‘Mummy told me that I have HIV, that is the only thing she told me’: Experiences of HIV status disclosure to children in Masaka Region, Uganda

Abstract

Background In sub-Saharan Africa (SSA), disclosure of HIV status to children remains low. Few studies have examined how children navigate and come to terms with their HIV status. The aim of this study was to explore experiences of children about disclosure of their HIV status. Methods Between October 2020 and July 2021, 18 purposively selected children aged between 12–17 whose HIV status had been disclosed to them by their caregivers or healthcare providers (HCPs) were recruited for this study. We conducted 18 in-depth interviews (IDIs) to collect data for this study. Data were analyzed using the semantic thematic analysis approach. Results Primary data obtained through IDIs revealed that disclosure of HIV status to children occurred as a one-time event without pre—disclosure preparatory planning or focused post disclosure follow-up counseling irrespective of the discloser. Post disclosure psycho-social experiences elicited mixed responses. Some children experienced insults and belittlement and stigma and discrimination in the family and community for out-of-school children and at school for school-going children. Positive disclosure experiences involved receiving support to improve ART adherence through constantly being reminded to take their medications timely at the workplace, by supervisors, for working children and by teachers, at school for school-going children. Conclusions This research contributes to knowledge about children’ s experiences of being HIV infected and can specifically be used to improve disclosure strategies.