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Background: HIV infected children survive to adolescence because of anti retroviral therapy, however, only a small proportion know their diagnosis.
Disclosure is critical to long-term disease management, yet little is known about if, how, and when disclosure takes place and the barriers associated with it, and its impact on children in resourcelimited settings.
Objective: This study set out to determine the process of and barriers to HIV disclosure in children as well as the immediate impact of this on children and their caregivers.
Methods: A cross-sectional study was done June-July 2016 using a structured questionnaire, convenience sampling and quantitative methods at the infectious disease clinics of National Hospital Abuja. A sample of 164 caregivers of HIV positive children aged 5 to 16 years receiving antiretroviral therapy for at least one year were enrolled. Results: Prevalence of full disclosure was 24.5%, partial 22.7% with overall prevalence of 47.2%. Main barrier to disclosure was child’s age and fear of informing others. The impact of disclosure on caregivers was relief in 45.5% but emotional and difficult for others. Immediate reactions by children were sadness; tearfulness and worry in 28.6%, some showed no reaction while others even expressed relief. On a longer term, disclosure had several effects. Main predictors of disclosure on regression were the child’s age and caregiver’s opinion on disclosure.
Conclusion: The prevalence of full disclosure is low and several barriers affect disclosure. Caregiver’s and HCWs need empowerment and support with culturally appropriate skills and platforms to deal with the barriers, process and impact of disclosure.