Why do People Disclose their HIV Status? Qualitative Evidence from a Group of Activist Women in Khayelitsha

Abstract

This study explores the bio-psychosocial context of HIV/AIDS in which eleven HIV-positive activist women from Khayelitsha negotiated the process of disclosing their HIV-positive status 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 community perceptions of HIV/AIDS are shaped by a wide variety of factors particular to the socio-cultural and political context of HIV/AIDS in South Africa. The process and outcomes of disclosure 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 as these 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 in order to access health-related social support. At this time, concerns regarding health and mortality superseded fears of rejection and discrimination due to AIDS-related stigma.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.