Selective disclosure of HIV-positive status in the era of HAART. Perspectives of immigrant Black African men, and their families, in the UK.

John Owuor1, Abigail Locke2, Bob Heyman2, Andrew Clifton2,
Affiliates: 1Karolinska Institute, Stockholm, Sweden 2University of Huddersfield, Huddersfield, UK

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Black Africans, individuals who identify themselves as Africans either by birth or descent, make up less than 1% of the UK population. But they are the heterosexual group most affected by HIV in the UK, and the whole of Western Europe. HIV-infected individuals who test early enough for the disease and have access to treatment can now aspire to a near normal lifespan due to advances in HIV treatment. Health promoters encourage disclosure of HIV-positive status to social networks to facilitate access social support and to prevent onwards transmission. However, little is known about how affected families deal with daily life with HIV. In most western European countries, HIV testing and treatment are free yet Black Africans continue to test very late for HIV and are prone to HIV-related mortality and morbidity. The current study explored the participants’ perceptions on what it means to live with HIV and how services can better serve such individuals.

This paper reports the findings of a qualitative study involving in-depth interviews with 11 HIV-positive men, 6 HIV-positive women, 1 HIV-negative man and 5 employees of HIV service-provider community organisations in London, UK. Data were analysed using grounded theory’s cyclic three-stage process; open coding, axial coding and selective coding.

Apart from HIV clinicians, the men and their partners, selectively revealed their HIV-positive status to carefully selected individuals while concealing it from the rest of their social networks. While they acknowledged the importance of disclosure of HIV-positive status in accessing social support, the relevant participants framed selective disclosure in terms of need. They disclosed when they perceived a need to do so, such as to access treatment, otherwise they concealed their status. The relevant participants argued that they were on successful HIV treatment, did not exhibit stereotypical markers of HIV such as severe weight loss and they did not have to reveal their disease to people who would not be of any help. The participants preferred to reveal their status to their HIV clinicians, sexual partners and selected close family members. The participants weighed between risking stigmatization versus social support and many opted for their confidentiality. But some of the participant discovered their status had been revealed exposed against their wishes. However, four of the participants were open about their HIV-positive status.

Whereas HAART has tremendously improved lives of HIV-positive individuals, the present findings suggest that for some individuals, successful treatment has invalidated the need for disclosure of their HIV status to their social networks. However, all the participants in the present study had revealed their status to their sexual partners. Thus selective disclosure of HIV status did not seem to create a risk of onward infection. But the apparent silence about HIV-positive status by the participants creates self-isolation and inhibit their access to and use of the wide range of available HIV services and social support, potentially leading to poor health outcomes for the affected individuals.