The content of disclosure messages to children with perinatal acquired HIV: Implications for disclosure interventions and guidelines for caregivers in resource-limited settings

Abstract

The World Health Organization’s guidelines on disclosure to children do not specify the content of messages communicated to the infected child. Consequently, there are no data on what caregivers tell children during disclosure. The aim of the study was to assess caregiver’s motivation for disclosure and examine the content of disclosure to perinatal infected children receiving antiretroviral treatment (ART). A qualitative design using focus group discussions was conducted with caregivers of children aged between 5-18 years accessing primary health facilities in Tshwane District, Gauteng Province, South Africa. The recorded interviews were transcribed and analyzed using thematic analysis. Disclosure occurred because of the caregiver’s perception that it would improve adherence to ART and in response to repeated questioning from the children about their illness or medication. Full disclosure occurred to all the children and disease specific information was based on caregiver’s limited HIV-related knowledge. The content of disclosure following the naming of the disease was defined by the reasons for disclosure. Disclosure included a discussion on the value of ART medications and the importance of adherence. Caregivers specified the source of HIV infection for children who wanted to know why and how they were infected and discussed the potential transmission of HIV to others for older children to protect future sexual partners from infection. Relying on the caregiver to disclose without support from healthcare workers has implications on what children are told during disclosure. Disclosure interventions should provide caregivers will biomedical information about HIV to provide factual information during disclosure to children.