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Why do people disclose their HIV status? Qualitative evidence from a group of activist women in Khayelitsha

Year: 2006
Working paper number: 163
Author: Almeleh, Colin
Unit: ASRU

This study explores the bio-psychosocial context of HIV/AIDS in which eleven HIV-positive activist women from Khayelitsha negotiate the process of disclosing their HIV-positive serostatus to significant others, specifically biological household members. The study is based on the narratives of a group of HIV-positive peer-educators in Cape Town, South Africa. The results suggest that people's perceptions of HIV/AIDS are shaped by a wide variety of factors including: the context-laden nature of HIV/AIDS stigma in their communities; their understanding of the source of illness and misfortune; the prevalence of AIDS-denialism in South Africa; the availability of life prolonging highly active antiretroviral therapy (HAART), and their exposure to 'treatment literacy' and HIV/AIDS-education initiatives. The decision to disclose HIV status to others occurs within this shifting web of meanings, and in turn, reshapes them as people respond to the person who has just disclosed.  Eight out of the eleven women disclosed to a close biological household member (significant-other) as significant-others provided, or had the potential to provide the appropriate support. Six of the eleven participants disclosed during the symptomatic phases of HIV/AIDS, while five were asymptomatic at the time. Four of the five who disclosed when asymptomatic were diagnosed while pregnant and had never experienced severe opportunistic infections. Additionally, these same four disclosed some time after diagnosis (nine months > t < two years). Of the six who disclosed in a state of ill-health, five disclosed immediately after diagnosis. At this time, concerns regarding health and mortality superseded fears of rejection and discrimination due to AIDS-related stigma. The perceived potential benefits (social and health-related support) outweighed the perceived risks (stigmatisation and discrimination). When participants had never experienced serious illness, they disclosed in order to educate loved-ones, gain emotional support or challenge false popular perceptions of HIV/AIDS. The motivations for disclosure and the choice of recipients are based on a complex and subjective combination of countering false popular perceptions of HIV/AIDS, and accessing appropriate treatment, care and support.

Publication file: wp163.pdf