An Exploration of Social Relationships over the Life Course among African American Women Aging with HIV. By Elizabeth Deanne Moore Program in Nursing Duke University Date:_______________________ Approved: ___________________________ Janice Humphreys, Supervisor ___________________________ Michael Cary ___________________________ Sharron Docherty ___________________________ Christina Meade Dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Program in Nursing in the Graduate School of Duke University 2017 ABSTRACT An Exploration of Social Relationships over the Life Course among African American Women Aging with HIV. By Elizabeth Moore Program in Nursing Duke University Date:_______________________ Approved: ___________________________ Janice Humphreys, Supervisor ___________________________ Michael Cary ___________________________ Sharron Docherty ___________________________ Christina Meade An abstract of a dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Program in Nursing in the Graduate School of Duke University 2017 Copyright by Elizabeth Moore 2017 Abstract Introduction: In the fourth decade of the HIV epidemic, African American women continue to be disproportionately affected by HIV across all age ranges in the U.S. African American women make up only 13% of the female population in the U.S. yet account for 64% of HIV infections among women (Aitcheson et al., 2014). African American women face multiple challenges that intersect to influence how they effectively age into older adulthood and manage their health. Due to the increased challenges experienced by older African American women across the life course, it is imperative to identify factors that may mitigate the challenges of aging with the disease. Scant research exists focusing specifically on older African American women with HIV and thus our understanding of their experiences is still quite limited. Examining the personal strengths and social resources utilized to curb the deleterious effects of aging is necessary to improve health and well-being in this population. Purpose and Methods: The purpose of this dissertation was to advance our understanding of the experiences of African American women with HIV aging across the life course with particular attention paid to the influence of the role of social relationships on health and well-being. The purpose was achieved through exploring the challenges of aging with HIV as an African American woman and the importance of utilizing the life course perspective (Elder & Giele, 2009) to explore their experiences over time; examining the literature on the relationship between social relationships and health; and presenting two papers from the findings of a qualitative descriptive study iv conducted with older African American women that explored their experiences over the life course. Eighteen African American women over the age of 50 participated in this qualitative study that utilized in-depth life history interviews and timelines as the primary means of data elicitation. In the first paper, we analyzed the data for experiences with social relationships across the life course. In the second paper, we analyzed trajectories and turning points across the life course. Results: Findings from the first paper highlight that developing and maintaining relationships over time was influenced by a variety of life course themes at the personal, relational, and structural level presented over three developmental time periods (childhood/adolescence, young/middle adulthood, and older adulthood). Women described tremendous barriers to relationship development and maintenance in both childhood/adolescence and young/middle adulthood including child sexual abuse, crack cocaine addiction, intimate partner violence, and HIV-related stigma. Women also reported having large social networks in younger years but not many important relationships. In contrast, older adulthood was described as a time with more positive social relationships, especially for those who were addicted to crack cocaine in their youth. As women aged, they built supportive networks with people they valued. Findings from the trajectories and turning points paper show that while trajectories across participants were diverse, they were categorized into three main patterns: anchored; early struggling and upward progression; and continuously struggling. Life experiences were most dissimilar between women who experienced crack cocaine addiction compared to women who never used to drugs. The syndemic v impact of substance abuse, violence, and HIV (Singer, 2009) was also important as was the cyclical nature of these co-occurring epidemics over time. Our study provides evidence that a traumatic event in early life may be the first step in the syndemic cycle. vi Dedication For Rob C. Schmidt (1982-2012), who could not be here for the journey, but who opened the door for this opportunity. iv Table of Contents Abstract .......................................................................................................................................... iv Dedication ..................................................................................................................................... iv List of Tables ................................................................................................................................. ix List of Figures ................................................................................................................................ x Acknowledgements ..................................................................................................................... xi 1. Introduction ............................................................................................................................... 1 1.1 Problem ................................................................................................................................ 1 1.1.1 Health Disparities within the HIV Epidemic ........................................................... 3 1.1.2 The Challenges of Aging with HIV ........................................................................... 5 1.2 The Role of Social Relationships in Aging with HIV ..................................................... 7 1.3 Conceptual Framework: Life Course Perspective .......................................................... 9 1.3.1 Strengths of Life Course Perspective ...................................................................... 12 1.3.2 Life Course Perspective to Study African American Women Aging with HIV 13 1.4 Approach ............................................................................................................................ 17 1.5 Purpose Statement and Aims .......................................................................................... 18 2. Social Relationships as a Social Determinant of Health to Promote Health and Health Equity in African American Women Living with HIV ......................................................... 20 2.1 Social Relationships at the Core of the Social Context ................................................ 22 2.1.1 Social Relationships and Social Inequity ................................................................ 26 2.2 Social Capital in the Social Context ................................................................................ 27 2.2.1 Social Capital and Social Inequity ........................................................................... 29 v 2.2.2 Who Has Social Capital? ........................................................................................... 30 2.3 Measuring Social Relationships and Social Capital ..................................................... 32 2.4 The Social Context of Older African American women with HIV ............................ 33 2.4.1 Barriers to Social Relationships and Social Support ............................................. 34 2.4.2 Constrained Social Capital ....................................................................................... 38 2.5 Conclusion ......................................................................................................................... 40 3. Social Relationships Across the Life Course in Older African American Women with HIV ................................................................................................................................................ 41 3.1 Conceptual Framework .................................................................................................... 44 3.2 Approach ............................................................................................................................ 46 3.2.1 Design and Sampling ................................................................................................ 46 3.2.2 Data Collection ........................................................................................................... 48 3.2.3 Ethics ............................................................................................................................ 50 3.2.4 Data Management ...................................................................................................... 50 3.2.5 Data Analysis .............................................................................................................. 50 3.3 Findings .............................................................................................................................