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Psychosocial needs of HIV-positive children on antiretrovirals: A survey of South African children's homes

Although the distribution of antiretroviral therapy (ART) is still far from adequate, where such therapy is accessible, HIV has largely been transformed from a fatal to chronic infection. The South African government began a national ART rollout in 2003, providing ART free to medically qualifying individuals. Institutions caring for HIV-positive children have since seen a significant increase in the life expectancies of the children for whom they care. These institutions are experiencing a major transformation from their original role as a hospice for sick and dying patients to a children's home raising relatively healthy children with a chronic illness. This anthropologically based research was done in Johannesburg, South Africa, using a social survey and semi-structured interviews conducted with administrators and caregivers from local children's homes. The specific aim was to assess the current state of children's homes caring for HIV-positive children and the psychosocial challenges they face. The 23 homes included in this study cared for a total of 1091 children; 35% of the children were HIV positive with 73% on ART. The majority of homes were facing new and important challenges. Disclosing a child's HIV infection was difficult with only 35% of homes reporting a formal disclosure policy. Education was a concern with most homes expressing a serious need for access to more remedial and special needs schools. Caring for the psychological well-being of children was a challenge with 39% of homes having no access to any form of counseling. Finally, a majority of homes (65%) did not have a plan in place for the children's eventual move from the institution. This study concludes that the provision of antiretrovirals would be best accompanied by a number of medical, psychological, educational, and social services that help prepare HIV-positive children for futures they only recently have been able to expect.