Experiences of South African caregivers disclosing to their children living with HIV: Qualitative investigations

Abstract

Awareness of Human Immunodeficiency Virus (HIV) status improves health outcomes in children living with HIV, yet caregivers often delay disclosure. This qualitative investigation explored, through observation, how 30 caregivers responded to a HIV Disclosure study conducted between 2017 and 2020 at Chris Hani Baragwanath Academic Hospital, Soweto, South Africa. Caregivers were assisted in disclosing to their children, aged 7–13 years; followed by a sub-sample of caregivers providing in-depth interviews to elaborate on findings.1) Barriers to disclosure included: caregivers being ill equipped, the fear of negative consequences and children considered lacking emotional or cognitive readiness. 2) Deflecting diagnosis from their children and the need for medication, motivated caregivers to disclosure. 3) Apprehension was evident during disclosure; however, overall disclosure was a positive experience with the support of the healthcare providers. These results highlight the significant role healthcare providers’ play in supporting caregivers through the disclosure process.