Disclosing HIV status to children has the potential to support their psychological health and improve their adherence to antiretroviral medications. However, disclosing an HIV positive status to children is a challenge worldwide. Both caregivers and health care providers often feel unprepared to engage in this difficult conversation. Although there is some literature describing the challenges of disclosure to children, and recommending the development and evaluation of resources to support this process, there are no detailed descriptions or evaluations of successful interventions in sub-Saharan Africa. In Namibia, where more than 9,000 children are on antiretroviral treatment for HIV, the Ministry of Health and Social Services and the International Training and Education Center for Health (I-TECH) have collaborated to develop and implement an innovative, structured disclosure intervention for caregivers and health care workers. The program includes a culturally relevant, child-friendly book, which uses colorful cartoon drawings to assist health care workers in a staged procedure for disclosing HIV status;a tool to help health care workers assess caregiver and child readiness for full HIV disclosure and to systematically work through barriers;a tool to monitor children's understanding of their disease over time;and a training curriculum to prepare teams of health care workers to use the book and tools at their sites. We hypothesize that this multipronged intervention will support caregivers and health care workers and facilitate a healthy disclosure process, thus improving children's understanding and management of their HIV disease. I-TECH proposes to evaluate this intervention through the following four aims: (1) Assess the implementation fidelity of the child disclosure intervention at the nine highest pediatric patient volume sites in Namibia;(2) compare patient outcomes between children who are in the disclosure program and those who are not in the program;(3) use interviews and surveys to determine the benefits of the disclosure program to health care workers in increasing their knowledge and confidence (self-efficacy) with disclosure;and (4) use interviews to determine the benefits of the disclosure program to caregivers in improving their ability to care for and support children living with HIV (including adherence to medications). If shown to be successful, the fact that the intervention relies on relatively low-cost and locally produced tools and that it can be used with minimal training by all health care workers, could make it especially attractive for replication elsewhere in sub-Saharan Africa. Thus, the potential impact on pediatric patient health, caregivers, and health care workers is great.

Public Health Relevance

Although there is much evidence of the need for child HIV disclosure interventions, there is little evidence base for successful programs. Findings from the proposed evaluation study in Namibia, of a locally developed, culturally appropriate, and sustainable child disclosure intervention, could have broad impact in Namibia and elsewhere in sub-Saharan Africa in terms of health care worker and caregiver self-efficacy for disclosure, as well as pediatric clinical outcomes

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Exploratory/Developmental Grants (R21)
Project #
5R21HD074071-02
Application #
8534229
Study Section
Special Emphasis Panel (ZHD1-DSR-M (52))
Program Officer
Siberry, George K
Project Start
2012-08-20
Project End
2014-06-30
Budget Start
2013-07-01
Budget End
2014-06-30
Support Year
2
Fiscal Year
2013
Total Cost
$80,171
Indirect Cost
$16,113
Name
University of Washington
Department
Public Health & Prev Medicine
Type
Schools of Medicine
DUNS #
605799469
City
Seattle
State
WA
Country
United States
Zip Code
98195