A phenomenological account of HIV disclosure experiences of children and adolescents from Northern and Southern Ghana

Abstract

Disclosure of HIV status to infected children, though challenged by caregiver dilemma, remains central in achieving the United Nations Programme on HIV and AIDS (UNAIDS) global goal of 90/90/90. This study explores children’s HIV disclosure experiences across Northern and Southern Ghana. A qualitative interpretative phenomenological design facilitated the recruitment of 30 HIV positive disclosed children and adolescents aged 9-19 years in 12 antiretroviral treatment (ART) centers in Northern and Southern Ghana between January 2017 and June 2018. Data was collected via in-depth interviews. We used phenomenological analysis applying concepts and categories identification, patterns and interconnections searching, mapping, theme building and constant comparative technique to draw conclusions. Disclosure of HIV status to children occurred with little or no preparation. Caregivers intentionally or out of dilemma often prolonged or postponed disclosure to when children aged older. Illness severity and disease progression principally defined the need for disclosure. Children preference for early status disclosure averaged at age 10 was demonstrated despite the initial disclosure experience of shock and disappointment. There was improved medication adherence despite the challenge of limited knowledge about HIV transmission, financial difficulty and food insecurity. Context and culturally adapted pre- and post- disclosure guideline laced with social protection package is needed to support HIV positive children.