Disclosure of HIV diagnosis to infected children and youth is a complex process that presents a challenge to both families and health care providers. Stigmitization of HIV infection and concerns regarding children?s ability to cope with knowledge of life-threatening often result in families working hard to keep diagnosis a secret. Families may fear taunting or being ostracized. In other case, parents or guardians fear their child will "give up" and their health will decline once the child learns of the HIV diagnosis. Further, because of the multigenerational nature of pediatric HIV, disclosure to children often leads to difficult questions about transmission, parents' sexuality and/or drug use history as well as questions about death--their own as well as their parent's.

Secrecy becomes increasingly more difficult as children live longer, experience more medical procedures, interventions, and hospitalizations, and grow into adolescents exploring sexuality in the normal course of development. This increased longevity was part of the impetus for The American Academy of Pediatrics Committee on Pediatric AIDS recommendations regarding HIV disclosure to children and adolescents that were published in The January 1999 issue of Pediatrics. The Committee reviews research from pediatric oncology and pediatric HIV/AIDS which revealed some important and relevant findings. This included that children who are informed about their diagnosis have better coping and higher self-esteem and parents who disclose HIV status to their children express less depression than parents who do not disclose.

The Committee highlights and reviews many of the obstacles to full disclosure of HIV diagnosis to children. Among the obstacles discussed are fears regarding a decrease in the child?s will to live, fears regarding retaliation or discrimination based on stigma, parental guilt about perinatal transmission of HIV infection, child?s difficulty keeping a secret, and parent?s denial and/or difficulty confronting their own illness. The Committee urges practitioners against promising parents they will remain in total secrecy with the child regarding their HIV diagnosis. They suggest that practitioners make it clear to parents that they cannot withhold information from an older child who inquires about diagnosis. The Committee supports full disclosure to all adolescents. However, the Committee does note imminent death and dying issues take precedence over issues regarding disclosure.

The Committee's recommendations for disclosure of HIV status to children and adolescents include ongoing counseling about disclosure for parents; individualizing disclosure based on the child?s age, maturity, clinical and social circumstances; and facilitating the child?s or adolescent?s coping with their illness. They stress the importance of ongoing counseling for parents to facilitate their understanding of the importance of HIV disclosure to children and youth. Of course in the most ideal circumstances, disclosure of HIV diagnosis to a child or adolescent takes place in a supportive environment with collaboration and cooperation among parents and providers.

Psychologists can be among the team of professionals who support the process of HIV disclosure. Most children and youth receive HIV care in a setting where they have a health care team that often includes a physician, nurse or nurse practitioner, & social worker. Some clinics have psychologists on staff while others do not. Psychologists can function as integral members of the health care team offering their skills and expertise to address the complex emotional, developmental, and socio-environmental issues associated with HIV disclosure of diagnosis. Along with other health care professionals, psychologists can be an important source of support and guidance for families. Given changes in development and cognitive understanding families need help finding the right words to say to their 4 year old or 8 year old or 13 year old child. They need support in timing disclosure and making other crucial decisions throughout the process of disclosure.

There are a number of resources for professionals and families to facilitate the process of disclosure including videos, books, and journal articles. (http://www.pedhivaids.org).