As increasing numbers of children with perinatally acquired human immunodeficiency virus type 1 (HIV) infection are surviving to ages at which they are developmentally ready to learn their diagnosis, the management of disclosure becomes an increasingly crucial component of medical, psychological, and social care [1, 2]. Even though much more is now understood about the transmission of HIV than when AIDS was first reported, most families still keep the diagnosis a closely guarded secret.

The decision to disclose an HIV diagnosis to a child is difficult and emotion-laden. Most parents do eventually disclose the diagnosis to their child, though some families or cultures are not as open about discussing personal subjects with their children as professionals might expect [3, 4].

Parents' perspectives: reasons cited for the decision not to disclose

A child diagnosed with HIV identifies an entire family at risk of infection [5]. Following a child's positive test result, the whole family is usually tested. In just a matter of days, the family's hopes and expectations for their future together are radically altered. Parents often keep the diagnosis a secret as they worry about a negative reaction by family. They may fear the psychological effect that disclosure might have on non-infected siblings and that (if disclosed to), the infected child may not be able to keep the information confidential [6–8].