Lived experiences and coping mechanisms among children and adolescents living with HIV after HIV disclosure in Eastern Uganda

PURPOSE: To understand the experiences and coping mechanisms of children and adolescents living with HIV (CALH) after HIV disclosure. METHODS: We conducted a qualitative study among CALH after HIV disclosure receiving care from two referral hospitals in eastern Uganda. In-depth interviews were conducted using an interview guide during routine outpatient visits to HIV clinics until data saturation was achieved. All interviews were audiotaped, and the collected data were analyzed using an inductive thematic approach. RESULTS: We conducted 23 interviews with CALH aged 11-17 years. Participants' experiences of disclosure were categorized into two major themes: (1) negative experiences, including HIV-related stigma, loss of social support and trust, and emotional and behavioral challenges, and (2) positive experiences, including improved self-efficacy and adherence. Coping mechanisms after disclosure were categorized into two themes (1) healthy (adherence to treatment, distraction, guidance and counseling, social support, and cognitive restructuring) and (2) non-healthy (alcohol and other substance use) coping mechanisms. CONCLUSION: The above experiences and coping mechanisms highlight the need to develop interventions that promote planned early disclosure of HIV status to children, supported by trained healthcare workers with rigorous counseling for better physical and mental health outcomes.