Changing methods of disclosure. Literature review of disclosure to children with terminal illnesses, including HIV

Abstract

More than 30 years after the first discovery of the deadly HIV virus, and in the wake of increased knowledge of transmission, treatment and behavioral intervention development, parents are still faced with the difficult task of whether, when and how to inform their child about her or his HIV status. Except for some general ethical considerations, there are no national or international guidelines available for handling HIV status disclosure to a child by parents and health professionals. Most studies on disclosure address the problem of stigma and the barriers to disclosure of HIV-positive status by adults to their sexual partners, caretakers, families and communities, but very few studies focus on disclosure to HIV-positive children. The majority of the studies that address disclosure to children limit themselves to stipulating reasons for barriers to such disclosure instead of the skills and knowledge necessary for effective disclosure to a child. Increasing availability of therapy for HIV across the world presses the issue of disclosure to the child. Even so, disclosure for children who are HIV-positive due to vertical transmission continues to be very difficult. There is a lack of interventions that consider guidelines for healthcare professionals, parents or persons involved with taking care of HIV-positive children. These interventions should be designed in an understanding manner towards the culture where they might be implemented and be as appropriate in the view of integrating different family structures and the child's development.