Patterns of HIV Diagnosis Disclosure to Infected Children and Family Members: Data from a Paediatric Antiretroviral Program in South Africa

The study examined the patterns of disclosing the HIV diagnosis to infected children and family members, and determined the demographic characteristics associated with disclosure. Semi structured interviews were conducted with caregivers of HIV infected children aged 4 - 17 years receiving antiretroviral treatment (ART). A total of 149 caregivers were recruited from a paediatric HIV clinic of a district hospital in South Africa. Caregivers reported that 59 (39.6%) children were told their HIV diagnosis, and majority 36 (61%) were informed of the diagnosis by people other than their biological mothers. Older child age was a determining factor for HIV disclosure to children, 22 (37.2%) learned of their HIV diagnosis between 11 and 16 years. The mean age of disclosed children was 10.6 years. Caregivers took about 3 years after the initial HIV diagnosis to disclose to children, while 143 (99.3%) caregivers reported that disclosure to family members happened immediately after the child's HIV diagnosis. About 28 (31.5%) non-disclosed caregivers planned to disclose to the child between 12 and 18 years, while 13 (14.6%) were not sure about the ideal age to disclose to the child. The lack of consensus regarding the appropriate age for disclosure and the delayed age for future disclosure, suggest that despite increased access to ART for children, there are still significant barriers to disclosing HIV to infected children in this setting. There is a need for health care providers to support caregivers to disclose shortly after diagnosis especially in view of the older age of diagnosis among children enrolled in ART program in this setting.