Among 622 HIV-infected Ugandan children studied as part of the ARROW trial, 110 mothers (18%) had not disclosed the child's HIV status to the father. 30 mothers refused consent for the child to join the ARROW study; in the other 80 cases the children were recruited to the study, but some missed home visits or appointments, and adherence to treatment was sometimes poor. One father denied that his child was infected and threatened violence if the child received care. It is argued that disclosure of a child's HIV status to both main caregivers, maybe using a trusted third party, should be encouraged prior to enrolment into a clinical trial, and that adherence and follow-up may become problematic if only one caregiver know's that child's HIV status and that caregiver dies.
Musiime, V.; Bakeera-Kitaka, S.; Mubokyi, S.; Nahirya-Ntege, P.; Ofumbi-Nsiyona, S.; Bwakura-Dangarembizi, M.F.; Gibb, D.M.; Musoke, P.; Nathoo, K.; Munderi, P.; Kekitiinwa, A.; Crawley, J.; Mugyenyi, P. Confidentiality and non-disclosure can affect enrolment, follow-up and adherence to Antiretroviral Therapy in Ugandan children. Findings from the ARROW (AntiRetroviral Research fOr Watoto) trial. Presented at The XVII International AIDS Conference, Mexico City, Mexico, 3-8 August 2008. (2008)