At the end of 2009, there were an estimated 2.1 million children under the age of 15 years living with HIV, with almost 90% residing in sub-Saharan Africa (SSA). With increased availability of antiretroviral therapy (ART) and improved care, increasing numbers of perinatally infected children are surviving into adolescence. There are an estimated 150,000 HIV-infected children in Uganda. While HIV care and treatment programs for children are expanding, a growing challenge facing health providers and caregivers is 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. In Uganda, despite the rapid expansion of HIV services for children, very few health providers receive formal training in how to support disclosure of an HIV diagnosis to an infected child. As HIV care and treatment programs for children are scaled up to meet the demand of a growing population of HIV-infected children in SSA, there is an urgent need for effective, cost-effective, culturally appropriate, and scalable disclosure interventions that improve caregivers ability to communicate with their child about chronic illness and HIV, and promote sustained positive mental health, behavioral and clinical outcomes of HIV-infected children who learn their HIV status. We propose a 4-year project to test the effectiveness of a cognitive-behavioral intervention that we have designed to support developmentally appropriate disclosure to HIV-infected children by their caregiver. The intervention is informed by social cognitive theory and the information-motivation-behavior model, and would adapt components of a multi- faceted program for caregivers of HIV-infected children, developed by members of our team with funding support from the US President's Emergency Plan for AIDS Relief (PEPFAR).
Our specific aims are:
AIM 1 : To determine the effectiveness of a cognitive-behavior intervention for increasing disclosure of children's HIV diagnosis by caregivers to their HIV-infected children age 7-12 years old in Uganda. We will evaluate the intervention using a stepped wedge quasi-experiment implemented at four Kampala area HIV clinics, with a total of 400 caregiver-child dyads, and followed for 24 months. We hypothesize that the enhanced intervention will lead to increased disclosure rates. We will compare disclosure among caregiver- child dyads enrolled in the intervention and dyads enrolled in standard care guided by Uganda National guidelines for HIV Care and Treatment.
AIM 2 : To determine the effect of disclosure on immediate and longer- term caregiver and child mental health, and child behavioral and clinical outcomes, and whether the intervention modifies these effects. We hypothesize that the intervention will attenuate potential adverse effects of disclosure, including depression, anxiety, and behavioral problems.
AIM 3 : To assess the incremental cost, and cost-effectiveness of the intervention. The findings of this study will inform Ugandan and other countries national policies on pediatric HIV care and treatment.
With increased availability of antiretroviral therapy (ART) and improved care, increasing numbers of perinatally infected children are surviving into adolescence; a growing challenge facing health providers and caregivers is disclosure of HIV serostatus to infected children. This project will evaluate the effectiveness and costs of a cognitive-behavioral intervention to support developmentally appropriate disclosure to HIV-infected children in Uganda. The project has the potential to inform the development of policy and guidelines for pediatric HIV disclosure in clinical settings in Africa.