The SANKOFA Project: Pediatric HIV Disclosure Intervention

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 skills 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.

Primary Aims Secondary Aims
  • Evaluate the effect of a structured, culturally-relevant disclosure intervention to caregivers delivered by a 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.
  • 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.
  • 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.
  • 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.

Why the name “Sankofa?”

“Sankofa”, derived from the words SAN (return), KO (go), FA (look, seek and take), is a symbol of a mythical bird used by the Akan tribe of Ghana. The symbol is literally translated to mean “go back and retrieve." It symbolizes the quest for knowledge among the Akans with the implication that the quest is based on critical examination, and intelligent and patient investigation. To the Akans, it is this wisdom in learning from the past which ensures a stronger future. The intervention is grounded in the principles of Sankofa and guided by an HIV pediatric disclosure model drawn from our prior research conducted in Ghana and that of others, bioecological systems theory, and core elements of the Information-Motivation-Behavioral Skills (IMB) model of Health Behavior Change and other applications of it.

Significance of the Sankofa Project

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.

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What makes the Sankofa Project different from others?

A novel intervention approach grounded in behavioral theories and challenges the current paradigm of not informing children with HIV (especially those younger than 12-13 years of age) of their diagnosis. Second, it uses an ADherence and Disclosure Specialist (ADDS). Third, the study uses web-accessible database system for the acquisition, storage, and exploration of clinical and analytical data designed to be immune to the perennial data collection (e.g., incomplete and missing data) and management problems with regard to research in the sub-region.

Where is the Sankofa Project happening?

In Ghana at two sites: Korle-Bu Teaching Hospital, Accra and Komfo Anokye Teaching Hospital, Kumasi.

Who are the leaders of the Sankofa Project?

The principal investigators are Elijah Paintsil, MD, of Yale School of Medicine and Nancy Reynolds, PhD, of Yale School of Nursing.

Who is funding the Sankofa Project?

Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health (NICHD/NIH).

The links below are used to collect data, explore data, manage the database, and provide resources for the members of the Sankofa research team. Access is restricted.