IntroductionAs adolescents living with HIV gain autonomy over their self-care and begin to engage in sexual relationships, their experiences of being informed about their HIV status and of telling others about their HIV status may affect their ability to cope with having the disease.MethodsIn 2010, we conducted a qualitative study among adolescents aged 10–19 living with HIV in Zambia, and with their parents and health care providers. Through interviews and focus group discussions, we explored the disclosure of HIV status to adolescents living with HIV; adolescents’ disclosure of their status to others; and the impact of both forms of disclosure on adolescents.ResultsOur study identified three main barriers to disclosure of HIV status: local norms that deter parents from communicating with their children about sexuality; fear of HIV stigma; and an underlying presumption that adolescents would not understand the consequences of a HIV diagnosis on their lives and relationships. With regard to adolescents’ disclosure of their HIV status to their sexual partners, our study identified fear of rejection as a common barrier. In rare cases, open family conversations about HIV helped adolescents come to terms with a HIV diagnosis. Findings indicated that disclosure had various outcomes at the individual and interpersonal levels. At the individual level, some adolescents described being anxious, depressed and blaming themselves after being told they had HIV. At the interpersonal level, disclosure created opportunities for adolescents to access adherence support and other forms of psychosocial support from family members and peers. At the same time, it occasionally strained adolescents’ sexual relationships, although it did not always lead to rejection.ConclusionsThere is a need for public health interventions that guide adolescents living with HIV, their parents and families through the disclosure process. Such interventions should help parents to assess and understand the evolving cognitive capacity and maturity of their adolescents in order to determine the appropriate time to inform them of their HIV-positive status. Such interventions should also mitigate the risk of HIV stigma, as well as local norms that may prevent discussions of sexuality within families. Adolescents who have been informed of their HIV status should be provided with on-going support to prevent disclosure from negatively affecting their psychological and sexual wellbeing. Further research is needed to explore the potential role of trusted family members in contributing to the disclosure process.

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A rights-based approach in HIV service delivery for adults is increasingly taking root in sub-Saharan Africa in the context of greater availability of antiretroviral therapy. Yet there has been comparatively little progress in strengthening a rights-based approach to adolescent HIV services, which we learned during a qualitative study in 2010 among 111 adolescents living with HIV, 21 parents and 38 health providers in three districts in Zambia. Adolescents in the study expressed a range of information and support needs and wanted locally relevant interventions to meet those needs. They wanted greater access to HIV, sexual and reproductive health information, information on how to protect themselves, privacy and confidentiality in service sites, skills training so as to be able to earn money, and better control over disclosure of their HIV status to others. Both health workers and parents acknowledged that information and services needed to be improved to meet those needs far better. This paper provides examples of successful programmes in Zimbabwe, Uganda, Tanzania, Botswana and South Africa and calls for adolescent services to be linked to both paediatric and adult services, peer networks to be established to increase adolescents' ability to collectively voice their concerns and support each other, interventions supporting adolescents' control over self-disclosure, and lastly that adolescent health should become a training specialty in sub-Saharan Africa.