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Ties that Bind: HIV-Disclosure as Consequence and Catalyst of Stigma and Support in Households

Year: 2009
Working paper number: 266
Author: Mills, Elizabeth
Unit: ASRU

Disclosure positions the HIV-positive individual at the juncture of stigma and support. This paper explores some of the factors that prompt HIV-positive individuals to disclose to members of their household through a close appraisal of disclosure as a consequence and catalyst of stigma and support for people living with HIV. The paper draws on both quantitative and qualitative research conducted between 2004 and 2008 in Cape Town, South Africa. The quantitative data come from two longitudinal surveys conducted in Khayelitsha, a township on the eastern periphery of Cape Town: a panel study conducted with a cohort of HIV-positive people on antiretroviral treatment and a second panel conducted with a control group comprising a matched sample of residents. The qualitative research includes participant observation and in-depth narrative interviews with thirty key informants and health care providers. The findings centre on two key aspects of disclosure within households: the process of disclosure, and the dynamics  of disclosure, stigma and support. The quantitative findings indicate high levels of disclosure within households; we propose that this is a consequence of high levels of support and low levels of perceived stigma within families, notwithstanding higher levels of perceived stigma in the general population. The qualitative findings problematise some of the quantitative findings and indicate that disclosure was not only met with positive and supportive responses from household members, but that it has also catalysed stigmatising responses, particularly from parents within the household. These initial responses, however, shifted over time as individuals became more aware of the prevalence of HIV, and started to dissociate the virus from conceptions of promiscuity and death. The respondents in the qualitative study indicated a concern that disclosure would threaten supportive relationships among co-residential kin; in order to garner support and mitigate against stigma within their household, the respondents in  the qualitative study first 'tested out' responses by disclosing to extended family on the periphery of their close social networks. This points to the nature of disclosure as an incremental process, rather than a once-off event. This paper argues that relationships within households are dynamic and change over time, and therefore that the catalysts of disclosure also take new form within relationships in households, and in the broader community.

Publication file: WP266.pdf