The project aims to provide information on a structured disclosure intervention that can be integrated into usual care in Ghana and other resource-limited settings to improve the welfare of HIV-infected children and their caregivers. This area of investigation is profoundly understudied and of high importance to millions of children and their families in sub-Saharan Africa. While widely recognized as vital to better health outcomes, especially in the era of better access to HIV treatment, many children are not informed of their HIV diagnosis. A variety of sociocultural contextual barriers and deficient skill drive the persistent reluctance of caregivers and health care providers to inform children of the diagnosis. Our preliminary work shows that several key factors can be modified and the process of disclosure promoted with an intervention approach that is grounded in a traditional Ghanaian concept, SANKOFA, and behavioral and bioecological systems theory. The patient-centered intervention approach uses an Adherence and Disclosure specialist model where a designated specialist familiar with the socio-cultural norms of the community is well trained to target modifiable information, motivation and behavioral skills of caregivers to facilitate their engagement in the process of disclosure (i.e., pre-disclosure, disclosure, and post-disclosure phases) in a manner suitable to the needs of the child. The primary aims are: (1) To evaluate the effect of a structured, culturally-relevant disclosure intervention to caregivers delivered by specialist as an integral component of routine HIV healthcare on the rate of caregiver disclosure of pediatric HIV at 1 year follow-up compared to treatment as usual, control condition, in a randomized trial and (2) To identify baseline characteristics (e.g., caregiver knowledge & motivation, child's age) predictive of caregiver disclosure of pediatric HIV independent of and in the presence of the structured disclosure intervention at 1 year follow-up. Secondary aims are: (3) To assess whether the effect of HIV pediatric disclosure on medication adherence and health outcomes of children (virologic, immunologic, psychosocial, and behavioral) and the caregiver (psychosocial) varies by exposure vs. non-exposure to the structured disclosure intervention and (4) To assess the fidelity and acceptability of the disclosure intervention over time among the clinic personnel designated disclosure specialist, caregiver, and children to whom HIV status has been disclosed. Provider, caregiver and child participants will be enrolled from tertiary HIV clinics in Ghana with longitudinal outcomes evaluated every 3 months post-randomization to 24 months post disclosure.

Public Health Relevance

A culturally-relevant, theoretically and empirically sound, patient-centered, standardized disclosure intervention that can be integrated into routine clinical pediatric HIV care has potential to prevent transmission and improve the welfare of children and their caregivers in Ghana and other resource-limited settings. Results from this project will also further an understanding of factors and processes driving pediatric HIV disclosure.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel (ZHD1-DSR-M (52)R)
Program Officer
Lee, Sonia S
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Yale University
Schools of Medicine
New Haven
United States
Zip Code
Ofori-Atta, Angela; Reynolds, Nancy R; Antwi, Sampson et al. (2018) Prevalence and correlates of depression among caregivers of children living with HIV in Ghana: findings from the Sankofa pediatric disclosure study. AIDS Care :1-10
Paintsil, Elijah; Martin, Ryan; Goldenthal, Ariel et al. (2016) Frequent Episodes of Detectable Viremia in HIV Treatment-Experienced Children is Associated with a Decline in CD4+ T-cells Over Time. J AIDS Clin Res 7:
Hansen, Caitlin; Paintsil, Elijah (2016) Infectious Diseases of Poverty in Children: A Tale of Two Worlds. Pediatr Clin North Am 63:37-66
Kukoyi, Omobolawa; Renner, Lorna; Powell, Jonathan et al. (2016) Viral load monitoring and antiretroviral treatment outcomes in a pediatric HIV cohort in Ghana. BMC Infect Dis 16:58
VanDeusen, Adam; Paintsil, Elijah; Agyarko-Poku, Thomas et al. (2015) Cost effectiveness of option B plus for prevention of mother-to-child transmission of HIV in resource-limited countries: evidence from Kumasi, Ghana. BMC Infect Dis 15:130
Paintsil, Elijah; Renner, Lorna; Antwi, Sampson et al. (2015) HIV knowledge, stigma, and illness beliefs among pediatric caregivers in Ghana who have not disclosed their child's HIV status. AIDS Care 27 Suppl 1:18-27
Reynolds, Nancy R; Ofori-Atta, Angela; Lartey, Margaret et al. (2015) SANKOFA: a multisite collaboration on paediatric HIV disclosure in Ghana. AIDS 29 Suppl 1:S35-45
Catlin, Ann Christine; Fernando, Sumudinie; Gamage, Ruwan et al. (2015) Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality. AIDS Care 27 Suppl 1:99-107
Langs-Barlow, Allison; Paintsil, Elijah (2014) Impact of human immunodeficiency virus type-1 sequence diversity on antiretroviral therapy outcomes. Viruses 6:3855-72