Investigation of Pediatric HIV Disclosure in Kampala, Uganda


Location(s): Uganda

Parent Project: UCSF-Gladstone Center for AIDS Research (CFAR)


There are more than 3 million children <15 years estimated to be living with HIV, with almost 90% residing in sub-Saharan Africa (SSA). This presents a growing challenge to health providers and caregivers concerning the disclosure of HIV serostatus to infected children. Studies conducted in SSA have indicated that only 2% to 37.8% of HIV-infected children <15 years know their HIV status. Despite formal recommendations for disclosure, there are no tested models for supporting caregivers and HIV-infected children in SSA through the process of disclosure. There is an urgent need for effective, culturally appropriate, and scalable disclosure interventions that:

  1. improve caregivers' ability to communicate with their child about chronic illness and HIV, and
  2. promote sustained, positive mental health, behavioral and clinical outcomes of HIV-infected children who have learned their HIV status.

We are developing a cognitive-behavioral intervention for implementation in HIV care and treatment settings in Uganda to support developmentally-appropriate disclosure to HIV-infected children by their caregiver. In preparation for a planned NIH R01 proposal to test the effectiveness and cost-effectiveness of the intervention, preliminary investigation is needed of the prevalence of disclosure of children's HIV diagnosis, and of caregiver perceived barriers and prior experiences with disclosure.

  • Aim 1: investigating the prevalence of, barriers to, and prior experience with disclosure of children's HIV diagnosis by children's caregivers. We will conduct semi-structured interviews with 120 caregivers of HIV-infected children age 7 to 12 years old who attend MUJHU for HIV care and treatment.
  • Aim 2: to inform the design of and assess the acceptability of a multi-session, clinic-based, counselor-facilitated intervention to support disclosure to HIV-infected children by their caregiver. We will conduct focus group discussions with MUJHU counselors (N=10) and a purposive sample of 15 caregivers of HIV-infected children age 7 to 12 years old.