Disclosing HIV to Infected Children in South Africa in the Era of HAART: A Grounded Theory Study on the Process, Reasons and Outcomes of Disclosure

Abstract

South Africa has seen an increasing population of children and adolescents accessing antiretroviral treatment (ART) in the past seven years. Many of these children are at the age when they should know their HIV diagnosis. We used grounded theory to explore the process, reasons and outcomes of HIV disclosure to children accessing ART from a paediatric HIV clinic in South Africa. Twenty seven caregivers of children aged 6 - 13 years who were receiving ART participated in four focus group interviews. Four main themes, disclosure occurring as a process, asking HIV related questions, the right age to tell, and the child's reaction to the diagnosis emerged. Biological caregivers approached disclosure as a process; they planned and prepared for the disclosure event for a long time. Full disclosure occurred when the caregivers had dealt with their own personal fears over the child's diagnosis, resulting in disclosure being delayed to older age and adolescence. Non-biological caregivers disclosed impulsively to children and employed partial disclosure. Caregivers disclosed because of the child's refusal to continue taking medication or the child repeatedly questioned the reasons for taking medication. Caregivers also disclosed because it was the right time to disclose, and the right time was often when the child reaches adolescence. After learning about their HIV diagnosis children became more adherent to medication, they also ensured that their HIV infected biological caregivers were adherent too. Children kept their diagnosis secret from people outside their immediate families. The increased survival of children on ART in South Africa calls for concerted efforts from researchers and health care providers to develop disclosure guidelines to assist caregivers to disclose to children in a manner that promotes the wellbeing of the child.