Barriers to disclosure to children with HIV

Research suggests that it is healthy for children with chronic illness to discuss their illness, but clinical experience and research indicate that this seldom occurs. The purpose of this study was to identify barriers which prevent primary caregivers from discussing HIV/AIDS with children, and ways in which medical and community services could facilitate this process. Focus groups were performed with seventeen primary caregivers of children with HIV seen for care at Chris Hani Baragwanath Hospital in Soweto, South Africa in 2001. The study revealed that primary caregivers of children with HIV typically do not disclose HIV status to their children, despite the fact that these children often ask questions about their illness. For reasons including stigma, lack of knowledge and skills, and emotional unpreparedness, primary caregivers feel uncomfortable discussing HIV and illness with children. Health care and social service providers could facilitate disclosure of illness to children with HIV.