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UCLA Electronic Theses and Dissertations UCLA UCLA Electronic Theses and Dissertations Title HIV-Related Stigma, Social Support, and Access to Care among People Living with HIV in Rural Anhui Province, China Permalink https://escholarship.org/uc/item/4xf6v038 Author Lan, Chiao-Wen Publication Date 2018 Peer reviewed|Thesis/dissertation eScholarship.org Powered by the California Digital Library University of California UNIVERSITY OF CALIFORNIA Los Angeles HIV-Related Stigma, Social Support, and Access to Care among People Living with HIV in Rural Anhui Province, China A dissertation submitted in partial satisfaction of the requirements for the degree Doctor of Philosophy in Community Health Sciences by Chiao-Wen Lan 2018 © Copyright by Chiao-Wen Lan 2018 ABSTRACT OF THE DISSERTATION HIV-Related Stigma, Social Support, and Access to Care among People Living with HIV in Rural Anhui Province, China by Chiao-Wen Lan Doctor of Philosophy in Community Health Sciences University of California, Los Angeles, 2018 Professor Chandra L. Ford, Chair Background People living with HIV/AIDS (PLWHA) in rural Anhui Province, China, face tremendous challenges, including HIV-related stigma and lack of social support; but it is unclear exactly how these two factors influence access to healthcare. The purpose of this dissertation is to explain the association between HIV-related stigma and social support relative to access to care in a sample of HIV-infected men and women in rural Anhui Province, China. This study has two distinct parts. The first part is a quantitative study. It examines (a) whether the two dimensions of HIV- related stigma ––perceived stigma and internalized shame ––are associated with access to care among HIV-positive men and women in rural Anhui Province, China, and (b) whether the three dimensions of social support (i.e., emotional support, tangible support, and affectionate support) are associated with access to care among the same population. The second part of the dissertation ii is a critical performance based on ethnodrama strategies as applied to the issue of HIV-related stigma in this region. Conceptual Model This study is guided by Andersen’s Behavioral Model of Health Services Use with concepts of stigma borrowed from Bruce Link and Jo Phelan as well as Gregory Herek. Sample This study used the baseline data of a randomized controlled intervention trial for HIV-affected families in four rural counties in Anhui Province, China. The 32 villages included in Anhui Province were all rural and poor; the residents were primarily farmers. A total of 522 PLWHA aged 30 to 73 years were included. Most of the PLWHA acquired HIV infection through commercial plasma donation in the 1990s. Data Collection The data were from Together for Empowerment Activities (parent study). The baseline data were collected between October 2011 and March 2013. All of the data were obtained via computer- assisted personal interviewing (CAPI), which was administered by the trained research staff. The trained research staff asked the respondents questions and entered the data directly into a computer database. Measures iii The main outcome of the quantitative study was access to care. The primary predictor variables were HIV-related stigma and social support: the two dimensions of HIV-related stigma (perceived stigma and internalized shame) and the three dimensions of social support (emotional, tangible, and affectionate support). In addition to demographic variables (age, gender, marital status, educational level), family characteristics (e.g., family annual income) were also included. Analysis This was a cross-sectional secondary analysis. Univariate analyses were performed to examine the variables. Descriptive statistics and frequencies were calculated to explore bivariate associations and the sample demographics. The main analyses involved mixed-effects linear regression models to identify predictors of access to care, controlling for demographic characteristics. The descriptive analyses were carried out to explore variable characteristics and bivariate associations. To account for the clustering structure, mixed-effect models with village- level random effects were used to account for the clustering effects within a village. Mixed- effects models were employed to ascertain the extent to which the two dimensions of HIV- related stigma and the three dimensions of social support were associated with access to care, while simultaneously controlling for confounders. Performance Methods Based on Conquergood’s five areas of performance studies as well as ethnodrama’s strategies, six elements were included in the program: movement, original text, quotes from people living with HIV/AIDS, and spectacle such as photographs, set, and props. Results iv Quantitative study. Levels of perceived stigma and tangible and affectionate support were associated with access to care. In the main analyses, higher levels of perceived stigma were significantly associated with lower levels of access to care (estimated difference = – 0.08, p = 0.015). Conversely, internalized shame was not associated with access to care (estimated difference = –0.01, p = 0.691). Higher levels of affectionate support were associated with higher levels of access to care (estimated difference = 0.43, p < 0.0001). Conversely, tangible support was negatively associated with access to care (estimated difference = – 0.17, p = 0.003). However, emotional support was not associated with access to care (estimated difference = 0.03, p = 0.373). Depressive symptoms remained negatively associated with access to care while controlling for demographic variables (estimated difference = – 0.10, p < 0.001). Performance. The performance took place on January 26, 2018, at Kaufman Hall at the University of California, Los Angeles. The performance lasted 25 minutes, followed by questions and discussion for 10 minutes, and a dessert reception afterward. Discussion Quantitative study. This study underscores the complexity of HIV-related stigma and social support relative to access to care in rural Anhui Province, China. The findings from the research offer guidance about the dimensions of HIV-related stigma and social support to target in future intervention research. Performance. In addition to the quantitative analysis, the performance shows that it has the capacity to convey information about these issues in ways that tap into affects and emotions. v Future research should explore ways to build on performance in generating awareness about these issues that warrant further exploration. Conclusions Levels of perceived stigma may impact access to care among PLWHA in rural Anhui Province, China. Future study should explore how programs incorporating social support and psychosocial components may defer the adverse effects of the disease for PLWHA in this region. By elucidating the complex relations between HIV-related stigma, social support, and access to care among PLWHA in rural Anhui Province, China, this dissertation highlights implications for HIV-related stigma and social support. Using performance as a method of communicating research provided opportunities to innovate in non-traditional research dissemination, and it could have implications for fostering dialogue between the researchers and the community. vi The dissertation of Chiao-Wen Lan is approved. David H. Gere Jessica D. Gipson Li Li Donald E. Morisky Chandra L. Ford, Committee Chair University of California, Los Angeles 2018 vii TABLE OF CONTENTS CHPATER ONE INTRODUCTION TO THE DISSERTATION 1.1. Purpose ........................................................................................................................... 1 1.2. Statement of Problem ..................................................................................................... 1 1.3. Specific Aims ................................................................................................................. 2 1.4. Significance .................................................................................................................... 3 1.5. Overview of Dissertation ................................................................................................ 5 CHPATER TWO LITERATURE REVIEW 2.1. Overview ....................................................................................................................... 7 2.2. Brief History of HIV Epidemic in China ...................................................................... 7 2.3. HIV-related Stigma: Overview of the Literature ......................................................... 10 2.4. Social Support among HIV-positive Individuals ........................................................ 18 2.5. Access to Healthcare in Rural Anhui, China ............................................................... 20 2.6. Performance in Public Health ..................................................................................... 24 2.7. Gaps in the Literature ................................................................................................... 26 2.8. Summary ...................................................................................................................... 29 CHAPTER THREE THEORETICAL FRAMEWORK & SPECIFIC AIMS 3.1. Overview ...................................................................................................................... 30 Quantitative Analysis 3.2. Constructs of Stigma .................................................................................................... 30 3.3. Andersen’s
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