Patient-Centered Disclosure Intervention for HIV-Infected Children

  • Vreeman, Rachel (PI)

Project: Research project

Project Details


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.
Effective start/end date8/9/125/31/16


  • National Institutes of Health: $499,134.00
  • National Institutes of Health: $454,942.00
  • National Institutes of Health: $283,914.00
  • National Institutes of Health: $445,813.00
  • National Institutes of Health: $755,908.00


  • Medicine(all)


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