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American Academy of Pediatrics Statement On Disclosure of Illness Status to Children and Adolescents with HIV Infection


Many children with human immunodeficiency virus (HIV) infection and acquired immunodeficiency syndrome are surviving to middle childhood and adolescence. Studies suggest that children who know their HIV status have higher self-esteem than children who are unaware of their status. Parents who have disclosed the status to their children experience less depression than those who do not. The following statement by the committee on Pediatric AIDS of the American Academy of Pediatrics provides recommendations for disclosure of HIV infection status to children and adolescents (Pediatrics, vol. 103, no. 1, January 1999, pp. 164-166).

1. Parents and other guardians of an HIV-infected child should be counseled by a knowledgeable health care professional about disclosure to the child of their infection status. This counseling may need to be repeated throughout the course of the child?s illness.

2. Disclosure of the diagnosis to an HIV-infected child should be individualized to include the child?s cognitive ability, developmental stage, clinical status, and social circumstances.

3. In general, younger children, if symptomatic with illness, are most interested in learning what will happen to them in the more immediate future. They do not need to be informed of their diagnosis, but the illness should be discussed with them. If children are informed of their diagnosis, considerable effort should be directed toward eliciting and addressing their fears and misperceptions.

4. The American Academy of Pediatrics strongly encourages disclosure of HIV infection status to school-age children. The process for disclosure should be discussed and planned with the parents any may require a number of visits to assess the child?s knowledge and coping capacity. Older children have a better capacity to understand the nature and consequences of their illness. Considerable effort will need to be directed to facilitate coping with the illness. Symptomatic children, particularly those requiring hospitalization, should be informed of their HIV status. The likelihood of children inadvertently learning about their status in a hospital setting is high. Disclosure should optimally be conducted in a controlled situation with parent(s) and knowledgeable professionals.

5. Adolescents should know their HIV status. They should be fully informed to appreciate consequences for many aspects of their health, including sexual behavior.

6. Adolescents also should be informed of their HIV status to make appropriate decisions about treatment and participation in clinical treatment trials. Physicians should also encourage adolescents to involve their parents in their care.

Committee on Pediatric AIDS, 1996-1997

Catherine Wilfret, MD,
Chairperson

Donna T. Beck, MD

Alan R. Fleischman, MD

Lynne M. Mofenson, MD

Robert H. Pantell, MD

S. Kenneth Schonberg, MD

Gwendolyn B. Scott, MD

Martin W. Sklaire, MD

Patricia N. Whitley-Williams, MD

Liaison Representative

Martha F. Rogers, MD

Centers for Disease Control and Prevention




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