Balancing Disclosure of Diagnosis and Assent for Research in Children With HIV

Truly meaningful assent requires that children's conditions be appropriately disclosed to them. However, disclosure of diagnosis to children with HIV is a complex issue that, when poorly managed, can cause harm to the child and family. Here, Barfield and Kane examine whether a child who has reached the age of assent can participate pediatric HIV research without knowing his or her diagnosis of HIV or AIDS. They also explore the meaning of "disclosure of diagnosis" in the context of pediatric HIV. Also, they discuss the right response of a clinician or researcher when a parent of a child who has reached the age of assent will not agree to a developmentally appropriate process of disclosure. Finally, they offer a practical a stepwise disclosure method.