Telling an HIV-infected Child of His Diagnosis

I am following a family where both parents and a child are HIV-infected. The child is now 8-years-old. The parents have not informed the child of his diagnosis. When is the most appropriate time to tell an HIV-infected child of his diagnosis?

The Committee on Pediatric AIDS of the American Academy of Pediatrics recommends disclosure of the diagnosis to all HIV-infected children in an age appropriate manner. Younger children should receive simple explanations about HIV, and as the child ages and becomes more mature, explanations can become more detailed. Experience has demonstrated that children who are fully aware of their condition from an early age often cope better with their illness, and understand that the disease and its treatment are just part of their daily lives.

Parents sometimes are reluctant to disclose a diagnosis of HIV even to older children. Reasons for this reluctance include fear of disclosure of the diagnosis by the child to others in the community, concern that the child will become depressed or give up hope when made aware of the diagnosis, and feelings of guilt over the way in which the child acquired the infection. It is important to discuss issues surrounding disclosure of the diagnosis with the parents in a non-judgmental way, acknowledging that they are uniquely suited to understand the implications of disclosure for their child. If the parents decide that they are not ready for disclosure of the diagnosis to the child, the health professionals should revisit the topic again in three or six months. It is important that the health care team convey a consistent message regarding the importance of disclosure, as well as their support for the parents and family in working through this difficult decision.

Parents sometimes request assistance from the health professionals in disclosing the diagnosis of HIV to their child. Other resources that can be shared with the family and child include the following books:

Takser, M. (1988) Jimmy and the eggs virus. (Available from the National Pediatric and Family HIV Resource Center, www.pedhivaids.org/catalog/books.html).

Tasker, M. (1992) How can I tell you? Bethesda: Association for the Care of Children's Health.

The Teresa Group. (1999) How do I tell you? A disclosure booklet about HIV/AIDS and the family. Toronto: The Theresa Group Child and Family Aid.

BIPAI has a free video entitled Kids to Kids: Medication Dedication that also may be useful in disclosure.