Extent of disclosure: what perinatally HIV-infected children have been told about their own HIV status.

How and when to disclose a positive HIV diagnosis to an infected child is a complex challenge for caregivers and healthcare workers. With the introduction of antiretroviral therapy, pediatric HIV infection has transitioned from a fatal disease to a lifelong chronic illness, thus increasing the need to address the disclosure process. As HIV-infected children mature, begin to take part in management of their own health care, and potentially initiate HIV-risk behaviors, understanding the nature of their infection becomes essential. Guidelines recommend developmentally appropriate incremental disclosure, and emphasize full disclosure to school-age children. However, studies from Sub-Saharan Africa report that disclosure to HIV-infected children is often delayed. Between 2013 and 2014, 553 perinatally HIV-infected children aged 4-9 years were enrolled into a cohort study in Johannesburg, South Africa. We assessed the extent of disclosure among these children and evaluated characteristics associated with disclosure. No children aged 4 years had been told their status, while 4% of those aged 5 years, and 8%, 13%, 16%, and 15% of those aged 6, 7, 8, and 9 years, respectively, had been told their status. Age was the strongest predictor of full disclosure (odds ratio 1.6 per year, p = .001). An adult living in the household who was unaware of the child's status was associated with a reduced probability of disclosure, and knowing that someone at the child's school was aware of child's status was associated with an increased probability of disclosure. Among caregivers who had not disclosed, 42% reported ever discussing illness in general with the child, and 17% reported ongoing conversations about illness or HIV. In conclusion, a small minority of school-age children had received full disclosure. Caregivers and healthcare workers require additional support to address disclosure. A broader public health strategy integrating the disclosure process into pediatric HIV treatment programs is recommended.