Courage and confidence to stop lying: caregiver perspectives on a video to support paediatric HIV disclosure in Kampala, Uganda

Abstract

The World Health Organization (WHO) recommends that HIV-positive children are told their diagnosis by age 12 years. However, most perinatally-infected children reach adolescence without being told their HIV status. Effective strategies are needed to promote disclosure, and optimise children’s health outcomes as they transition to adolescence and adulthood. This qualitative study explored how caregivers of HIV-positive children aged 7–12 years perceived and related to a video used as part of a larger behavioural intervention to promote full disclosure to children by age 12 years. Eight semi-structured interviews and 3 group reflection sessions with 28 caregivers were analysed thematically. Five themes were generated: courage and confidence; reasoning and empathy; child– caregiver relationship; foreign but relatable; and not reaching everyone. The video was found acceptable and appropriate for fostering readiness to disclose. Through watching it, participants reported they could see people similar to themselves prevail despite challenges, which gave them courage.