kind to other females.  How might these assumptions or biases influence your perception of possible themes? These assumptions influence my perception because now I will think that this is why some health care providers allow a pleasant experience.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  This changed my bias because it added more to what I already believed with the attitudes and personality of the health care providers.      233 Written by (your name): [Research Assistant]    Participant ID: 19*  What are some possible themes that came up? I noticed that the questions were not fully understood, and the participant answered “no” or “yes” to a lot of the questions.  What were some of your thoughts and feelings at the time of the interview? I felt that a lot of the answers I was getting were quick and not really fully elaborated on. The interview felt sort of rushed.  What are some of your assumptions or sources of bias? I had no particular assumptions or bias during this interview except for the fact that it felt rushed.  How might these assumptions or biases influence your perception of possible themes? Considering other interview experiences, I assumed they have always had positive experiences.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  I noticed, considering other interview experiences, that their overall experiences were positive. *Participant was excluded from the final analyses because responses were provided by a loved one or caretaker.     234 Written by (your name): [Principal Investigator]  Participant ID: 20  What are some possible themes that came up? The only theme that this participant was really clear on was that “health care providers can improve communication by take time and explain things thoroughly to you.”  What were some of your thoughts and feelings at the time of the interview? The further I got into this interview, the more I worried about this participant’s cognitive ability. He seemed to follow along and understand the consent process, but as we got into the qualitative questions, he seemed to lose track of what we were talking about sometimes, so I am not sure if some of his responses are an accurate representation of his actual opinions or experiences about health and healthcare or not. He also just hinted at having had a really hard life, which pulled at my clinician heart strings a bit.  What are some of your assumptions or sources of bias? It sounded like this participant had not gone to a doctor in quite some time. I wish I had asked for a specific time since his last appointment or something. I also recognize that due to his age and difficulty understanding questions my mind immediately jumped to possible dementia/cognitive impairment, when it could be something like literacy because this participant only completed the fifth grade.  How might these assumptions or biases influence your perception of possible themes? As always, I need to make sure I do not fall into confirmation bias. For this participant, I will only code for times where his wording clearly indicated that he understood the question (instead of possibly answering a different question based on his understanding).  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes necessary at this time, but I will make sure to be careful not to read into unclear responses.     235 Written by (your name): [Research Assistant]  Participant ID: 21  What are some possible themes that came up? The participant needed an assistant to help him answer the questions. However, the participant shared that he has great experiences while visiting the healthcare system. He also stated that he has someone to go with him so he can understand the health care provider regarding his treatment.   What were some of your thoughts and feelings at the time of the interview? My thoughts and feelings at the time were that he used an assistant to help him understand and have a witness present with him for every visit. It will minimize any confusion between the patient and the health care provider.  What are some of your assumptions or sources of bias? My assumptions were since he was an elderly man, he uses assistant to help him understand and the health care provider will have no choice but to offer an excellence regarding any questions or concerns about his healthcare.  How might these assumptions or biases influence your perception of possible themes? This assumption influenced my bias because when there are more people around it will be easier to report suspicious behaviors.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  Even though he stated that he has always had an enjoyable experience it shows that some health care providers have respect for African Americans. Not everyone in the healthcare system is bad but it has been more negative experiences than positive experiences.      236 Written by (your name): [Principal Investigator]  Participant ID: 22  What are some possible themes that came up? Possible themes were “good doctors follow-up on concerns, do necessary tests, and are available to address questions,” “bad doctors act like they do not care,” “racism,” “doing your own research,” and “improving communication through initiating more follow-up appointments.”  What were some of your thoughts and feelings at the time of the interview? I really appreciated that this participant was obviously giving the questions a lot of consideration and provided candid answers. This was possibly my longest interview so far, and I really appreciated the depth of information she provided with almost no prompting needed. So, it felt much easier overall.  What are some of your assumptions or sources of bias? In this case, my biggest bias was that due to the time this participant spent with me, and her candid descriptions of her positive and negative experiences, I felt like she was more honest or at least much more open than some of the other participants. Part of that is probably my bias as someone who has had negative experiences with a provider, so people who also report them at least initially feel more honest to me.  How might these assumptions or biases influence your perception of possible themes? In this case, the participant’s responses were more in line with my expectations and bias, so it is just important to make sure that I do not read too far into it or fail to include the nuance and context that this participant so generously provided.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary at this time.      237 Written by (your name): [Principal Investigator]  Participant ID: 23  What are some possible themes that came up? Some possible themes that came up were “asking for clarification so you can understand what is going on with your health” and “go straight to the doctor when you have a health issue.”  What were some of your thoughts and feelings at the time of the interview? I was a little worried about whether this participant was fully understanding the questions. He also reported it had been many years since his last appointment with a provider, so that has me a little worried about accuracy due to having to remember something that happened a long time ago. Thankfully, one of the community center volunteers helped me get the questions across to this participant better. That said, I have concerns that the questions eventually were so simplified, that the information provided is not the richest. Much of the time it boiled down to close ended questions, which is not ideal.  What are some of your assumptions or sources of bias? I was surprised by how much this participant struggled with the questions, which I think points to some bias about age and education. He was about the average age of most participants and had completed high school, so my assumption would have been that he would not struggle with understanding as much, which is a pretty obvious bias based on privileges that I have had (access to a good education). Another source of bias, if a bit backed by research, is this is my second participant who has not been to a health care provider in quite some time, and both of them were men.  How might these assumptions or biases influence your perception of possible themes? In this case, because of some of the modifications that were made, it just might not be possible to generate themes for some questions.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The themes described above are still reasonably intact.      238 Written by (your name): [Principal Investigator]  Participant ID: 24  What are some possible themes that came up? Possible themes included “positive experiences with healthcare include professionalism and being provided clear information,” “negative experiences involve a treatment not working and feeling like the provider is not listening to patient concerns,” “half-and-half trust in the healthcare system based on experiences with medications,” and “feeling comfortable discussing things with a provider.”  What were some of your thoughts and feelings at the time of the interview? I thought this participant reported an interesting variety of experiences with healthcare. I was also thinking about how he was not the first participant to indicate that he has been going to the same primary care provider for several years.  What are some of your assumptions or sources of bias? No specific assumptions came up based on the variety of experiences this participant reported, but I did notice a source of bias I had when he was talking about ways of improving communication. He indicated that a routine, weekly phone check-in would be helpful, and my bias was that this is one thing that being a therapist has over being a doctor. Unless I get no-showed, I see people weekly. But with the current state of the medical system, you would have to have employees whose only job was weekly check-ins. There is just no way to keep up with that many patients that frequently.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.     239 Written by (your name): [Principal Investigator]  Participant ID: 25  What are some possible themes that came up? Possible themes included “positive experiences involve being provided thorough information, even if the situation is negative,” “trust in the healthcare system based on positive/lifesaving experiences,” “trust in a provider based on them checking in on you,” and “improving communication through providers following up with patients.”  What were some of your thoughts and feelings at the time of the interview? With this participant, I began to notice a trend between his responses and some from other participants that comfort with communicating not understanding or disagreeing with medical recommendations seems to often be attributed to characteristics of the participant/patient (e.g., “that’s just who I am,” “I am just an honest person”).  What are some of your assumptions or sources of bias? Again, I tend to be a bit surprised whenever a participant reports that they have never had a negative experience with a provider or that they have not experienced any discrimination from providers both because of personal experience and because the literature would suggest that this is a common occurrence.   How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      240 Written by (your name): [Principal Investigator]  Participant ID: 26  What are some possible themes that came up? Possible themes include “good health care providers will check in on you and see how you are doing,” “trust in the healthcare system based on having only positive experiences,” “feeling comfortable speaking with medical professionals because you want to know what is going on with your health before making decisions,” and “communication could be improved through check-ins.”  What were some of your thoughts and feelings at the time of the interview? I noticed some common themes with other participants as I was interviewing this participant. For example, many participants have only reported positive experiences and have indicated that they base their trust in the healthcare system on the fact that they have only had positive experiences. I also found it interesting that he responded to the question about discrimination with “not yet.”  What are some of your assumptions or sources of bias? As has often been the case, I continue to be surprised by the lack of negative experiences or discrimination, as well as the trust placed in the healthcare system as my own personal bias is very opposed to that.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias. I will have participants’ responses in front of me, in their own words, so the trick will probably have more to do with not misinterpreting or misrepresenting those results when generating themes and creating the final report.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.     241 Written by (your name): [Principal Investigator]  Participant ID: 27  What are some possible themes that came up? Possible themes included “good doctors take their time and are thorough,” “it is important to communicate with doctors so that everyone is on the same page,” “having mixed trust in the healthcare system because some doctors are good and others are going to rip you off,” and “hesitance about a medical procedure not because of the doctor or healthcare but simply because the procedure itself is scary.”  What were some of your thoughts and feelings at the time of the interview? I was a little worried for this participant because based on his report, it sounds like he has put off getting a medical procedure for a little while now, but obviously I have no business telling him what to do, so I did not react beyond the normal prompts for getting at attitudes related to health and healthcare that are part of the study. I hope he gets it taken care of.  What are some of your assumptions or sources of bias? This interview was a case where the participant’s answers were more in line with my expectations (assumptions), so I want to make sure I do not read into the responses based on my own bias rather than the participant’s report in their own words.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      242 Written by (your name): [Principal Investigator]  Participant ID: 28  What are some possible themes that came up? Possible themes included “good health care providers are friendly and cheerful,” “bad health care provider will be dismissive and not listen to you,” “trust in the health care system based on positive experiences with one’s providers,” and “it’s important to communicate with providers so that you are an active participant in your own health care.”  What were some of your thoughts and feelings at the time of the interview? My initial thoughts, knowing that I was matched for internship at a VA and with this participant being a veteran was just that I would be a part of caring for people like this participant very soon. I also was just wondering about any potential issues with this participant being one of only two veterans in our sample, if VA care might be different, but if we are talking about healthcare as a system which the VA is certainly a part of, then I think it makes sense to include this information as well.   What are some of your assumptions or sources of bias? This participant had a variety of experiences with health care providers, so I found it interesting that he still had trust in the system based on his positive experiences. Up until now, there was more of a trend towards people who have not had any negative experiences reporting trust in the healthcare system.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      243 Written by (your name): [Principal Investigator]  Participant ID: 29  What are some possible themes that came up? Possible themes included “good health care providers a thorough,” “trust in the healthcare system based on the perception that they care about what I need,” and “feeling comfortable to discuss unclear recommendations or things you disagree with based on trust in the provider.”  What were some of your thoughts and feelings at the time of the interview? A couple of times I had a little bit of a harder time probing this participant’s responses. Sometimes she was vague, and I wanted to get more information, but I had to make sure that I was not leading in my probes based on my assumptions.  What are some of your assumptions or sources of bias? Like many participants, this participant reported that she did not have any negative experiences, had not experienced discrimination, and trusted the healthcare system, which is counter to my own assumptions and personal bias. So, again, I wanted to be very careful about how I probed for more information.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      244 Written by (your name): [Principal Investigator]  Participant ID: 30  What are some possible themes that came up? Possible themes include “trust in healthcare and health care providers on principle alone,” “doctors as primary sources of medical information,” and “good communication involves follow-up care.”  What were some of your thoughts and feelings at the time of the interview? This participant really struggled with the first two questions and kept explaining how the treatment was successful or not rather than the interpersonal experience with the health care provider. Eventually, I gave up on trying to probe any further because I was worried I would start asking leading questions.  What are some of your assumptions or sources of bias? The question response where I noticed the most internal bias coming up for me was her response about the health care system. She and a couple other participants expressed that they “had to” trust the healthcare system but could not necessarily explain why. Another participant said something to the effect of, “what other choice is there?” So, that, as previously noted in other reflexive journal entries, is an area where I have some obvious bias.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      245 Written by (your name): [Principal Investigator]  Participant ID: 31  What are some possible themes that came up? Possible themes included “the importance of being able to make informed decisions about one’s health,” “faith in God/prayer as a source of comfort and decision making with regards to health,” “positive experiences with health care providers involve free exchange of information,” and “doctors as primary source of medical information.”  What were some of your thoughts and feelings at the time of the interview? This was another participant who had an active health issue that he decided not to follow up on in terms of getting further testing. That made me a little worried about his wellbeing, but at the same time, a) he clearly expressed exactly why he chose the course of action he did, and b) it is not my decision, regardless. So, I just had to make sure I monitored my responses, especially since he asked if I agree with him. I took the diplomatic answer of “well, it’s your decision about your health,” which he seemed agreeable too.  What are some of your assumptions or sources of bias? As someone who is not particularly religious, I always find it interesting when people express that prayer or faith is an important part of their healthcare attitudes and choices. So, that is a source of bias from my perspective.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      246 Written by (your name): [Principal Investigator]  Participant ID: 32*  What are some possible themes that came up? Possible themes included “good doctors are knowledgeable, good at diagnosis, and care about their patients,” “trusting the healthcare system because you have never had a negative experience,” “comfort expressing opinions to doctors because ‘it’s my body’,” and “good communication includes breaking down more complex issues, keeping thorough charts so that the doctor remembers the history of the problem.”  What were some of your thoughts and feelings at the time of the interview? This participant had, like many participants, only positive experiences with her providers. While this continues to surprise me, I appreciated her detailed explanations of what was going well. She also was one of the first participants I have had to mention that her positive experiences with her provider were because her provider is knowledgeable. Most participants focused on a specific task (e.g., gave a good exam).  What are some of your assumptions or sources of bias? This interview was a case where the participant’s answers were more in line with my expectations, so I had to be careful in how I worded my follow up questions to avoid potentially leading the participant. I have had negative experiences with providers in the past, so I am always (pleasantly) surprised when participants report that they have not.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias. Furthermore, by this point, I am not as surprised when participants report having only positive experiences.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both individually and as a whole. *Participant was excluded from the final analyses due to being younger than 55 years old.    247 Written by (your name): [Research Assistant]   Participant ID: 33  What are some possible themes that came up? I noticed that the participant answered “no” or “they treat me nice” quite often.  What were some of your thoughts and feelings at the time of the interview? I felt as though the questions might not have been understood completely.  What are some of your assumptions or sources of bias? After the first question, I had a feeling as to where this was going. I assumed their answers would be mainly that they’ve had mostly positive experiences.  How might these assumptions or biases influence your perception of possible themes? Overall, from what I’ve witnessed with other interviews, I assume most participants that I’m interviewing are going to mention that they have had positive experiences.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  I have not noticed anything changing as far as themes. Overall, it seems like most people in this community have had positive experiences with the healthcare system and seem to trust their health care providers.      248 Written by (your name): [Research Assistant]    Participant ID: 34  What are some possible themes that came up? Similar to other interviews, the participants answered “no” to questions regarding them being treated negatively and “yes” to questions of them being treated positively.  What were some of your thoughts and feelings at the time of the interview? I expected the participant to have mostly positive experience based on previous interviews and the answers the participants provided.  What are some of your assumptions or sources of bias? I assumed that this participant was going to have mainly positive experiences with the healthcare system.  How might these assumptions or biases influence your perception of possible themes? My assumptions about participants having mainly positive experiences might affect me from keeping an open mind about other experiences. Although most of the participants have had mainly positive experiences, I do need to keep in mind that there are some who have not experienced the same thing.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The theme of positive experiences with the healthcare system is still a common finding. So far most of the participants have not encountered a negative experience.      249 Written by (your name): [Research Assistant]     Participant ID: 35  What are some possible themes that came up? Similar to other interviews, this participant also had positive experiences with the healthcare system. This participant focused mainly on him “feeling better” rather than how exactly he was treated.   What were some of your thoughts and feelings at the time of the interview? I felt as though this participant misunderstood some of the questions. I had to elaborate a little more about what exactly I was asking.  What are some of your assumptions or sources of bias? Similar to previous interviews, I expected this participant to also have had mainly positive interactions with the healthcare system.  How might these assumptions or biases influence your perception of possible themes? As I stated in a previous reflexive journal, I should not assume everyone will have positive experiences even if the majority of them have experienced positive interactions.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  As far as this interview goes, none of the themes have changed. Again, mainly positive experiences with the healthcare system.      250 Written by (your name): [Research Assistant]     Participant ID: 36  What are some possible themes that came up? I noticed that this participant answered “no” to not trusting the healthcare system as a whole. Also, he mentioned the health care providers “worry him to death” meaning they call him a lot.  What were some of your thoughts and feelings at the time of the interview? I felt that this participant provided really honest answers and was not afraid to state what he actually felt.  What are some of your assumptions or sources of bias? I assumed this participant would have trusted the US health care system as a whole but I was mistaken.  How might these assumptions or biases influence your perception of possible themes? I went in assuming this participant would have said yes to trusting the healthcare system, but he stated that it is actually unfair. I assumed from previous interviews that he would have said yes to trusting the healthcare system as a whole.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  As I stated previously, this participant did have overall positive experiences, but he did not fully trust the healthcare system. I expected these two things to go hand in hand, but I was mistaken. I should have not assumed everyone with positive experiences will trust the healthcare system.      251 Written by (your name): [Research Assistant]     Participant ID: 37  What are some possible themes that came up? I noticed this participant also had a positive experience and also replied with “They treated me good”.  What were some of your thoughts and feelings at the time of the interview? I felt this participant overall had a positive experience and would provide answers of them not having bad experiences.  What are some of your assumptions or sources of bias? As stated in previous journal entries, I feel this participant would provide answers along the bases of them having good experiences.  How might these assumptions or biases influence your perception of possible themes? I assume most of the participants will have good experience, but I am learning to keep an open mind when listening to participants’ experiences. Not everyone will experience the same treatment or have the same experience with the healthcare system.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  I noticed most of the themes have not changed along the lines of them being treated fairly by the healthcare professionals. I also noticed Covid-19 has not negatively impacted a lot of their experiences with receiving healthcare.      252 Written by (your name): [Research Assistant]  Participant ID: 38  What are some possible themes that came up? I noticed that this participant had good and bad experiences. This participant mentioned they did not want to be seen as a number or just another patient. They also mentioned they want a health care provider who makes them feel heard or actually consider their feelings.  What were some of your thoughts and feelings at the time of the interview? I really appreciated this participants answers. She elaborated on why she felt the way she did. I felt this participant was open and honest with her answers and the interview did not feel rushed.  What are some of your assumptions or sources of bias? I at first assumed this participant would also have a positive experience with the healthcare system, but I did make sure to keep my mind open to her experiences.  How might these assumptions or biases influence your perception of possible themes? Considering most of the participants’ experiences being positive, I was taken by surprise when she actually mentioned the negative experiences she had.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The theme of overall positive experiences did not necessarily change, but she did mention the negative experiences she had as well. I am still considering the possibility that not everyone who has had a positive experience has also might’ve encountered a negative one.       253 Written by (your name): [Research Assistant]   Participant ID: 39*  What are some possible themes that came up? This participant mentioned he did have a positive experience, but he also mentioned he felt the experience he had with the health care provider was “unprofessional.” He mentioned he felt disappointed about how he was treated.   What were some of your thoughts and feelings at the time of the interview? I did not expect this participant to answer the way he did. I appreciated his honest feedback on how he truly felt about the healthcare system.  What are some of your assumptions or sources of bias? I actually expected this participant to provide a negative experience based on how I was approached by the participant.   How might these assumptions or biases influence your perception of possible themes? Based on previous interviews, I expected mainly positive experiences overall. Although, I kept an open mind with this participant because I felt this participant would provide a different viewpoint than what I’ve heard previously.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  I noticed this participant also mentioned Covid-19 had no impact on him receiving healthcare. I also noticed this participant and a lot of other participants mentioned that communication was a key factor in receiving healthcare. They want their health care providers to listen to them and this participant actually had an experience where he did not feel heard, which is the case with many other participants.  *Participant was excluded from the final analyses due to being younger than 55 years old.     254 Written by (your name): [Research Assistant]    Participant ID: 40  What are some possible themes that came up? This participant also mentioned they have had positive interactions with the healthcare system. I noticed this participant also mentioned the aspect of communication. Communication seems to be a major theme among participants. This participant mentioned the health care provider explained things clearly and asked if she understood what they were saying.  What were some of your thoughts and feelings at the time of the interview? I appreciated this participant’s feedback because she explained what exactly made her experience positive.  What are some of your assumptions or sources of bias? I expected this participant to also have mainly positive experiences, but I was honestly shocked when she mentioned she has never had a negative interaction with a health care provider.  How might these assumptions or biases influence your perception of possible themes? As stated in previous journals, I have to remain open minded when listening to different participants’ experiences.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The theme of positive experiences has not changed much, but the aspect of clear communication from the health care provider seems to be a major influence of whether the experience with the health care provider will be a positive one or not.      255 Written by (your name): [Principal Investigator]  Participant ID: 41  What are some possible themes that came up? Possible themes included “good doctors can have serious conversations and provide thorough information,” “negative experiences with health care providers include having to jump through extra hoops to receive care,” “not trusting the healthcare system because of a mix of good and bad experiences,” and “feeling more comfortable expressing not understanding something compared to disagreeing with something that a health care provider has said.”  What were some of your thoughts and feelings at the time of the interview? I noticed she was a little hesitant to describe a negative experience she had, so I was sure to tell her she did not have to provide any specific details, but if she felt comfortable she could provide some adjectives to describe their behavior, and we landed on “rude” but not necessarily based on a specific form of discrimination, from her perspective.  What are some of your assumptions or sources of bias? As has already been said multiple times by now, I was expecting more reports of negative experiences, especially related to discrimination because I have experienced discrimination in my treatment before, but most reports so far, like with this participant, seem to be about general “rude” behavior.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      256 Written by (your name): [Research Assistant]  Participant ID: 42*  What are some possible themes that came up? This participant mentioned she could not think of a negative interaction she had with a health care provider. She also feels her health care provider actually considers her feelings.  What were some of your thoughts and feelings at the time of the interview? I felt this participant elaborated well with what she wanted to say and explained what exactly makes her experiences positive.  What are some of your assumptions or sources of bias? I had no assumptions or bias towards this interview. I felt very open and really appreciated how this participant was honest and open with her experiences.  How might these assumptions or biases influence your perception of possible themes? I had no assumptions or biases that would influence possibly themes.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The theme of mainly positive interactions has not changed nor did the theme of clear communication from health care providers. *Participant was excluded from the final analyses due to being younger than 55 years old.      257 Written by (your name): [Principal Investigator]  Participant ID: 43  What are some possible themes that came up? Possible themes included “good doctors are nice,” “bad doctors do not pay enough attention,” “trust in providers built through positive experiences,” and “communicating with providers in order to understand what is going on with one’s health.”   What were some of your thoughts and feelings at the time of the interview? This participant had another person with her, so I was just trying to make sure that I honored that while also trying to make sure the participant was able to answer for herself.   What are some of your assumptions or sources of bias? One thing that I had in the back of my mind was just making sure that the participant’s companion was not accidentally providing responses for the participant (like speaking before the participant and the participant echoing the response). I do not want to assume one way or another how the participant might have responded to questions when that happened.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      258 Written by (your name): [Research Assistant]  Participant ID: 44  What are some possible themes that came up? This participant, similar to others, also had an overall positive experience. The same theme applied along the lines of their primary health care providers taking the time to listen to their concerns. Also noting that Covid-19 has not impacted most participants receiving healthcare.  What were some of your thoughts and feelings at the time of the interview? I felt this participant overall had not had many negative experiences and overall trusted her health care providers.  What are some of your assumptions or sources of bias? I assumed, as with many other participants, that this participant overall had positive things to say regarding her interactions with the healthcare system.  How might these assumptions or biases influence your perception of possible themes? As stated before with many other participants, I have to keep an open mind and note that not everyone will have positive experiences with the healthcare system.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No current themes have changed along the lines of having an overall positive experience, having health care providers who actually listen to their concerns, and Covid-19 not seriously impacting how they receive healthcare overall.      259 Written by (your name): [Principal Investigator]   Participant ID: 45*  What are some possible themes that came up? Some possible themes are “trust related having a long relationship with the provider,” “good doctors are respectful, friendly, and caring,” “trust in the healthcare system related to good experiences with insurance,” “comfort communicating with provider based on trust from knowing their information is confidential,” and “getting clear information to make informed decisions about health.”  What were some of your thoughts and feelings at the time of the interview? This was the first time a participant expressed that knowing their health information is kept confidential was a source of trust, which was a really interesting point I had not considered before. It is also just always interesting as someone who has moved around a lot for my education to hear how long of a relationship some participants have had with their providers.  What are some of your assumptions or sources of bias? I have said this many times by now, but there is always some initial surprise when participants report that they have not had any negative experiences.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias. Furthermore, by this point, I am not as surprised when participants report having only positive experiences.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole. *Participant was excluded from the final analyses due to being younger than 55 years old.     260 Written by (your name): [Research Assistant]  Participant ID: 46*  What are some possible themes that came up? The same theme regarding how they were treated positively did not change. Also considering how the health care provider listened to their concerns. This participant noted both negative and positive experiences she faced. She explained in one of her experiences how the health care provider did not have good bedside manners. She also talked about how she stopped going to the doctor as much when Covid-19 became a major issue.  What were some of your thoughts and feelings at the time of the interview? I felt this participant was open and honest with her experiences. I feel she also explained well as to why those experiences were either positive or negative.   What are some of your assumptions or sources of bias? I had no prior assumptions or bias. I kept an open mind, so I was able to really consider the negative and positive experiences the participant had.  How might these assumptions or biases influence your perception of possible themes? As stated above, it helped me keep my mind open to all experiences. I have to consider that just because someone had a positive experience does not mean they also cannot experience a negative one.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The theme of overall positive experiences did not change, but participants also experienced some negative ones as well. The theme of Covid-19 impacting healthcare experiences did change because this participant did not want to go to her health care provider regarding the pandemic.  *Participant was excluded from the final analyses due to being younger than 55 years old.   261 Written by (your name): [Principal Investigator]  Participant ID: 47*  What are some possible themes that came up? Possible themes include “good doctors are respectful and communicate well,” “negative experiences are slow and have a lack of clear communication,” “trust based on the perception of the system providing care to everyone,” “reading news, media, online sources for medical information,” and “comfort with talking to providers so they better understand his perspective and get better information.”    What were some of your thoughts and feelings at the time of the interview? This participant just had a very calm, easy-going energy, which was just nice right at the beginning of the interview day. He also reported mostly positive experiences.  What are some of your assumptions or sources of bias? As has often been the case, this participant reported mostly positive experiences, which is counter to my own experiences. Also, because he had such a sort of calm energy to him, I wondered a little bit if he maybe has lower standards for what qualifies as a good experience. He just did not seem like the kind of person who would get upset by much, which is an obvious assumption based on just one interaction with him.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole. *Participant was excluded from the final analyses due to being younger than 55 years old.    262 Written by (your name): [Principal Investigator]  Participant ID: 48  What are some possible themes that came up? Possible themes included “written materials are helpful references to improve communication,” “not trusting the healthcare system because it is all about money,” “trusting providers because they explain things thoroughly,” and “not seeking medical treatment because it does not seem serious.”  What were some of your thoughts and feelings at the time of the interview? It was sort of funny talking with this participant because some of his responses towards the interview reminded me of some of my own experiences with my dad. For example, when he mentioned he was having a health issue and he thought he was fine, but his daughters came and took him to the hospital, I had a good chuckle because I have definitely been the daughter in that situation before.  What are some of your assumptions or sources of bias? This interview was a case where the participant’s answers were more in line with my expectations/bias, so I had to be careful how I worded my follow up questions to avoid potentially leading him in any way.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      263 Written by (your name): [Principal Investigator]  Participant ID: 49  What are some possible themes that came up? Possible themes include “positive experiences with healthcare include being helped and receiving appropriate testing,” “speaking with a doctor because health is important,” and “trust in the healthcare system based on own positive experiences.”  What were some of your thoughts and feelings at the time of the interview? This participant reported something that made me laugh pretty early on because it was said with a note of like “can you believe that?” which was that he had literally seen his doctor smoking. It is sort of funny how we expect our doctors to be pinnacles of good health before they go making any recommendations to us.  What are some of your assumptions or sources of bias? As has been pretty common, this participant reported mostly positive experiences, where I had definitely assumed most people would report at least one negative experience, even if it was something relatively mild. Another common theme I am noticing is that many participants, including this one, reported trust in the healthcare system based on feeling taken care of/not having any negative experiences, whereas my own bias is thinking of the system as almost completely separate from the care I receive from my providers.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      264 Written by (your name): [Principal Investigator]  Participant ID: 50*  What are some possible themes that came up? Possible themes include “good doctors are thorough and talk to you,” “negative experiences are related to cost,” “having sort of so-so trust in the healthcare system because of inconsistent information and cost coverages,” and “trust in providers based on provider advocating for their treatment to insurance companies”  What were some of your thoughts and feelings at the time of the interview? The participant framed many of his experiences as a literal cost-benefits analysis to make sure he knew what was covered and what was not. For example, positive experiences were framed based on having good insurance from his job and how that has made interactions more positive. This perspective absolutely made sense to me as someone coming from a lower middle-class background; I just thought it was interesting that this was such an obvious focal point.  What are some of your assumptions or sources of bias? As has often been the case, this participant reported mostly positive experiences, though I related more to the money side of things. So, I just reflected on how some of my experiences color how much a participant’s experiences “make sense” because those are the things I expect more of.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole. *Participant was excluded from the final analyses due to being younger than 55 years old.    265 Written by (your name): [Principal Investigator]  Participant ID: 51*  What are some possible themes that came up? Possible themes included “good doctors are friendly, helpful, and communicate well,” “bad doctors are not attentive to their patient’s needs,” “mistreatment possibly being the result of racism,” “not following recommendations because of negative side effects,” “mixed feelings of trust in the healthcare system based on positive and negative experiences with specific providers,” and “good communication means providers giving thorough, easy to understand information.”  What were some of your thoughts and feelings at the time of the interview? The information for this interview was provided by a loved one/caretaker of the participant, which was an interesting perspective to have because I think caretakers have unique insights into how healthcare can work because they often act as an advocate for their loved ones.  What are some of your assumptions or sources of bias? I suspect I have bias about the loved one/caretaker perspective because I have played this role for both of my older parents in the past. I have especially played that role because of expected agism in my mother’s care, so (as described above) I have this assumption that in some ways caretakers have better insight than the patient themselves.   How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole. *Participant was excluded from the final analyses due to being younger than 55 years old (and because information was provided by a loved one).    266 Written by (your name): [Principal Investigator]  Participant ID: 52*  What are some possible themes that came up? Possible themes include “positive experiences involve getting answers to medical concerns and providers being friendly,” “possible ageism leading to lack of testing,” “positive experiences leading to trust in the healthcare system,” “wanting a second opinion when patients encounter advise they do not agree with,” and “doing your own research to be better informed about your own health.”  What were some of your thoughts and feelings at the time of the interview? Once again, it was cool to get a loved one/caretaker’s perspective.   What are some of your assumptions or sources of bias? As with the previous participant, I suspect I have bias about the loved one/caretaker perspective because I have played this role for both of my older parents in the past. I have especially played that role because of expected agism in my mother’s care, so (as described above) I have this assumption that in some ways caretakers have better insight than the patient themselves.   How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole. *Participant was excluded from the final analyses because responses were provided by a loved one or caretaker.     267 Written by (your name): [Principal Investigator]  Participant ID: 53  What are some possible themes that came up? Possible themes included “good doctors are friendly,” “good communication involves just being honest,” “feeling like the healthcare system is good overall because of having only positive experiences, and “going straight to the doctor when you encounter a medical issue.”  What were some of your thoughts and feelings at the time of the interview? This participant reported that he had damaged vocal cords, and his voice was a bit hard for me to hear at times. I just had to make sure we maintained social distancing as best as possible with me still trying to make sure I could hear him reasonably well.  What are some of your assumptions or sources of bias? This participant had a little bit of a harder time responding to the first question about positive experiences and interpreted it as meaning the health outcome was positive. Eventually I offered him some adjectives to describe his provider, which may have been a bad call because it might have given him an answer he might not have otherwise provided. He chose “friendly” which was a common response, so his response to that question will probably not make or break anything in later theme development, but it still was probably not the best approach.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      268 Written by (your name): [Principal Investigator]  Participant ID: 54  What are some possible themes that came up? Possible themes include “communication is important,” “advocating for one’s own health,” and possibly “general lack of trust in the healthcare system without a specific cause.”   What were some of your thoughts and feelings at the time of the interview? This participant was very soft spoken, so at times I was worried that I was making her nervous. I tried to match her softer speech, but I am not sure it helped. In particular, she initially said she did not trust the healthcare system but then said she could not think of any particular reason why she did not trust it and told me she wanted to take that response back despite me reassuring her that it was perfectly fine if she did not trust it. I almost wish I had shared that I do not trust the healthcare system, but that could have been worse in terms of potentially encouraging bias.  What are some of your assumptions or sources of bias? This is an interesting case where on some level I worry I am doing her a disservice by thinking she might have been uncomfortable just because she was soft spoken. While the self-reflection is good, I want to make sure I do not want to make assumptions about her feelings just because my own background is coming from a family of people who are largely on the average to louder side and often very blunt.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias, and again, I do not want to make assumptions about her responses.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  Despite some of her hesitance, it feels like I should take her at her word. All data will be considered on the individual level and the level of the sample, so I will keep her response about the healthcare system in mind.     269 Written by (your name): [Research Assistant]  Participant ID: 55  What are some possible themes that came up? The theme of overall positive experiences did not change with this participant. She explained that everything has been “excellent” so far. This is in regard to how she was treated plus how the health care providers explained things in terms she could understand.  What were some of your thoughts and feelings at the time of the interview? I felt this participant overall had good experiences with her health care providers.   What are some of your assumptions or sources of bias? I had no prior assumptions or biases really, but I did find it ironic that most participants have had mainly positive experiences.   How might these assumptions or biases influence your perception of possible themes? My biases or assumptions do make it difficult to believe that most participants have had such good experiences with health care providers, but I cannot base my own personal experiences with others’ experiences.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The themes of overall positive experiences plus Covid-1 9not really having much of an impact with receiving medical care has changed with this participant.      270 Written by (your name): [Research Assistant]  Participant ID: 56  What are some possible themes that came up? The theme of “excellent” care came up again with this participant. He noted that the health care providers did as much as they could to help him. He also noted that he does not trust the healthcare system completely because he does feel some health care providers only care about the financial aspect of it.   What were some of your thoughts and feelings at the time of the interview? I appreciated this participant’s feedback and how honest he was with his experiences.  What are some of your assumptions or sources of bias? I had no prior assumptions or bias towards this interview.  How might these assumptions or biases influence your perception of possible themes? I reminded myself to keep an open mind and really listen to the participant’s experience.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The theme of overall positive experiences with the healthcare system did not change nor did Covid-19 really impact receiving medical care.       271 Written by (your name): [Research Assistant]  Participant ID: 57*  What are some possible themes that came up? The theme of overall positive experiences did not change along with the health care providers listening to their concerns did not change.   What were some of your thoughts and feelings at the time of the interview? I felt this participant overall had positive experiences with his health care providers and his health care providers considered his feelings and concerns.  What are some of your assumptions or sources of bias? As stated before, I kept an open mind and did not have any bias towards this interview.  How might these assumptions or biases influence your perception of possible themes? It reminds to keep an open mind and really consider what these participants experience.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The themes did not change in regard to how they were treated nor did Covid-19 impact them in receiving healthcare, but it does prevent a lot of participants from wanting to seek medical attention.  *Participant was excluded from the final analyses due to being younger than 55 years old.      272 Written by (your name): [Principal Investigator]  Participant ID: 58  What are some possible themes that came up? Possible themes included “good doctors are friendly and thorough,” “trusting health care providers knowledge leading to at least partial trust in the healthcare system,” “it’s important to advocate for your own health,” and “providers can improve communication by talking to insurance companies more.”  What were some of your thoughts and feelings at the time of the interview? This participant had a slightly raspy voice, so I just wanted to make sure that I was hearing and understanding her well. I also noticed that she had reported partial trust in the healthcare system and explained what parts she trusted, but when I asked what parts, she did not trust as much she responded that she was unsure. I was wondering if that was truly the case, or if she just did not feel comfortable telling me more negative things. If that is the case, I am a little worried that might be part of the reason she reported she had not had any negative experiences with a health care provider.  What are some of your assumptions or sources of bias? Some of the concerns above could also just reflect how I have had negative experiences with health care providers, so while it is a good reflection on the process, as well as her potential reaction to me as a researcher and White woman, I do not want to assume that she has had negative experiences just because I have.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.     273 Written by (your name): [Research Assistant]  Participant ID: 59  What are some possible themes that came up? The themes of positive experiences did not change, nor did they recall any negative treatment towards them from a health care provider. This participant, as many others, noted that the health care providers provide them helpful information about their health.  What were some of your thoughts and feelings at the time of the interview? I felt that this participant and many others did not really understand some of the questions that were asked. I tried to break the questions down so they could understand what I was asking.  What are some of your assumptions or sources of bias? I did assume this participant would have had similar positive experiences considering other interviews.  How might these assumptions or biases influence your perception of possible themes? My assumptions could influence me from really listening and just assuming all the experiences are positive.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  The theme of positive experiences did not change and like many other participants, they would like for their health care providers to sit down and really explain to them what is going on with their health.      274 Written by (your name): [Principal Investigator]  Participant ID: 60*  What are some possible themes that came up? Some themes are “good doctors are nice and provide information,” “bad doctors are rude and don’t tell you things,” “providers are more trustworthy than the system,” and “sexism in healthcare settings.”  What were some of your thoughts and feelings at the time of the interview? To be honest, I was a little frustrated because I knew I would not be able to include this person’s data regardless (she was not even 45), but she had been waiting to participate and I did not feel it would be fair to send her away without any compensation for her time. I kept a cool head, though.  What are some of your assumptions or sources of bias? My initial, immediate assumption was that she may have been aware that she was too young and still come to participate to get a Walmart gift card, especially since she declined to be recorded and kept her responses very brief. This could very well have been the case, but it is still an obvious case of bias.  How might these assumptions or biases influence your perception of possible themes? As always, I just aim to continuing making sure I do not have any confirmation bias and just making sure that I do not reflect any frustration I may feel about a situation during my interaction with participants because (1) that’s not polite or professional and (2) because it could discourage that person from wanting to participate in future research. I do not want to be someone’s negative experience.  With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes necessary; even if so, participant data would not be included because she is too young even for the younger cutoff (and she declined to be recorded anyway). *Participant was excluded from the final analyses due to being younger than 55 years old.    275 Written by (your name): [Principal Investigator]  Participant ID: 61  What are some possible themes that came up? Possible themes included “good doctor’s listen, convey that they care, and take patient preferences into consideration,” “bad doctors do not take things seriously,” “fatphobia/fat shaming,” “advocating for one’s own health,” and “preference for face-to-face doctor appointments.”  What were some of your thoughts and feelings at the time of the interview? I was a little relieved to have some insight into what makes a negative experience, but I also am curious by how rarely racism has come up as a theme. I also just appreciated the depth of her responses because that goes a long way towards adding nuance to data interpretation.   What are some of your assumptions or sources of bias? This participant has had some negative experiences with the healthcare system, so her experiences are more what I expect based on extant literature but also based on my bias. So, in this case it’s more of a matter of making sure I do not read too into her responses just because they are more in line with my assumptions. I also expected that racism would come up more frequently than other forms of discrimination.   How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      276 Written by (your name): [Principal Investigator]  Participant ID: 62  What are some possible themes that came up? Possible themes included “good doctors are friendly and address patient concerns by getting additional information when possible (e.g., additional testing),” “having mixed feelings about the trustworthiness of the healthcare system,” “attitudes about the healthcare system are influenced by experiences with specific providers and/or specific treatment recommendations,” and “comfort discussing issues with the provider because of the importance of advocating for one’s health.”   What were some of your thoughts and feelings at the time of the interview? One thing I had going on in the back of my mind was just noticing again that individual appointments tend to go a little longer and more in-depth. In future studies, I think I would try to rework how interviews in the community center worked to maybe remove some of the time pressure for both interviewers and participants.  What are some of your assumptions or sources of bias? Based on what I said above, I do not want to assume that just this means that participants from either source are inherently more honest/forthcoming. Merely that the one-on-one format helps create a better since of protected time. In addition, this was yet another participant who reported she had not had any negative experiences, which by now is a pretty well documented assumption/bias that I have.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.     277 Written by (your name): [Principal Investigator]  Participant ID: 63  What are some possible themes that came up? Possible themes included “good doctors are nice, pleasant, and informative,” “communication is important because it is my health,” “the healthcare system should not be as expensive as it is,” “trust in providers is built through clear communication,” and “trust is also built through long relationships with providers.”  What were some of your thoughts and feelings at the time of the interview? This was the first of two telephone interviews, so I was a little worried about how to navigate that effectively. Thankfully, everything worked out well.  What are some of your assumptions or sources of bias? This participant had a lot of the same thoughts and feelings that I have about the medical system. So, I just wanted to make sure that I recognize my assumptions in that my immediate reaction to her beliefs and attitudes was internally like a “YES!” That said, she, like many participants, reported that she did not have any negative experience, which is counter to my own bias.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.      278 Written by (your name): [Principal Investigator]  Participant ID: 64  What are some possible themes that came up? Possible themes included “good/trustworthy doctors are thorough and efficient,” “trust in the healthcare system reflects positive experiences with providers,” and “comfort talking to providers because it helps them know how to feel and gets the best information for the patient.”  What were some of your thoughts and feelings at the time of the interview? I was thinking that the telephone format of this interview made things feel a little less organic (at least on my end) just because there were no nonverbal cues for me to notice to provide any additional emotional context to responses. Other than that, the interview went well, and I was still able to get some useful information. There was also just some relief because I knew this was my last interview.  What are some of your assumptions or sources of bias? As has often been the case, this participant reported only positive experiences. So, I know one thing I have been wondering about as I have reflected on the entire study is the effect of memory in general. It is possible that some of the participants that have not reported a negative experience did have one (my expectation/bias), but it has been many years, so unless it was truly terrible, the experience might not be as memorable as perhaps a recent positive experience.  How might these assumptions or biases influence your perception of possible themes? As always, self-reflection is an important method of preventing confirmation bias.   With that in mind, what are some possible themes? What has changed (if anything)? NOTE: Acknowledging bias does not necessarily mean that you need to change your possible themes, but it does help contextualize them.  No changes feel necessary. All data will be considered both on the individual level and as a whole.    279 APPENDIX C AUDIT TRAIL   280 Data Familiarization and Code Formulation Important Note  For the sake of space and relevance, only meetings related to the data familiarization and coding processes are described. Meetings that provided only an update on project progression or noted discussions related to document edits were removed from the audit to make it more efficient. As such, some of the dates may seem more spaced out than would accurately reflect the frequency of research meetings. Additional research meeting notes are available upon request.  Participant Interviews and Research Meetings Interview 5/31/22 – Participant Home This interview was conducted by the principal investigator (PI), shadowed by a research assistant for training purposes. After the interview, the PI and research assistant had a peer debriefing. PI addressed the research assistant’s questions. We noted that this participant had a mix of positive and negative experiences but did not report any experiences of discrimination. PI completed a reflexive journal entry (see Appendix B, above) and uploaded it to OneDrive for research assistants to reference as an example. Interview 6/2/22 – Research Lab This interview was conducted by a research assistant and observed by the PI for training purposes. The research assistant did an excellent job working through all components of the consent process and interview. After the interview, the PI and research assistant had a peer debriefing. We discussed how it was interesting how a participant with negative experiences still had trust in the healthcare system overall, it seemed. The research assistant completed a reflexive journal entry (see Appendix B, above) and uploaded it to OneDrive.   281 Lab Meeting 6/10/22  This meeting was geared towards helping prepare research assistants and PIs for the first community center interview day. We reviewed interview skills and how to walk through the consent process. Research assistants were reminded that if anything happened or they did not know what to do, they could (and should) flag the PI down during the interview day because if there are any emergent issues, it is the PI’s responsibility to handle them. The team also discussed how to increase prompts for more information. In the meeting, the PI and three research assistants discussed possible prompts to add to the interview. Additional recommended prompts were added and printed in preparation for the first interview day at the community center.  PI also reached out to the research assistant, who was unable to shadow prior to the first interview day. PI encouraged the research assistant to watch the interview recording of PI with a practice participant (family member) and feel free to ask any questions. Rural Community Center Interview Day #1 – 6/14/22  All three interviewers (PI and two research assistants) arrived at the community center. By the time we arrived, the community center organizers had already started setting things up, and participants were rapidly arriving. PI and research assistants did a quick peer debriefing prior to the start of interviews to coordinate how the team would introduce themselves and divide research packets. Then the team completed interviews.  At the end of the first interview day and the scheduling of two additional dates with the community center, the team met to do a quick peer debriefing. The team commented on the size of the gathering and their surprise about it. The team also shared their initial impressions of   282 participant responses. The general shared response was that far fewer participants reported any negative experiences with their health care providers or instances of discrimination than the team expected based on the literature and their own experiences. Due to the sheer number of interviews, it took the research team a bit longer to complete reflexive journal entries. After making sure it was okay through the Mississippi State University IRB, the PI gave research assistants access to the audio files from their own interviews (theirs alone, not each other’s) to help facilitate completing them without potentially mixing up participants. These audio files were kept on the research OneDrive and deleted from the recording devices after every interview or interview day. Interview 6/15/22 – Participant Home  PI completed this interview alone due to the unavailability of research assistants. No peer debriefing was completed. A reflexive journal entry was completed and uploaded to OneDrive. Rural Community Center Interview Day #2 – 6/16/22 Only two interviewers (PI and a research assistant) were able to make it to the second interview day at the community center. Once again, by the time we arrived, the community center organizers had already started setting things up. The interviewers touched base with the organizers about how to tackle interviews today. The PI and research assistant did a quick peer debriefing prior to the start of interviews to coordinate how they would introduce themselves to today’s participants and divide research packets. Then the team completed interviews.  At the end of the interview day, the two interviewers met to do a quick peer debriefing. Once again, the general shared response was that far fewer participants reported any negative experiences with their health care providers or instances of discrimination than the team   283 expected based on the literature and their own experiences. Due to the sheer number of interviews, it took the research team a bit longer to complete reflexive journal entries. Rural Community Center Interview Day #3 – 6/21/22 Only two interviewers (PI and a research assistant) were able to make it to the third (and final) interview day at the community center. Prior to the start of interviews, the PI and research assistant did a quick peer debriefing to coordinate how they would introduce themselves to today’s participants and divide research packets. Then interviews were completed.   At the end of the first interview day, the two interviewers met to do a quick peer debriefing. The interviewers again shared surprise at how it felt like very few participants reported any negative experiences with their health care providers or instances of discrimination. The interviewers briefly bounced ideas about the area potentially having more culturally competent or safe providers because the surrounding areas were so heavily African American. By this point, with how quickly data was collected, interviewers had a small backlog of reflexive journal entries to complete. In future projects, allowing time to complete each journal entry prior to starting the next interview could be a better alternative.  Interview 6/22/22 – Participant Homes (x2) and Phone Interview (x1)  PI completed these interviews alone due to the unavailability of research assistants. No peer debriefing was completed. A reflexive journal entry was completed and uploaded to OneDrive. Interview 6/24/22 – Phone Interview  PI completed this interview alone due to the unavailability of research assistants. No peer debriefing was completed. A reflexive journal entry was completed and uploaded to OneDrive.   284 Research Meetings with Dissertation Chair  PI did not document individual meetings with the dissertation chair during data collection and familiarization. Weekly meetings during this time were largely dedicated to updates regarding interviewer preparations, progress in scheduling and completing interviews, ensuring proper data security, and developing a plan for how to coordinate continued efforts while PI was out of state completing internship.  Brief Pause in All Research Meetings  Research meetings were placed on a brief pause due to the researchers having other obligations (e.g., family, new jobs, new school programs, moving, etc.). Research meetings related to data familiarization, coding, peer debriefing, and other forms of researcher triangulation resumed on a more intermittent schedule beginning in October 2022. In the meantime, interviewers were asked to complete any remaining reflexive journal entries, and the PI began training a new research assistant who joined the project.  Email Coordination – October 2022  By this time, the research team was spread over three states, so early resumption of team coordination and training of a new research assistant was conducted via email. During October 2022, PI checked in about wrapping up the last of the reflexive journal entries (completed via each interviewer reviewing audio from their own interviews for which they had not already completed a reflexive journal entry) and sending the new research assistant relevant materials. As the new research assistant would be involved in coding for the thematic analysis, PI sent her Braun and Clarke’s (2006) initial writings regarding how to conduct a thematic analysis. During this time, the new research assistant also completed their CITI training. While video meetings   285 with the dissertation chair were completed through September and October 2022, these meetings were focused on updates regarding the above and making document edits. Research Meeting with New Research Assistant – 10/27/22  During this meeting, the PI oriented the new research assistant to the project (Coder 2). This included presenting the dissertation proposal and providing a more in-depth explanation of the thematic analysis process. During this time, PI answered research assistant questions, and together they set up a tentative plan for further research meetings as data is transcribed so that coding can be conducted.  Research Meeting with (now) Post-Baccalaureate Research Assistants – 10/30/22  This meeting between PI and both (now graduated) research assistants was dedicated to getting re-oriented on the project and planning next steps. Transcription was (initially) being completed by PI, and a rough timeline was set with the understanding that all parties had less available time. The PI told research assistants she would update them when transcripts were completed and available for coding. PI thanked both research assistants for their continued interest in the project and encouraged them to communicate if that needed to change at some point in the future.  Research Meeting with Undergraduate Research Assistant – 11/3/22  The PI and undergraduate research assistant met to continue with orientation to the project. This meeting was dedicated to an additional review of the cultural safety framework because it is the framework that will influence coding and later theme development.      286 Research Meeting with Undergraduate Research Assistant – 11/10/22 The PI and undergraduate research assistant met to continue with orientation to the project. This meeting was dedicated to reviewing additional aspects of the literature background that will inform the deductive aspects of later coding. The emphasis was placed on the intersectional nature of the target population. Research Meeting with Post-Baccalaureate Research Assistants – 1/15/23  The PI and research assistants met to discuss relevant updates. Time was also spent getting reoriented to the coding process, including a quick review of relevant literature that the research assistants were already familiar with (essentially reviewing literature from the Introduction). One research assistant noted that she may not have sufficient time available in her schedule to participate in the coding process, but she would be happy to still attend research meetings for peer debriefings and possible later researcher triangulation. The PI noted this and thanked the research assistant for the update. Research Meeting with Post-Baccalaureate Research Assistants – 2/13/23  In this meeting, PI and post-baccalaureate research assistants met to discuss project progress and discuss possible codes and themes that are expected now that all three interviewers are familiar with the data. Once again, all three researchers discussed their general surprise regarding how few participants seemed to endorse having any negative experiences with a health care provider. We also discussed the possibility that this may reflect potential bias in memory because it is possible that some participants had a negative experience literally decades prior to their interview that, in the grand scope of their life experiences, simply does not stand out. This   287 was especially compared to the research interviewers’ potential biases as young adults who have had relatively recent negative experiences with a health care provider.   The researchers also discussed how it seemed like participants attributed negative aspects of health care in the U.S. to the system, while positive experiences were more tied to experiences with specific providers. Interestingly, many of the negative aspects attributed to the system were almost never attributed to sources of identity-based discrimination (e.g., racism, sexism, ageism, etc.). Other points that were brought up by the research assistants were that word of mouth, especially in more tight-knit communities, may allow more communication of which providers are more likely to mistreat people, and thus the community is able to avoid that provider and those experiences more readily. The researchers also briefly touched on how, due to some literacy issues for a handful of participants, a family member shared their experiences attending appointments with the participant. The team noted that it was always a female family member, which is consistent with the existing literature regarding caretakers.  Research Meeting with Undergraduate Research Assistant – 5/30/23  This brief meeting was dedicated to PI updating the research assistant that the remaining transcripts would be created by a transcription service to help improve the timeline for finishing coding. Research Meeting with Post-Baccalaureate Research Assistant – 6/3/23 The PI and a research assistant (Coder 3) attended this meeting. During this meeting, the team reviewed how data would be examined. The PI explained both what the final process would look like and what the research assistant’s role would be. PI explained the general coding structure that has been taken so far but highlighted that the research assistant’s approach did not   288 have to be the same because the goal was to create dialogue and inform more nuanced understandings of the data and related codes. The team also discussed methods of improving data collection in future research. As they reviewed their own interviews to complete the reflexive journal summaries, it became clear that, despite the inclusion of additional prompts, all interviewers missed prompts occasionally. The PI and research assistant discussed how this may in part be due to the sense of time pressure that the community center setting created, which was not ideal for making sure one carefully goes through each prompt (as needed). The research assistant noted that her new job as a veterinary assistant had really highlighted the importance of open-ended questions and follow-up questions to her in the past few weeks. PI and research assistant noted three things to do better in future research: (1) clarify lifetime questions (e.g., has this ever happened in your life), (2) be aware of limitations with data from adult children of participants (these data were later excluded from final analyses), and (3) consider possible follow-up prompts for when participants respond to the first question with “no.” Research Meeting with Post-Baccalaureate Research Assistant – 6/4/23 The attendees for this research meeting were the PI and another research assistant. We reviewed and discussed reflexive journal summaries and shared thoughts on overall impressions of the data, especially since interview transcripts were being coded. Even though this research assistant was unable to participate in coding due to other commitments, PI provided a coding update and noted that theme generation would begin soon. The research assistant indicated that she should be available for theme discussions when the time arises (see “Research Meeting 7/22/23).    289 Research Meeting with Undergraduate Research Assistant – 6/8/23 This was a meeting between the PI and the undergraduate research assistant. This meeting was focused on PI providing updates related to transcripts, discussing the coding process, and early discussions of names for codes. The PI and research assistant also reviewed coding methods (e.g., inductive vs deductive and how to balance the two).  Research Meeting with Dissertation Chair – 6/11/23  This meeting between the PI and dissertation chair was focused on updating the dissertation chair about coding progress and reviewing edits made to the dissertation document. Research Meeting with Undergraduate Research Assistant – 6/13/23  This meeting between PI and research assistant was focused on discussing a timeline for completing coding based on recent changes to the research assistant’s schedule. The PI and research assistant agreed to cut down the number of assigned transcripts to a number that would allow for the completion of coding by the end of June 2023. PI and research assistant also shared general thoughts about common codes (peer debriefing/researcher triangulation). PI and research assistant reflected that it was interesting how few people reported negative experiences based on their own experiences and how self-reflection was an important aspect of preventing bias. Research Meeting with Undergraduate Research Assistant – 6/19/23  This brief meeting between the PI and research assistant was focused on discussing coding progress. By this point, coding was expected to be completed by the end of the month.     290 Research Meeting with Undergraduate Research Assistant – 6/26/23  This brief meeting between the PI and research assistant was focused on discussing coding progress. The research assistant said she would complete the last transcripts by the following day and asked if it would be possible to meet to discuss them. The PI and research assistant found a shared time for this meeting. Research Meeting with Undergraduate Research Assistant – 6/27/23  This was the final meeting between the PI and undergraduate research assistant for the purposes of this project. This meeting involved one final update about coding being completed by Coder 2 and a final discussion about names for codes and reflecting on the process and what was learned from the process. Research Meeting with Graduate Researchers – 7/1/23  This meeting was attended by PI and two graduate researchers (Coder 4 and 5) from the who volunteered their time. As with the other coders, PI explained the approach to coding that is taken (balance of inductive/deductive) and explained that the main goal was to essentially facilitate dialogue with other coders (like PI) and encourage more reflection on final codes and their subsequent themes. A de-identified example transcript was coded during the meeting and emailed to Coders 4 and 5 for their review. Coders 4 and 5 emailed their first de-identified coded transcripts for approval, and then they were approved to continue coding. Based on their availability, Coder 4 received 22 transcripts, and Coder 5 received eight. Final coded de-identified transcripts were emailed to PI.     291 Initial Codes by Coder Coder 1 (PI) For the sake of space, the following are based on the first five transcripts completed (prior to purchase of NVivo); the full list of all final codes is described following the codes provided by individual coders. Full transcripts with coding are available upon request.Positive experience • Negative experience • Reported discrimination • Did not report discrimination • Treatment impacted future treatment seeking • Treatment did not impact future treatment seeking • Treatment impacted treatment adherence • Treatment did not impact treatment adherence • Trusts healthcare system • Does not trust healthcare system • Trusts primary care provider • Mistrust impacted future treatment seeking • Mistrust did not impact future treatment seeking • Mistrust impacted treatment adherence • Mistrust did not impact treatment adherence • Reported unclear information • Denied unclear information • Comfortable telling provider they don’t understand    292 • Not comfortable telling provider they don’t understand  • Reported disagreement • Denied disagreement • Comfortable telling provider they disagree • Not comfortable telling provider they disagree • Reported instance of not seeking treatment • Denied instance of not seeking treatment  • Good quality examination • Thoroughness • Take-home information • Nice/Kind • Expresses care • Affordable • Received good care • Explain things well • Comfortable with communicating not understanding • Comfortable with disagreeing with health care provider • Comfort because doctor listens • Time outside appointments • Improve communication with follow up (phone or appointment) • Friendly • Slow (long wait time) • Rude/arrogant • Only cared about money   293 • U.S. healthcare system is good/high quality • Doctors should be honest • Information source = doctor • Information source = books • Information source = internet • Information source = other people • Goes straight to doctor when encountering a medical issue • Always addresses medical issues • Did not address if unnecessary • Impact of Covid = anxiety/fear • No impact of Covid Coder 2 (Undergraduate Research Assistant) For the sake of space, the following are based on the first five transcripts completed. Full transcripts with coding or a full list of codes are available upon request. • Positive/good experience • Friendly/good communication • Doctor listens • Respectful/professional • Negative experience • Wait time • Discrimination • No discrimination • Doesn’t completely trust system   294 • Second opinion • Distrusts the healthcare system • Trusts health care provider • Media influence • Fear of discrimination • Feels like they don’t care • Trustworthy  • Long-term relationship • Feelings of mistrust • Main source of info = doctor • Main source of info = internet • Main source of info = reading • Main source of info = word of mouth • Unclear experience/ was resolved • Disagreement • Displayed ageism • Better listening • Comfortable asking questions • Comfortable speaking up • Dislikes virtual appointments • Tell everything upfront • Wants honesty   295 • Wants explanation • Listens to/sees doctor • Goes to ER • Resists treatment if unnecessary • Home remedies • No covid impact • Covid impact = anxiety/fear/ alertness Coder 3 (Post-Baccalaureate Research Assistant)  For the sake of space, the following are based on the first five transcripts completed. Full transcripts with coding or a full list of codes are available upon request. • Friendly • Honest • Information from doctor • Wait time • Go straight to doctor • US healthcare system is good/high quality • Good quality examination • No impact (of Covid) • Take home information/results Coder 4 (Graduate Researcher) For the sake of space, the following are based on the first two transcripts completed. Full transcripts with coding or a full list of codes are available upon request.   296 • Positive experience with doctor • Provided treatment • Addressed physical concerns • Provided relief • Thorough / Quality care • Takes time to explain • Accommodating(?) / Attentive • Checks in • No negative experiences, treated fairly and respectfully • No experiences that discouraged care or treatment noncompliance • No avoidance of medical care or noncompliance • Provider hasn't discouraged treatment seeking or compliance • No influence on medical procedures or treatment compliance • Trusts healthcare system • Trusts healthcare system / Treated well • Trusts healthcare system / Trusts because has to • Inherent trust • Trusts hospitals • Doesn't trust all of healthcare • Trusts primary physician • Informative / Directive • Gets info from nurses • Medical info from doctors • Provided clear information   297 • Clear information • Comfortable asking for clarity • Seeks reassurance • Agrees with provider • Comfortable disagreeing with provider • Asks questions • Addressed issues • Trust dependent on responses(?) • Communicates with medical staff • Seeks medical care • Explains clearly • Follows up when there's an issue • Provides recommendations / Discuss options • Mistrust hasn't influenced treatment compliance • Clear information • Good rapport • Comfortable seeking clarity • No disagreement with provider • Comfortable expressing disagreement • Comfortable asking questions • Regular check ups • Personal choice / Autonomy • Inquisitive • Good communication   298 • Follows treatment recommendations • Seeks clarification • Seeks medical care / Doesn't self-treat • Resistant to surgery but complying for health concerns • Avoided doctors because didn't want to get them sick • Financial distrust(?) • Covid delayed healthcare treatments • Followed CDC guidelines Coder 5 (Graduate Researcher) For the sake of space, the following are based on the first two transcripts completed. Full transcripts with coding or a full list of codes are available upon request. • Informed me about my healthcare • Worked hard to keep me alive • Medication management • Follows doctor’s recommendation • Understands that doctors are not perfect • Trusts the doctor’s judgement • Trust in specific doctors • Some doctors care about patients • Some doctors are only financially driven • Trust is mandatory because they are experts • Doctors can fix the things that may kill you • Doctors and Nurses, or specialists   299 • Primarily the doctor • No blind trust • Open communication and collaboration • Dislikes Automated voice messaging services • Eat better; be better about following recommendations • Medical treatment is essential to live a long life • Wear a mask • Be cautious • Wear a mask despite difficulty breathing • Financially strained • Strained resources Final Coding Process  After careful consideration of all the coding provided, Coder 1 (PI) went back through all interview transcripts and incorporated additional coding where appropriate. These additional codes were produced through a combination of thorough line-by-line coding and dialogue with codes provided by the other coders. Additional coding was incorporated in instances where the additional codes enriched the overall impression of the data. These codes were then utilized in the creation of final themes and in providing greater context and nuance within the final report. The following is a list of all final codes, including the structural codes that helped organize the data by qualitative interview question. As such, the codes are described below after the qualitative question they are connected to is stated.     300 Qualitative Question 1  Think of a positive interaction you had with a health care provider (e.g., a doctor, nurse practitioner, physician assistant, or other primary care provider). What made this experience positive? • 1.0) Denied Positive o no providers currently • 1.1) Endorsed Positive o asks me how I feel o cheerful / bubbly / smiled o clear communication, discussion o correct medication o friendly o good service / treated well / helpful o listens to patients o nice and kind o nothing unnecessary o patience o provider available by phone o provider calls to check in o provider cares about them o respectful o sent to correct specialist o shared understanding o takes extra time   301 o quality exams / additional testing o timely service • 1.2) Most likely about outcome (not how health care provider behaved) o correct diagnosis o everything was okay Qualitative Question 2  Think of a negative interaction you had with a health care provider (e.g., a doctor, nurse practitioner, physician assistant, or other primary care provider). What made this experience negative? If the participant is referring to a time where their MEDICAL treatment went poorly, ask “What about the health care provider made that interaction negative? • 2.0) Denied Negative • 2.1) Endorsed Negative o received multiple phone calls o cared more about money o costs or additional fees o did not listen o did not seem to care o dismissive o had been smoking o had to get a drug test for medication they were already taking o not doing what they need to do o not enough testing o not timely o procedure done too early   302 o provider left without warning o provider made assumptions about patient motives o provider never came o punished for seeking second opinion o rude and arrogant Qualitative Question 3 Have you ever experienced unfair or disrespectful treatment while receiving medical care based on one or more aspects of your background and/or identity (e.g., gender, age, race, ethnicity, skin color, body size, etc.)? • 3.0) Denied discrimination • 3.1) Endorsed discrimination o ageism o fatphobia / fat shaming o racism o sexism • 3.2) Awareness it does or could happen Qualitative Question 4  Have you ever had an experience with a health care provider that discouraged you from seeking treatment later? • 4.0) No, not discouraged from seeking treatment later • 4.1) Yes, discouraged from seeking treatment o doctor never arrived o have not been to any provider since   303 o have not gone back to provider after negative experience o initial treatment was not effective Qualitative Question 5 Has a health care provider’s treatment of you ever influenced your decision to follow their treatment recommendations? • 5.0) No impact on following treatment recommendations • 5.1) Impacted following treatment recommendations o did not necessarily want to follow recommendations o positive experience led to following recommendations o related to follow up care o sent to another provider (good) o treatment failed, looked for different opinion o treatment had side-effects Qualitative Question 6  Do you trust the U.S. healthcare system as a whole? • 6.0) Does not trust healthcare system o doing unnecessary procedures o incorrect information, hard to know who to trust o insurance problems o it's all about money o lack of trust because of negative experiences o lack of trust in general   304 o media o not enough benefits o put trust God or other higher power instead o system does not care o will rip you off • 6.1) Partial trust in healthcare system o it is what it is, acceptance o recognizes room for improvement • 6.2) Trusts Healthcare System o belief that system is high quality o believe they know what they are doing o doesn't hurt to get a second opinion o I just believe in them o patient stays well informed o puts faith in God o seem fair o take the good with the bad o trust based on own positive experiences o value my needs o yearly check-ins feel helpful, reliable     305 Qualitative Question 7  Do you trust your primary health care provider? • 7.0) Partial Trust PCP o does not always feel like they are listened to • 7.1) Trusts Primary Care Provider o checks up on patients o clear communication and information o efficient o gives good treatment recommendations o long relationship o no choice but to trust because you need their help o polite o provider cares about them o provider improved their health o quick to respond to needs o reachable by phone for check-ins o they tell the truth o thorough o trust based on positive experiences o trusts that they are knowledgeable o understanding about money     306 Qualitative Question 8  Have feelings of mistrust in the healthcare system or a specific health care provider ever influenced your decision about whether to get a specific medical procedure? • 8.0) Mistrust did NOT impact seeking a specific procedure • 8.1) Mistrust DID influence decision about specific procedure o bad experience resulted in lack of trust in specific provider o could not afford out of pocket o decided to look for a new provider o declined to describe; related to invasive procedure o did not trust virtual exams/appointments o mistrust in a procedure lead to not wanting to get it done o previous treatment did not work Qualitative Question 9  Have feelings of mistrust in the healthcare system or a health care provider ever influenced your decision about whether to follow specific treatment recommendations? • 9.0) Mistrust did NOT impact following specific treatment recommendations o gets nervous but prays about it • 9.1) Mistrust DID impact following specific treatment recommendations o got a second opinion o had an allergic reaction to medication     307 Qualitative Question 10  Where do you get information about health and medical treatments? • Sources of Information o books o health care providers o insurance provider o online o other people o pharmacist o radio o tv Qualitative Question 11  Have you ever received information from a health care provider that was unclear? • 11.0) Denied unclear information • 11.1) Endorsed unclear information o did not understand what doctor told them o not enough information provided o provider did not do enough testing o provider was unsure what problem was at the time o treatment did not make sense o treatment for wrong condition     308 Qualitative Question 12 Would you feel comfortable telling a health care provider if you did not understand their directions? • 12.0) Possibly uncomfortable disagreeing o can't trust everyone, would prefer written information o uncertain because of fear of retaliation • 12.1) Comfortable asking for clarification o comfortable because of long relationship o good relationship with provider o part of check ups o wants doctor to understand o wants to understand own health o wants to understand risks o will not proceed with treatment until they understand Qualitative Question 13 Have you ever received information or recommendations from a health care provider that you disagreed with? • 13.0) Denied disagreement • 13.1) Endorsed disagreement o disagree but still followed up o disagreement about specific treatment o felt dismissed because same complaint multiple times   309 o prayed about it o provider attributed problems to mental health Qualitative Question 14 Would you feel comfortable telling a health care provider if you did not agree with their directions? • 14.0) Would not feel comfortable o does not want to get “mean” with doctor o fear of retaliation • 14.1) Comfortable communicating disagreement o comfortable because of long relationship with provider o good relationship with provider o good to have a second opinion o I know my body o I would know if they were telling me the right things o it's my decision o it's my health o quality of participant o to get more testing or information o to reach shared understanding o want provider to know o will not proceed until understanding is reached     310 Qualitative Question 15 What can health care providers do to better communicate with you about your health? • 15.0) Endorsed Good Communication Already o had no recommendations o I communicate well with them • 15.1) Qualities of Good Communication o advocate with insurance companies o ask the right questions o be mindful of patient preferences o break it down o call patient to discuss o do not assume patients understand o explain options o explain what to expect, possible outcomes o face-to-face preferred o focus on patient care not money o follow up about treatment o give physical copies of information o give reminders for appointments o listen to patients o make it clear you care o provide sufficient information o respect patients   311 o stop putting telemarketers in the way o take more time o tell the truth o use plain language Qualitative Question 16 When you experience a health issue, what steps do you normally take to help resolve the issue? • 16.0) Do Nothing • 16.1) Steps Taken o address on own (e.g., check blood pressure) when possible o call doctor to ask questions o do research o go straight to doctor to discuss o go straight to ER o go to doctor if it seems necessary o home remedies o make appointment with doctor o pray about it o take medications, follow recommendations Qualitative Question 17 Have you ever had an experience where you were having a health issue but chose not to seek medical treatment?   312 • 17.0) Denied ever not seeking treatment for a health issue o active agent of own health o does not like to guess about health o I take my health seriously • 17.1) Endorsed instance of not seeking medical attention o did not want to pay bill o fear of discrimination o fear of what outcome may be o fear or discomfort with the procedure itself o felt like going would not be helpful o following bad experience o had no transportation o needs new doctor o previous treatment failed o took care of it themselves o tried home remedies first o when it felt unnecessary Qualitative Question 18 How has COVID-19 impacted your experiences with health care? • 18.0) Denied impact of Covid • 18.1) Endorsed impact of Covid • 18.2) How Dealing with Covid   313 o expenses have gone up o followed CDC recommendations o got vaccinated o prayed o scared, anxious o tried to be careful o trust in system X) prayer / faith / God Research Meeting with Dissertation Chair – 7/9/23 PI met with the dissertation chair to briefly update her about the coding being completed and how theme generation will progress. Theme Generation Search for Themes Upon completion of all reflexive journal entries and coding by all coders, initial themes were generated through brainstorming during a research meeting on 7/20/23 between the PI and a research assistant. The themes generated are shown below as they relate to the research question sets of the study. Research Meeting 7/20/23 RQ1.1-1.2: How do older rural dwelling African Americans characterize a positive vs negative experience with health care providers? • Positive (RQ1.1): o Nice/Kind   314 o Friendly o Listens to me o Takes extra time o Attentive o Good exams • Negative (RQ1.2): o Wait times o Specific to a given provider (like doctor was showing off) o Felt like doctor was not listening to them o Felt like doctor was dismissive o Doctor did not show up RQ2.1: How do older rural dwelling African Americans experience discrimination?  • Unspecified discrimination o Recheck data to determine if this ever actually occurred • Racial discrimination • Sexism • Did either veteran participant report any discrimination based on veteran status?  • Aware that discrimination happens but has not experienced it personally RQ2.2: Do experiences with discrimination influence whether they seek medical treatment?  • Doctor specific; bad experiences → leaving that specific provider o Note, many people who endorsed that physician’s treatment of them impacted whether they would pursue treatment    315 RQ2.3: Do experiences with discrimination influence whether they adhere to medical recommendations?  • Treatment or doctor specific  RQ3.1: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they pursue treatment?  • Correlated primary care provider to system • Lack of trust due to costs • Lack of trust due to things heard through media (connections to primary source being the internet?) RQ3.2: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they adhere to medical recommendations? • Trust → followed recommendations • Lack trust → did not follow or got second opinion (advocating for themselves) RQ4.1: How do communication barriers (e.g., health literacy, use of technical language vs plain language, physician communication style, etc.) influence whether older rural dwelling African Americans pursue treatment? • Many advocated for their health • Seemed to be more common for women RQ4.2: How do communication barriers influence whether older rural African Americans adhere to medical recommendations? • Would like more information   316 • Need to use plain language • Take home information • Phone follow ups RQ5.1: What do older rural dwelling African Americans do to manage emerging health issues? • Do straight to the doctor • Home remedies / try to fix it themselves (first) • Ignored it RQ5.2: How do older rural dwelling African Americans address treatment barriers? • Cost • Wait (waiting room and appointments) • Discrimination  • Fear of the doctor As the PI and research assistant reflected on the generated themes, they discussed possible explanations for the broad trends in the data. At this stage in the theme generation process, the themes have not been tied to a number of theme instances or developed by systematically combing through codes and identifying quantifiable patterns.  The PI and research assistant discuss how it seemed like when people had negative experiences, they were largely attributed to a specific health care provider rather than the system at large. This could partially be due to how those who reported having negative experiences (whether based on discrimination or some other factors) seemed to move on to another provider relatively quickly. This is somewhat possible due to the specific geographical area. Even those in   317 the farther-out parts of our sample area were within 10 miles or less of two or three major hospitals. That is one of the benefits of being in a moderately rural area with proximity to a college town.  Other possible explanation for the patterns described above included wondering if there was some kind of cohort effect where older generations still put doctors very much on a pedestal, whereas it seems like younger generations are quicker to be more critical of things. Other considerations included how medical advancements might seem especially remarkable to people who were alive before they were developed, how older rural African Americans may have lower (or more realistic) standards and expectations for what constitutes a positive experience, and how social media culture (where people can readily rate businesses, including medical facilities) may influence expectations. Another possibility may be that people from rural environments tend to be more stoic about things. That said, the PI and research assistant also reflected on how we have a pretty significant bias in that everyone on the research team has openly discussed having experienced some form of poor treatment or discrimination while receiving medical care, so the team has consistently been expecting it to be reported at higher rates. While conducting Phases 4 and 5 of thematic analysis, it became clear upon reflection and more in-depth analysis of the data that some of the themes noted above stood out because of their novelty, which gave the impression that some of these concepts, codes, and themes were endorsed with greater regularity than they really were. Significant discussion was focused on why there were fewer reported negative experiences and experiences of discrimination than were expected. After the research meeting on 7/20/23, initial theme diagrams were developed. These theme diagrams reflect initial impressions of the coded data and how they relate to the current   318 study’s research questions. As described below, some diagrams will reflect simpler concepts, while others will attempt to describe potential connections between these concepts.  Theme Diagraming  The following pages document the process of developing diagrams to describe the relationships between research questions and the generated themes. Figure C1  Initial Themes for Positive Healthcare Experiences  Note. This was an initial attempt at modeling themes related to RQ1.1: How do older rural African Americans characterize a positive experience with health care providers?    319 Figure C2  Simplification of Themes for Positive Healthcare Experiences  Note. This visually represents potential combinations of themes to create a more efficient model.  After combining these themes to potentially create a more efficient representation of the data, the resulting model would look like Figure C3 below. This process was discussed both in a meeting with a research assistant on 7/22/23 and again with the dissertation chair, Dr. Carolyn Adams-Price, on 8/1/23. During both meetings, it was agreed that a more efficient representation was preferred. Dr. Adams-Price proposed the alternative label “Nice / Friendly” for the combined themes on the left, which were initially given the working label “Pleasant.” PI agreed to take the alternative label under advisement when the final themes were being named.     320 Figure C3  More Efficient Representation of Themes for Positive Healthcare Experiences  Note. This model illustrates a more simplified representation of themes in the data after utilizing the proposed combinations depicted in Figure C2. The initial theme diagrams created for RQ1.2 follow a similar logic as those presented above. The first model depicts a more complicated presentation of the data, and the following models indicate how themes could be combined and simplified.     321 Figure C4  Initial Themes for Negative Healthcare Experiences  Note. This was an initial attempt at modeling themes related to RQ1.2: How do older rural African Americans characterize a negative experience with health care providers? Figure C5  Simplification of Themes for Negative Healthcare Experiences  Note. This visually represents potential combinations of themes to create a more efficient model.   322  The themes represented on the left were determined to be similar enough to potentially be combined. Meanwhile, the theme on the right was determined to be too rare. Another theme that was anticipated but not immediately apparent in the data would be something to the effect of an opposite to “thorough” because the characteristics used to describe negative experiences with health care providers largely seemed to be opposites of the characteristics used to describe positive experiences with health care providers. This was discussed both in a meeting with a research assistant on 7/22/23 and again with Dr. Adams-Price on 8/1/23. The research assistant agreed with this logic, and Dr. Adams-Price recommended seeing how the data informed the final model. Figure C6  New Proposed Themes for Negative Healthcare Experiences  Note. This diagram visually represents the noted possibilities described above.   323 Figure C7  Initial Themes for Types of Discrimination  Note. This initial theme diagram was created for RQ2.1: How do older rural African Americans experience discrimination? Here, the unconnected circles represent ideas that may not have sufficient data to support them.     324 Figure C8  Initial Themes for the Impact of Discrimination  Note. This initial theme diagram was created for both RQ2.2: Do experiences with discrimination influence whether they seek medical treatment? and RQ2.3: Do experiences with discrimination influence whether they adhere to medical recommendations?  Both initial theme diagrams regarding discrimination and its impact on older rural African Americans’ healthcare decisions may have relatively little data to support them based on peer debriefings (including the research meeting with a research assistant on 7/22/23), reflexive journal entries, and a review of the codes. The initial themes represented on the left were determined to be similar enough to potentially be combined. In a meeting with Dr. Adams-Price on 8/1/23, PI and Dr. Adams-Price agreed that the final, in-depth review of the codes would help inform the development of the final models, or lack thereof.  The following theme diagrams were designed to represent answers for the third set of research questions aimed at understanding whether older rural African Americans trust the   325 healthcare system, whether they trust their primary health care providers, and how their trust or lack thereof may impact their healthcare decisions. Initial representations focus more on mistrust, as that is a frequently referenced subject in health disparities literature. This may not be the best final representation because lack of trust in one’s primary care provider was extremely rare. Figure C9  Initial Themes for Mistrust in the Healthcare System  Note. This initial theme diagram was created for RQ3.1: Do older rural African Americans trust the healthcare system?     326 Figure C10  Initial Themes for Mistrust in the Healthcare System  Note. This initial theme diagram was created for RQ3.2: Do older rural African Americans trust their primary health care providers? Figure C11  Initial Diagram of Trust vs Mistrust  Note. This model was designed to attempt to model trust and mistrust of the healthcare system and primary care providers in the same diagram.   327 Figure C11 was designed with contributions given during the research meeting between the PI and research assistant on 7/22/23. The research assistant pointed out that people she interviewed who reported trusting the healthcare system were often people who reported that they only had positive experiences with health care providers. Upon reflection, this seemed to be the case with many of the PI’s interviews as well. The research assistant’s idea was shared with Dr. Adams-Price during a research meeting on 8/1/23 who agreed that this could be interesting if supported by the data. No initial diagrams were created to model the impact of mistrust on healthcare decisions because, on first brush, the data felt very inconsistent. More in-depth analysis of codes will be needed to identify potential patterns in the data. Figure C12  Initial Theme Diagram for Communication Barriers  Note. This model was designed to model themes related to RQ4.1: What communication barriers do older rural African Americans experience when interacting with health care providers?   328 This initial theme diagram attempts to indicate how, in situations where there are communication problems, both doctor and patient factors are involved. It was unclear from initial impressions of the data if lack of trust or a patient-provider power dynamic were supported by the data. They are proposed here simply because they are themes that come up in health disparities research. This diagram and the diagram on the following page were discussed both in a meeting with a research assistant on 7/22/23 and again with the dissertation chair, Dr. Carolyn Adams-Price, on 8/1/23. The more complex diagram depicted in Figure C13 (next page) shows a better representation of how these factors relate to one another and is more in line with depictions of personal and organizational health literacy. This more complicated representation, with themes and subthemes, in some ways clarifies how these factors relate to one another better. Both the research assistant and Dr. Adams-Price agreed that if the data can support it, this is the superior representation.     329 Figure C13  Multifaceted Representation of Communication Barriers  Note. This model was designed to illustrate what factors are related to what party in patient-provider communication.  No initial theme diagram was proposed for RQ4.2: Do older rural African Americans feel comfortable addressing communication problems with their health care providers? Why or why not? The resounding answer to the close-ended portion of this research question appears to be a resounding yes, but the exact reasons for this comfort seem to be highly variable at first. It seems to be some combination of ownership of one’s health, desire to reach a shared understanding with providers, and a quality of the participants (e.g., “that’s just the way I am”). A systematic review is needed to better identify patterns within participants responses to these questions.    330  The following diagrams were created with the intent of capturing major themes related to RQ4.3: What can health care providers do to improve how they communicate with older rural African Americans? As with many of the previous diagrams, first a more complicated diagram with many themes is presented, followed by diagrams that suggest possible methods of combining themes and what the simplified diagram might look like. Figure C14.  Themes for Recommended Methods of Improving Communication  Note. This model was designed to provide an initial illustration of themes related to RQ4.3: What can health care providers do to improve how they communicate with older rural African Americans?     331 Figure C15  Simplification of Themes for Recommended Methods of Improving Communication  Note. This model depicts possible methods of simplifying the final theme diagram to create a more efficient representation of the meaningful relationships in the data.     332 Figure C16  More Efficient Representation of Themes for Positive Healthcare Experiences   Note. This model depicts the final themes generated from combining themes.  These models were reviewed both in a meeting with a research assistant on 7/22/23 and again with Dr. Adams-Price on 8/1/23. The research participant and PI brainstormed together to come up with names for the themes that resulted from combining other themes.     333 Figure C17  Initial Themes for Methods of Addressing Health Issues  Note. This model illustrates initial themes related to RQ5.1: What do older rural African Americans do to manage emerging health issues? Not all these themes may be found significant in the final data analysis. For example, home remedies might become something like “attempt to treat on own first.” This could include home remedies, or it could include taking some over-the-counter medication. Further exploration of the data along with queries in NVivo can help further clarify these data. The following diagram below attempts to illustrate the kinds of (non-communication based) barriers to treatment that participants reported encountering or are described in the literature. During a meeting with Dr. Adams-Price on 8/1/23, she pointed out that even though all the participants   334 included in the final analysis reported having health insurance, their deductible could be quite high. This diagram is not directly related to a study research question and thus will not be depicted in the final theme diagrams. However, it did still offer some insight into treatment barriers to investigate and see how participants navigated these issues. Their solutions to barriers will provide a response to RQ5.2: How do older rural African Americans address treatment barriers? Figure C18  Themes for Access Barriers to Health  Note. This diagram attempts to clarify the access barriers participants encountered. Their solutions to these barriers will be explored in greater depth in the final analysis.   335 Phases 4 (Reviewing Themes) and 5 (Defining and Naming Themes) of the thematic analysis are described in tandem below. Final themes were generated by categorizing codes taken from the final coded transcripts. These codes were grouped with the goal of creating coherent patterns in the data that provide meaningful answers to the current study's research questions. Before these names were given their final names and data-driven definitions, they were simply categorized in numbered clusters as demonstrated in the tables below (e.g., “cluster 1,” “cluster 2,” “cluster 3”). For brevity, the column titles in the tables below reflect the final theme names. Definitions are also given after each table. These themes were then mapped into visual representations of the data. In some cases, the final thematic maps closely resemble the initial maps, while others change significantly after being informed by a systematic review of the data, and additional considerations were taken regarding how to represent the data most meaningfully. See the following pages for descriptions of how codes were systematically reviewed, categorized, and organized into meaningful final themes.      336 Reviewing, Naming, and Defining Themes Positive vs Negative Healthcare Experiences RQ1.1: How do older rural African Americans characterize a positive experience with health care providers? (QQ1) Table C1  Themes for Positive Experiences with Health Care Providers Pleasant (x32) Readily Accessible (x5) Good Communication Skills (x22) Good Clinical Skills (x16) • Nice/kind • Friendly • Good service/treated well/helpful • Respectful • Patience • Cheerful, bubbly • Provider cares about them • Provider available by phone • Timely service • Provider calls to check in • Clear communication and discussion • Listens to patients • Takes extra time • Asks me how I feel • Shared understanding  • Quality examination and testing • Sent to correct specialist, when needed • Correct medication • Gave correct diagnosis • Nothing unnecessary  Note. This table explains how four final themes for positive experiences were generated from various codes and indicates the number of instances for each theme.     337 Pleasant. The provider creates positive affect in their patients through their own positive affect and through providing “good service” involving respect and care for patients. Readily Accessible. This includes patients being able to be seen relatively quickly and providers making themselves readily accessible by phone calls (both initiated by the patient and by the provider). Good Communication Skills. The health care provider in question communicates well with patients. Good Clinical Skills. The health care provider in question is good at what would be considered core clinical skills of their profession.     338 RQ1.2: How do older rural African Americans characterize a negative experience with health care providers? (QQ2) Table C2  Themes for Negative Experiences with Health Care Providers Delayed Treatment (x6) Poor Communication Skills (x7) Poor Clinical Skills (x8) Unpleasant (x9) • Not timely • Provider left without warning (forced reschedules) • Provider never arrived • Drug test needed for a medication that were already taking • Did not listen • Dismissive • Procedure done too early • Not enough testing • Not doing what they need to do • Rude / arrogant • Did not seem to care • Cared more about money • Punished for seeking a second opinion • Made assumptions about patient motives  Note. This table explains how four final themes for negative experiences were generated from various codes and indicates the number of instances for each theme.  Only one participant also reported an instance where cost was the primary source of the experience being negative. One single instance was not sufficient to justify an entire theme, but it does help further characterize participants’ experiences in some ways due   339 to the contrast. When characterizing negative experiences (as well as positive) with health care providers, the emphasis was placed on how participants were treated interpersonally and how the provider’s behavior impacted the quality or accessibility of their care. Delayed Treatment. In some way(s), the treatment was not as timely or readily available as needed or desired. Poor Communication Skills. The provider’s communication was poor, usually from not listening to the patient’s perspective. Poor Clinical Skills. The health care provider in some way failed to fulfill their role as a provider or were not thorough. Unpleasant. The health care provider was not enjoyable to interact with (e.g., usually unfriendly or aloof).  Discrimination RQ2.1: How do older rural African Americans experience discrimination? (QQ3) Table C3  Themes for Discrimination Experienced Racism (x2) Ageism (x1) Sexism (x1) Fatphobia/Fat shaming (x1) Acknowledged But Not Personally Experienced (x2) • Racism • Ageism • Sexism • Fatphobia/Fat shaming • Awareness it does or could happen  Note. In this case, the themes (and theme definitions) were generated directly from the codes based on what participants reported was the perceived source of their mistreatment.   340  RQ2.2: Do experiences with discrimination influence whether they seek medical treatment? (QQ4) Not really. Most reasons for not seeking treatment were related to poor outcomes or treatment that the participant did not characterize as being based on discrimination. When focusing on the responses of those that reported experiencing discrimination, the outcome was always some form of “did not see that provider again.” RQ2.3: Do experiences with discrimination influence whether they adhere to medical recommendations? (QQ5) N/A; because those that experienced discrimination never saw that provider again (or it was not their primary care provider to begin with) after that experience (in one case, the provider did not ever arrive) there were not any treatment recommendations given at that time (e.g., it was not their primary care provider, or it was their first time seeing that provider). Trust vs Mistrust RQ3.1: Do older rural African Americans trust the healthcare system? (QQ6) No Trust: 9 Partial Trust: 8 Yes, Trust: 29     341 Table C4  Themes for Reasons to Trust the Healthcare System Belief That the System is Good (x9) Belief in Own Ability to Navigate It (x8) Trust Based on Positive Experiences with Providers (x17) • Belief that the system is high quality • Believe that they know what they are doing • Seems fair • Value my needs • Doesn’t hurt to get a second opinion • Take the good with the bad • It is what it is / acceptance • Patient stays well informed • Trust based on positive experiences with providers • Yearly check-ins feel helpful, reliable   Note. This table explains how three final themes for reasons to trust the healthcare system were generated from various codes and indicates the number of instances for each theme.  There were two other responses that did not fit with the existing themes but did help further characterize the data. One participant reported that their trust was somewhat innate, stating, “I just believe in them.” While another reported that besides an attitude of acceptance, he “put [his] faith in God.” Belief That the System is Good. Participants who endorsed this theme indicated a belief that the system is innately trustworthy based on being high quality, fair, etc.   342 Belief in Own Ability to Navigate It. Participants who endorsed this theme in some way indicated that they trust the system because they in some way trust their own abilities (e.g., comfort with getting a second opinion, doing their own research, and/or their ability to deal with the bad and appreciate the good) to navigate the system successfully. Trust Based on Positive Experiences with Providers. Participants who endorsed this theme in some way indicated that because they had positive experiences (or had not had any negative experiences) that they could trust the system; this was often directly tied to positive experiences with specific health care providers. Table C5  Themes for Reasons Not to Trust the Healthcare System Due to Negative Experiences (x4) Information is Mixed (x2) Financial Reasons (x5) • Lack of trust due to negative experiences • Doing unnecessary procedures • System does not care • Hard to know who to trust • Media  • Insurance problems • Not enough benefits • It’s all about money • Will rip you off  Note. This table explains how three final themes for reasons not to trust the healthcare system were generated from various codes and indicates the number of instances for each theme.      343 One participant indicated that, although they did not trust the healthcare system, they put their faith in God instead. Because only one participant (a different participant from the one that indicated that they trusted the system but still put more trust in God) this did not reach a level of significance to be its own theme. Similarly, one participant indicated that he did not trust the healthcare system because he did not “trust too many people in the world.” Due to Negative Experiences. Much like its positive counterpart, this theme is related to the idea that having had past negative experiences influenced a participant’s perspective on the system as a whole. Lack of Trust Because Information is Mixed. This theme, though only endorsed by two participants, includes feeling like it is hard to know who to trust because information seems to be inconsistent (e.g., Covid safety recommendations); one of these participants indicated this was further fueled by the media. Financial Reasons. This theme is largely related to medical costs, not understanding or trusting health insurance to cover what is needed, and the belief that the system is more concerned with making money than with helping people.         344 RQ3.2: Do older rural African Americans trust their primary care providers? (QQ7) Table C6  Themes for Reasons to Trust Primary Care Providers  Based on Positive Experiences (x29) Good Communication & Follow-Up (x17) Have to Trust (x4) • Trust based on positive experiences • Provider improved their health • Understanding about money • Thorough • Quick to respond to needs • Provider cares about them • Polite • Long relationship • Efficient • Clear communication and information • They tell the truth • Checks up on patients • Reachable by phone for check-ins • Gives good treatment recommendations • No choice but to trust because you need their help • Trusts that they are knowledgeable  Note. This table explains how two final themes and one subthreshold theme for reasons to trust primary care providers were generated from various codes and indicates the number of instances for each theme.  All but one participant who responded indicated trust in their provider without indicating any reservations. The only participant to not do so indicated that it was because they did not always feel like they were being listened to by their provider. Even so, this   345 participant reported “partial trust.” The Have to Trust* theme was just below the threshold but is worth discussing because of the insight it provides into less tangible reasons for trusting health care providers. Based on Positive Experiences. This theme described the idea that people trusted their primary health care provider because of previous positive experiences or positive qualities they associate with that provider and/or their relationship with that provider. Good Communication and Follow-up. This theme was related to the idea that trust was earned through clear communication during appointments and/or during follow-up care, including explanations of diagnoses, medications, clear treatment recommendations, etc. “Have to” Trust. This (subthreshold) theme illustrated the idea that even if there are not specific, tangible reasons for trust, when you need care, you must see your provider; one participant specified that health care providers are the ones with the necessary knowledge to provide care.  RQ3.3: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they pursue treatment? (QQ8) Endorsed: 7 Denied: 38     346 Table C7  Themes for Impact of Trust or Mistrust Related to Provider (x2) Previous Treatment Unsuccessful (x2) Related to a Specific Procedure (x2) • Bad experience resulted in lack of trust in specific provider • Previous treatment unsuccessful • Declined to describe; related to invasive procedure • Mistrust in a procedure lead to not wanting to get it done  Note. This table explains how three final themes for impact of trust vs mistrust were generated from various codes and indicates the number of instances for each theme.   Due to the limited number of instances of participants endorsing some experience related to how mistrust impacted whether they sought treatment, only two instances of a theme were needed for it to be considered significant.  Related to Provider. This theme refers to instances where a negative experience with a provider led to a lack of trust, which led to them not seeking treatment from that provider again in the future.  Previous Treatment was Unsuccessful. This theme refers to instances where a past experience with an unsuccessful treatment led to a lack of trust in the effectiveness of future treatments. Related to a Specific Procedure. One additional theme that arose did not provide a response to the research question but did provide some additional nuance to how trust in general can play a role in healthcare decision-making. Two participants reported that their lack of trust had more to do with the procedure itself. One participant declined to provide any details other than that they declined   347 to get a colonoscopy, while another reported that they declined to get a biopsy after being warned that there could be negative side effects of the procedure because of what the biopsy was for. This participant reported that after this experience, they had more trust in their provider because he provided a clear description of the risks and benefits of the procedure. Two of the participants reported secondary issues (not better categorized under either of the two major themes). One participant reported that a lack of trust in the effectiveness of virtual exams during COVID led them to seek a new provider (their primary care provider at the time of their interview). Another participant who reported they had a past negative experience that led to them not trusting a specific provider and not returning to that provider indicated that part of the reason he had seen that provider in the first place was due to a change in his insurance. RQ3.4: How do older rural African Americans’ attitudes about the trustworthiness of the healthcare system and health care providers influence whether they adhere to medical recommendations? (QQ9) Endorsed: 2 Denied: 41  Because only two participants endorsed an experience where a lack of trust in either the health care system or a specific health care provider impacted their decision to adhere to specific treatment recommendations, those numbers were insufficient to consider them themes so much as stand-alone responses. Of these two responses, one participant indicated they did some research on their own and sought a second opinion from their pharmacist regarding a prescription because they felt uncertain about the medication itself.   348 However, after confirming with their own research and their pharmacist, they did end up following the treatment recommendation and had a positive outcome. This participant did not directly indicate that a lack of trust in the healthcare system or a health care provider led to their hesitance about the medication. Based on this participant’s report that she trusted the healthcare system and her primary health care provider, it is perhaps more accurate to say that she had concerns about the medication itself, but this was not clarified. The other reported that they stopped following a specific treatment recommendation (also medication related) after having an allergic reaction. For this participant, it would perhaps be more accurate to say that a negative experience with following a treatment recommendation led to not trusting the provider rather than a lack of trust leading to not following a treatment recommendation.  Communication Challenges and Solutions RQ4.1: What communication barriers do older rural African Americans experience when interacting with health care providers? (QQ10, QQ11, & QQ13 as well as responses in the negative to QQ12 & QQ14) Unclear information (QQ11) endorsed: 10 Unclear information (QQ11) denied: 35     349 Table C8  Themes for Unclear Communication  Participant Did Not Fully Understand Situation Insufficient Information Provided Provider Did Not Have All Information • Did not understand what doctor told them • Treatment did not make sense • Not enough information provided • Provider did not do enough testing • Provider was unsure what the problem was  • Treatment was for the wrong condition (did not have correct diagnosis at the time)  Note. This table explains how three themes for unclear communication were generated from various codes. Disagreements (QQ13) endorsed: 6  Disagreements (QQ13) denied: 38     350 Table C9  Themes for Reasons Why Participants Disagreed with Their Provider Disagreement About Specific Treatment Health Care Provider Not Addressing Participant Needs • Disagreement about specific treatment • Felt dismissed because same complaint multiple times (went unaddressed) • Provider attributed problems to mental health  Note. This table explains how two themes for reasons why participants disagreed with their provider were generated from various codes. Two participants noted that they had a disagreement with their provider but indicated that they still followed up with their provider to help address the issue. While these two instances would be sufficient to potentially warrant a theme, these responses did not address the research question of what communication barrier came up but instead spoke more to the next research question regarding how participants navigate these experiences. These participants elaborated on QQ14, and their responses were noted as they related to the RQ4.2. Another participant reported that they prayed about their disagreement regarding open heart surgery because they were hesitant, but the health care providers were insistent. Because this was only one instance and it did not belong with other themes, this was noted but not sufficient for the creation of an additional theme.  For the participants that endorsed a code from the initial theme of disagreeing about a specific treatment, one indicated that their disagreement was based on believing that the treatment was inappropriate for the specific medical issue they were having (their   351 same response from QQ11) and the other reported they thought they had other treatment options available. This necessitated some shuffling of codes for generating the final themes related to the research question at hand, such that one was coded recoded as “treatment did not make sense” and the other was coded as “thought other treatment options were available (not based on information from provider). How these new codes were distributed into a final collection of themes is shown below. Theme for Discomfort with Addressing Communication Problems with Providers. Only one theme was generated related to reasons for discomfort with addressing communication problems with provider emerged from the data. This theme was a combination of the power dynamic in the patient-provider relationship and concerns about not engaging in socially accepted behavior. This theme was created from codes created from participant responses to QQ12 & QQ14. This included the following codes: • Fear of retaliation • Can’t trust everyone (cannot trust how provider will respond) • Does not want to “get mean” with a provider Another notable change was the merging of the themes “Insufficient Information Provided” from responses to QQ11 and “Health Care Provider Not Addressing Participant Needs” from responses to QQ13. The internal logic that was followed is that this would organize the communication problems as being related to the four major components of patient-provider discussions: (1) the patient; (2) the provider; (3) the patient-provider social dynamic; and 4) qualities of the situation (usually a lack of diagnostic clarity at the time of the reported communication issue).   352 Table C10  Final Themes for Communication Barriers Patient Health Literacy (x5) Poor Communication by Provider (x4) Patient-Provider Relationship (x3) Situational Factors (x2) • Did not understand what doctor told them • Treatment did not make sense • Thought that other treatment options were available • Not enough information provided • Felt dismissed because same complaint multiple times (went unaddressed) • Provider attributed problems to mental health • Fear of retaliation • Can’t trust everyone (cannot trust how provider will respond) • Does not want to “get mean” with a provider  • Provider did not do enough testing • Provider was unsure what the problem was  • Treatment was for the wrong condition (did not have correct diagnosis at the time)  Note. This table explains how four final themes for communication barriers were generated from various codes and indicates the number of instances for each theme.  Patient Health Literacy. This theme refers to the patient’s personal health literacy, where they attribute the communication issue to not understanding what a health care provider told them, something not making sense to them, or them incorrectly assuming something.   353 Poor Communication by Provider. This theme refers to the provider in some way failing to communicate effectively with the patient due to either not providing enough information, not listening to patient concerns, or otherwise being dismissive in some way.  Patient-Provider Relationship. This theme refers to dynamics within the patient-provider relationship, including fear of retaliation, uncertainty about how the provider will respond to the patient’s concerns, and concerns about potentially being rude or being perceived as confrontational.  Situational Factors. This theme refers to issues in communication resulting from factors outside of patient-provider communication, usually involving a lack of diagnostic clarity at that point in the treatment (i.e., no one had enough information). While responses to QQ10 do not directly answer this research question, they do provide valuable context. Most participants (34) indicated that at least one of their sources of information regarding health and medical treatments was their health care providers (e.g., doctors, nurses, pharmacists, etc.). Of these 34, the vast majority (28) indicated that their health care providers were their only source of health information. Sources of information organized by frequency, from most common to least common:   354 • Health care providers (x34) • Online (x10) • Other people (x7) • Television (x6) • Books (x4) • Insurance provider (x1) • Radio (x1)  RQ4.2: Do older rural African Americans feel comfortable addressing communication problems with their health care providers? Why or why not? (QQ12 & QQ14) Comfortable asking for clarification: 45 Comfortable expressing disagreement: 44  Overall, participants reported very similar reasons for comfort with asking for clarification and expressing disagreement, so codes related to responses to both qualitative questions were considered together. As such, some of the listed codes have similar names because they capture the same phenomena but were taken from two different qualitative questions.    355 Table C11  Themes for Reasons Why Participants Felt Comfortable Addressing Communication Problems Comfort Based on Relationship (x10) Wants Health Care Provider to Know (x14) Expression of Bodily Autonomy (x12) Understand Own Health and Make Informed Decisions (x26) Part of Identity (x8) • Good relationship with provider • Comfortable because of long relationship • Comfortable because of long relationship with provider • Wants doctor to understand • Want provider to know • It's my decision • It's my health • I know my body • Will not proceed until understanding is reached • Wants to understand own health • Wants to understand risks • To get more testing or information • To reach shared understanding • Good to have a second opinion • Quality of participant • I would know if they were telling me the right things  Note. This table explains how five final themes for reasons why participants felt comfortable addressing communication problems were generated from various codes and indicates the number of instances for each theme.     356   Comfort Based on Relationship. In this theme, participants noted that the positive qualities of their relationship with their provider(s) help them feel comfortable addressing communication barriers Wants Their Health Care Provider to Know. In this theme, participants expressed that they want their provider to know how they are feeling or what they do and do not understand Expression of Bodily Autonomy. In this theme, participants expressed that addressing communication barriers was important because the outcome impacts them and they expressed ownership of themselves in some way (e.g., “it’s my body,” “it’s my health,” “it’s my decision”). Understand Own Health and Make Informed Decisions. In this theme, participants expressed that they wanted knowledge, wanted to understand their own health, and did not want to make decisions unless they had as much information as possible. Part of Identity. In this slightly rarer theme, participants expressed that they feel comfortable addressing communication barriers either due to the value they place on open communication or attributed the comfort to being “just how they care.”     357 RQ4.3: What can health care providers do to improve how they communicate with older rural African Americans? (QQ15) How many people noted that communication was already good without any prompting? 13 Table C12  Themes for Qualities of Good Communication Be Thorough and Clear (x25) Value Patient Perspective (x12) Human Element (x5) Outside of Appointments (x10) • Break it down • Explain options • Explain what to expect, possible outcomes • Provide sufficient information • Take more time • Tell the truth • Use plain language • Do not assume patients understand • Focus on patient care not money • Make it clear you CARE • Respect patients • Listen to patients • Ask the right questions • Be mindful of patient preferences • Face-to-face preferred • Stop putting telemarketers in the way • Call patient to discuss • Follow up about treatment • Give physical copies of information • Give reminders for appointments • Advocate with insurance companies  Note. This table explains how four final themes for qualities of good communication were generated from various codes and indicates the number of instances for each theme.    358 Be Thorough and Clear. This theme involves how providers communicate with patients, with a heavy emphasis placed on taking the time to provide thorough information about things and using clear, easy-to-understand language (expressive component). Value Patient Perspective. This theme involves how providers can make it clear that their patients’ perspectives matter with an emphasis placed on expressing interest, care, active listening, and respect (receptive component). The Human Element. This theme refers to the references that some participants expressed a preference for talking to another person; the specifics varied from participant to participant, but this included preference for in-person appointments and not having to deal with telemarketers or machines when you try to call a provider. Outside of Appointments. This theme refers to things that providers can do outside of scheduled appointments to facilitate good communication. Addressing Health Concerns and Treatment Barriers RQ5.1: What do older rural African Americans do to manage emerging health issues? (QQ16) Nothing: 1 Steps Taken: 45     359 Table C13  Themes for Methods of Managing Emerging Health Issues Gather Information (x9) Attempt to Treat on Own First (x9) Seek Medical Attention (x36) • Call doctor to ask questions • Do own research • Address on own (e.g., check blood pressure) when possible • Take medications / follow recommendations • Home remedies • Go straight to doctor to discuss • Go straight to ER • Make appointment with doctor • Go to doctor if it seems necessary  Note. This table explains how three final themes for methods of managing emerging health issues were generated from various and indicates the number of instances for each theme.  Gather Information. In this theme, participants reported that their first step was to try to get more information from their own research or through calling a health care provider to see what their next steps might be. Attempt to Treat on Own First. This theme included participants that tried in some way or another to address the emerging health issue on their own through good health monitoring, following existing recommendations (especially for issues they have encountered before), taking medications (prescribed or over the counter), and home remedies. Seek Medical Attention. This theme refers to when participants seek medical attention regardless of whether it was their first step or their last resort.   360 Additional Finding. Although not sufficient to warrant a separate theme, one participant reported that they pray when they are dealing with health issues. By this point, there are enough instances of faith coming up across questions that it is worth exploring as a standalone theme to see if all instances are coming from the same participant or multiple participants (see below). RQ5.2: How do older rural African Americans address treatment barriers? (QQ17)  Relatively little data was available to address this research question. This was in part because only 17 participants reported that they had an experience where they had a medical issue and chose not to seek treatment. Of those 17 participants, eight reported that they did not go because it felt unnecessary. This means that only nine participants reported an experience where they had a health issue that may have needed attention but chose not to seek treatment. This was consistent with seeking medical attention being such a prevalent theme regarding what steps participants take to address emerging health issues. The only theme that emerged from these data was that seven participants reported addressing the issue on their own either through medication or home remedies. This was also consistent with the theme of attempting to treat health issues on your own before seeking medical treatment (if necessary) regarding steps participants take to address emerging health issues.    361 Prayer / Faith as Standalone Theme  This theme did reach the instance threshold of five to be worth noting as a standalone theme, with six participants endorsing it. It is worth noting that this theme emerged in the absence of any interview questions that really focused on targeting how faith impacts health or health decision-making. Perhaps not surprisingly, most of the theme instances were in the context of uncertainty or anxiety about health issues or situations that could have negative health outcomes (e.g., Covid, high risk procedures, etc.).   362 APPENDIX D HUMAN SUBJECTS INSTITUTIONAL REVIEW BOARD APPROVAL  363

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