HIV status disclosure to families for social support in South Africa (NIMH Project Accept/HPTN 043)

Literature on HIV status disclosure among persons living with HIV/AIDS (PLWHA) is dominated by research on the rates, barriers and consequences of disclosure to sexual partners, because of the assumed preventive health benefits of partner disclosure. Disclosure of HIV status can lead to an increase in social support and other positive psychosocial outcomes for PLWHA, but disclosure can also be associated with negative social outcomes including stigma, discrimination, and violence. The purpose of this article is to describe the HIV status disclosure narratives of PLWHA living in South Africa. Thirty in-depth interviews were conducted with 13 PLWHA (11 women, 2 men) over a three-year period. We explored disclosure narratives of the PLWHA through questions about who they chose to disclose to, how they disclosed to these individuals, and how these individuals reacted. Narratives focused on disclosure to family members and contained relatively little discussion of disclosure to sexual partners. Participants often disclosed first to one trusted family member, and news of the diagnosis remained with this person for a long period of time, prior to sharing with others. This family member helped the PLWHA cope with the news of their diagnosis and prepared them to disclose to others. Disclosure to one's partner was motivated primarily by a desire to encourage partners to test for HIV. Two participants described overtly negative reactions from a partner upon disclosure, and none of the PLWHA in this sample described very supportive relationships with their partners after disclosure. The critical role that family members played in the narratives of these PLWHA emphasizes the need for a greater focus on disclosure to families for social support in HIV counseling protocols.