Disclosure, concealment and exposure: how black immigrant men from East Africa living in the UK and their families manage communication about HIV-positive status

The aim of this study was to explore what it means for London-based, immigrant Black East-African men and their female partners to live with HIV. Few studies have been conducted on this issue with the present study population. The main thrust of existing research has been on preventing new infections, and work on living with HIV has mostly focused on groups in which the disease has a higher prevalence in developed societies, for example men who have sex with men. A modified grounded theory methodology underpinned by a symbolic interactionist theoretical framework was adopted. Data collection involved in-depth interviews with 23 participants, including: one HIV-negative man in a sero-discordant relationship; 11 HIV-positive men; six HIV-positive women, five of whom were partners of an HIV-positive research participant; and five workers from London-based community organisations offering HIV-related services accessed by Black Africans. Most (13/17) of the HIV-positive research participants opted to partially conceal their condition. In consequence, they faced an ongoing dilemma regarding whether to reveal their HIV-positive status to particular individuals. Disclosure could potentially unlock sources of social support, but also created the risk of stigmatization. But concealment meant forfeiting potential social support sources, and created risks of exposure. Four of the 18 research participants had eventually decided to ‘come out’ publicly in order to challenge stereotypes about HIV. They demonstrated that open communication about HIV-positive status can be a viable alternative to selective concealment and disclosure. The findings are used to develop practice and policy recommendations based on recognising social sensitivities around communicating HIV-positive status and other stigmatized attributes. Proposals are offered for developing further research, particularly comparative work which can help to clarify the impact of culture on disclosure of potentially stigmatizing personal information.