Constrained but not determined by stigma: Resistance by African American women living with HIV

Background: HIV stigma is widely regarded as a major obstacle to effective HIV prevention, risk reduction, testing, and treatment. Research is urgently needed to anticipate, understand, and combat HIV stigma in the African American cultural context because African Americans have the highest HIV incidence, HIV/AIDS prevalence, and HIV mortality. Purpose: The purpose of this analysis was to explore African American women's narratives of living with HIV to understand how they experienced and responded to HIV stigma. Method: Twenty-nine HIV-infected-African American women participated in this longitudinal qualitative study. Each narrated her life since HIV diagnosis in ten open-ended interviews conducted over the course of two years. A multi-staged narrative analysis was used. Findings: HIV stigma, which these African American women experienced on multiple levels, manifested internally as existential despair, socially as shunning and callousness, and institutionally as disregard. While participants were constrained by this multi-layered hegemonic cultural negativity about HIV, they refused to be determined by it. Their stories demonstrate how they resisted stigma. Over time, by enlisting support, facing the illness, disclosing only at strategic times, redefining stigma as ignorance, and becoming advocates, they were able to challenge and oppose the shame and discredit that HIV infection had brought into their lives. Conclusion: The elements of stigma resistance described in this study may be starting points for designing participatory interventions for and with African American women living with HIV.