Navigating pediatric HIV status disclosure: a phenomenology among Ghanaian home caregivers of children living with HIV

Limited information is available regarding caregivers’ experiences with disclosing HIV status to children in Northern Ghana. Our study aimed to investigate the prevalence and reasons for pediatric disclosure. We conducted a descriptive phenomenological study with caregivers of children living with HIV in three hospitals. In-depth individual interviews were conducted until data saturation was reached after the 9th participant interview, using a semi-structured interview guide. Rigorous methods were employed, including member checking, peer debriefing, and prolonged field stay. The results revealed four main themes and seven sub-themes: (1) lack of disclosure to children living with HIV, (2) reasons for non-disclosure to children, (3) selective disclosure to others, and (4) reasons for non-disclosure. The findings suggest low levels of disclosure to children and others, which may impact ART adherence, viral load suppression, and support for children. The study highlights the need for improved clinical disclosure interventions for healthcare workers and caregivers.