Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting

Objective: Adult caregivers provide children living with HIV with varying amounts and types of information about their health status that may affect their coping and health care behaviors. We aimed to describe patterns of information sharing with children and thoughts around disclosure among caregivers in the Democratic Republic of the Congo. Methods: A total of 259 primary caregivers of children aged 5 to 17 years in an HIV pediatric care and treatment program were screened; 8 adult caregivers (3%) had informed their child of the child's HIV status. We conducted structured interviews with 201 caregivers whose children had not yet been told their HIV status. Results: Nearly 50% of caregivers had provided no information to their child about their health; 15% had given partial information without mentioning HIV, and 33% provided information that deflected attention from HIV, whether deliberately so or otherwise. Almost all caregivers said that the child should be told their status some day, and three-fourths reported having ever thought about what might lead them to tell. However, nearly one-third of caregivers saw no benefits to informing the child of her/his HIV status. A majority of caregivers felt that they themselves were the best to eventually disclose to the child but some wanted support from health care providers. Conclusions: HIV-infected children are given limited information about their health. Health care providers may serve as important sources of support to caregivers as they decide when and how to talk candidly with their children about their health.