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.

This report was made possible through support provided by the President's Emergency Plan for AIDS Relief and the U.S. Agency for International Development (USAID) via HIVCore, a Task Order funded by USAID under the Project SEARCH indefinite quantity contract (Contract No. AID-OAA-TO-11-00060). HIVCore improves the efficiency, effectiveness, scale, and quality of HIV treatment, care, and support, and prevention of mother-to-child transmission (PMTCT) programs. The Task Order is led by the Population Council in partnership with Elizabeth Glaser Pediatric AIDS Foundation, Palladium, and the University of Washington. www.hivcore.org

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Tailored, one-on-one counseling delivered via cell phone was very effective in retaining mothers with HIV in care and in promoting infant HIV testing and antenatal and postnatal care attendance. The highest risk of loss to follow-up among women with HIV accessing PMTCT services was prior to delivery and then after infant HIV testing at 6 weeks. Challenges include continued limited access to cell phones, difficulty with reaching participants on the phone, and poor adherence to antiretroviral therapy for a substantial percentage of the population.

SUMMARYOf the 42 million living with HIV/AIDS world-wide some 90% live in developing countries. The international community acknowledges the devastating impact of HIV/AIDS on development and over the past few years resources to control HIV/AIDS have increased considerably. We argue that strengthening of health systems is a necessary prerequisite for improving the prevention of HIV infection and the care of HIV-infected persons. Sexual behaviour change requires a multidisciplinary approach, but health services play a crucial role in detection and treatment of other sexually transmitted infections; HIV counselling and testing; prevention of mother-to-child transmission of HIV; and care of HIV-infected patients. Increasing access to antiretroviral treatment especially poses formidable challenges to health authorities in developing countries. Additional resources for the prevention of HIV-infection and the care of HIV-infected persons may not have the desired impact if health systems in developing countries are not strengthened. Further, any activity in the area of HIV/AIDS prevention and care, carried out within health services, can have a positive ripple effect on other health care activities and vice versa. This interactive effect needs to be acknowledged and built on.