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AIDS. 2015 Jun;29 Suppl 1:S35-45. doi: 10.1097/QAD.0000000000000725.

SANKOFA: a multisite collaboration on paediatric HIV disclosure in Ghana.

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aYale University School of Nursing, West Haven, Connecticut, USA bDepartment of Psychiatry cDepartment of Medicine dDepartment of Child Health, University of Ghana School of Medicine and Dentistry, Accra eDepartment of Child Health, School of Medical Sciences, Kwame Nkrumah University of Science and Technology and Komfo Anokye Teaching Hospital, Kumasi, Ghana fPurdue University gYale Center for Analytical Sciences hDepartment of Pediatrics iDepartment of Pharmacology & Public Health, Yale University School of Medicine, New Haven, Connecticut, USA.


With the scale-up of effective antiretroviral therapy in resource-limited settings, many HIV-infected children are now able to survive into adulthood. To achieve this potential, children must navigate normative developmental processes and challenges while living with an unusually complex, stigmatizing, potentially fatal chronic illness and meeting the demands of treatment.Yet many of these children, especially preadolescents, do not know they are HIV-infected. Despite compelling evidence supporting the merits of informing children of their HIV status, there has been little emphasis on equipping the child's caregiver with information and skills to promote disclosure, particularly, when the caregiver faces a variety of sociocultural barriers and is reluctant to do so. In this study, we present the background, process and methods for a first of its kind collaboration that is examining the efficacy of an intervention developed to facilitate the engagement of caregivers in the process of disclosure in a manner suitable to the sociocultural context and developmental age and needs of the child in Ghana. We also report preliminary data that supported the design of the intervention approach and currently available domains of the data system. Finally, we discuss challenges and implications for future research.

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