Understanding caregivers' experiences of disclosure to HIV-positive children.
Sokhela, Zinhle Pretty.
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South Africa has the highest burden of the HIV/AIDS epidemic in the world, with a large number of peri-natally infected children. With the advent of antiretroviral treatment, these children are now able to live into adolescence, adulthood and old age. With this longevity comes the responsibility of disclosing the child‟s HIV-positive status to them so that they can begin to take responsibility for their health and well-being, as well as protect others from possible HIV infection. The research aimed to understand caregivers‟ views on the process of disclosure of a child‟s HIV status to the child, to develop an understanding of factors that promote disclosure, as well as the impact of disclosure on the child. This study used a qualitative design. Semi-structured qualitative interviews were held with ten participants who were caregivers to HIV-positive children. The participants were recruited through the Vuka Family Programme: Supporting Health and Behavior of South African HIV+ Youth. Inclusion criteria were that participants had to have disclosed their status to their HIV-positive children. Thematic analysis, specifically the framework approach, was used to analyse the data. Findings from this study show that disclosure is not an easy task to undertake, with caregivers needing help on how to disclose; however, it reportedly had benefits for the child, such as improved levels of adherence. Factors promoting disclosure included children questioning the medication that they were taking and pressure from clinicians to disclose. Factors hindering disclosure included fear of stigma and discrimination against the child, as well as shame, guilt and embarrassment among the biological caregivers. The need for the introduction of HIV disclosure guidelines for clinicians and caregivers of children living with HIV is recommended, to assist in making the process of disclosure easier.