In the resource-limited settings where most HIV-infected children live, neither the most effective strategies to inform children of their HIV status, nor the impact of disclosure is well understood. This team's long-term goal is to provide evidence to improve the chronic disease management of HIV-infected children in resource-limited settings. The purpose of this study is to assess the effect of a patient-centered intervention guiding disclosure to HIV-infected Kenyan children, using a cluster randomized trial comparing the intervention to routine care. The primary endpoint will be probability of disclosure among children, with secondary endpoints of adherence, clinical outcomes, psychological distress and social outcomes. This work will be done within a long-standing US-Kenya partnership, the Academic Model Providing Access to Healthcare (AMPATH), which currently cares for almost 120,000 adult and pediatric HIV-infected patients in 25 clinics in Kenya. We will utilize the excellent infrastructure of this academic partnership to provide the first comprehensive assessment of the physical, psychological, and social impact of disclosure for HIV-infected children in East Africa. We will evaluate the impact of an intensive disclosure intervention by pursuing these specific aims:
Aim 1 : Expand and modify an existing pediatric HIV disclosure intervention used in Kenya to include patient-centered components;
Aim 2 : Perform a cluster randomized trial to compare the impact of clinic implementation of the culturally adapted, pediatric disclosure intervention on the prevalence of disclosure and on the medical, psychological, and social outcomes for HIV-infected Kenyan children ages 10-15 years compared to children exposed to standard clinical care. The usual care control arm will have disclosure training for all clinicians, disclosure chart materials, and an existing protocol to implement disclosure for patients over 10 years. The disclosure intervention will consist of patient-centered materials to guide disclosure, including videotaped narratives; disclosure counselors; post-disclosure child support groups; and the usual care resources. Phase One, which will last 6 months, focuses on cultural adaptation of the intervention materials through intensive patient participation, including focus groups and cognitive interviewing; selecting narrative components; and training dedicated disclosure counselors. Phase Two consists of a cluster randomized, controlled trial conducted in eight pediatric HIV clinics with comprehensive patient assessments every 6 months for 2 years. We hypothesize that the intervention group will have higher rates of disclosure at a given age, as well as improved ART adherence, fewer depression symptoms and emotional difficulties, and no increases in experienced stigma compared to the control group.
The contribution of this study is expected to be a culturally appropriate, patient-oriented intervention to advance pediatric HIV disclosure within a resource-limited setting. The proposed research is significant because we must engage in disclosure to children that optimizes the long-term clinical management for HIV-infected children, preventing viral resistance and poor physical, emotional, or social outcomes.
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