Disclosure of HIV Diagnosis to HIV-Infected Children in South Africa: Focus Groups for Intervention Development.

Worldwide about 2.5 million children younger than 15 years of age are living with HIV, and more than 2.3 million of them live in sub-Saharan Africa. Antiretroviral therapy has reduced mortality among HIV-infected children, and as they survive into adolescence, disclosing to them their diagnosis has emerged as a difficult issue, with many adolescents unaware of their diagnosis. There is a need to build an empirical foundation for strategies to appropriately inform infected children of their diagnosis, particularly in South Africa, which has the largest number of HIV-positive people in the world. As a step toward developing such strategies, we conducted a study in Eastern Cape Province, South Africa to identify beliefs about disclosing HIV diagnosis to HIV-infected children among caregivers, health-care providers, and HIV-positive children who knew their diagnosis. We implemented 7 focus groups with 80 participants: 51 caregivers in 4 groups, 24 health-care providers in 2 groups, and 5 HIV-positive children in 1 group. We found that although the participants believed that children from age 5 years should begin to learn about their illness, with full disclosure by age 12, they suggested that many caregivers fail to fully inform their children. The participants said that the primary caregiver was the best person to disclose. The main reasons cited for failing to disclose were (a) lack of knowledge about HIV and its treatment, (b) the concern that the children might react negatively, and (c) the fear that the children might inappropriately disclose to others, which would occasion gossip, stigmatization, and discrimination towards them and the family. We discuss the implications for developing interventions to help caregivers appropriately disclose HIV status to HIV-infected children and, more generally, communicate effectively with the children to improve their health outcomes.