Managing and resisting stigma: a qualitative study among people living with HIV in South Africa

BACKGROUND: Living with HIV is of daily concern for many South Africans and poses challenges including adapting to a chronic illness and continuing to achieve and meet social expectations. This study explored experiences of being HIV-positive and how people manage stigma in their daily social interactions. METHODS: Using qualitative methods we did repeat interviewed with 42 HIV-positive men and women in Cape Town and Mthatha resulting in 71 interviews. RESULTS: HIV was ubiquitous in our informants’ lives, and almost all participants reported fear of stigma (perceived stigma), but this fear did not disrupt them completely. The most common stigma experiences were gossips and insults where HIV status was used as a tool, but these were often resisted. Many feared the possibility of stigma, but very few had experiences that resulted in discrimination or loss of social status. Stigma experiences were intertwined with other daily conflicts and together created tensions, particularly in gender relations, which interfered with attempts to regain normality. Evidence of support and resistance to stigma was common, and most encouraging was the evidence of how structural interventions such as de-stigmatizing policies impacted on experiences and transference into active resistance. CONCLUSIONS: The study showed the complex and shifting nature of stigma experiences. These differences must be considered when we intensify stigma reduction with context- and gender-specific strategies focussing on those not yet on ARV programmes.