Quality of Life, Health-Related Stigma, and the Social Context: Longitudinal Analyses of PLWHA in Uganda and a Literature Review

Abstract

The dissertation examines the experience of living with stigmatized health conditions in the social context. The first paper examines the dynamic, bi-directional relationship between social support and HIV-related stigma. I use data from a prospective cohort of people living with HIV/AIDS (PLWHA) initiating antiretroviral therapy in rural Uganda. I use multilevel regression to model the contemporaneous and time-lagged relationships between two dimensions of stigma and social support. The results suggest that the two dimensions of stigma may compromise the ability to maintain and access social support. I also found that social support may be protective against future experiences of discrimination. The second paper examines the trajectory and determinants of health-related quality of life (HRQOL) of PLWHA initiating antiretroviral therapy. Using the same data set as paper one, I compared two types of multilevel models for change in which HRQOL is specified as linear and quadratic functions of time. Analyses indicated that HRQOL follows a quadratic trajectory that is concave to the time axis. Self-reported symptoms, food insecurity, and HIV-related stigma are negatively correlated with HRQOL, suggesting the importance of addressing social and economic situations of PLWHA in addition to clinical symptoms. The third paper is an interdisciplinary review of health-related stigma. The social psychology literature describes stigma as a product of individual traits and personalities that has roots in the biological instinct to avoid poor partners of social exchange. In contrast, the historical, anthropological, and autobiographical literatures highlight the role of social forces outside of the individual in the production of stigma. I argue that health-related stigma is based on the ever-changing understandings about disease causality that reflects contemporary ideas about morality. Further, stigmatization is contingent on a social structure in which differential access to social, economic and political power determines who is stigmatized. Finally, stigmatization dehumanizes individuals who are already vulnerable, and erects barriers to health and social resources to further exacerbate social inequalities. Therefore, health-related stigma should not be used as a tool to promote public health, and societal efforts should focus on eliminating health-related stigma.