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.
Highlights
Sub-Saharan Africa remains the region most heavily affected by HIV, of the estimated 3.4 million children under 15 years old living with HIV in 2010, 90% of them are in sub-Saharan Africa
The increased survival of children on antiretroviral treatment (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
Disclosing HIV to Infected Children in South Africa in the Era of HAART: A Grounded Theory Study on the Process, 325 Reasons and Outcomes of Disclosure sequently, only 12 of the 27 children were told about their diagnosis by biological mothers, the rest were disclosed to by nonbiological caregivers
Summary
Sub-Saharan Africa remains the region most heavily affected by HIV, of the estimated 3.4 million children under 15 years old living with HIV in 2010, 90% of them are in sub-Saharan Africa. With a massive roll out of antiretroviral treatment (ART), South Africa has seen an increasing population of children and adolescents accessing ART in the past seven years [3]. Many of the children who started ART in South Africa are at the age when they should know their HIV diagnosis. Recent data from a South African study conducted with caregivers of HIV infected children show an increase in the number of older children accessing ART. There is evidence from studies conducted in developed countries that issues regarding adherence to ART medication and the HIV diagnosis disclosure take on additional importance as children with HIV reach adolescence [5,6]. According to Domek [7] issues around adherence to ART medication, self-esteem and behavioural problems cannot be adequately addressed without HIV disclosure to infected children and adolescents. As HIV infected children reach adolescence, having information about their own disease becomes an essential part of HIV prevention within the larger population [6,8]
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