‘Are we allowed to disclose?’: a healthcare team's experiences of talking with children and adolescents about their HIV status

BACKGROUND: Talking with a child about their HIV status is a complex, emotionally laden and difficult task for caregivers and healthcare providers. Disclosure is an important process which may have psychosocial and health benefits. Despite existing guidelines and materials, disclosure does not always happen for various reasons. OBJECTIVE: This qualitative study explored a healthcare team's perspectives and experiences about disclosure practices. METHODS: Three focus groups were conducted with a total of 23 healthcare providers at a paediatric clinic in South Africa. The data were analysed using principles of thematic analysis. RESULTS: Results confirm the complexity of the disclosure process and highlight confusion, hesitancy and ethical dilemmas regarding disclosure practices. Tensions were noted within the team which seem linked to professional hierarchies. Counsellors and nurses preferred an indirect approach of encouraging caregivers to disclose to their children and providing psychosocial support, while doctors tended to become more directly involved in disclosing to children out of a sense of duty, legal responsibilities and knowledge of the child's rights. DISCUSSION AND CONCLUSIONS: This study demonstrates how the complexities of disclosure with children and adolescents bring about additional challenges for healthcare teams. The legal and ethical implications as well as the roles and responsibilities of healthcare providers with disclosure remain unclear. Several recommendations for practice and policy emerge from this study, related particularly to the need for clarification of disclosure guidelines and legal implications. Implications for the healthcare team are also discussed.