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Disclosure of an HIV Diagnosis to Children: History, Current Research, and Future Directions

Wiener, Lori PhD*; Mellins, Claude Ann PhD; Marhefka, Stephanie PhD; Battles, Haven B. PhD*

Journal of Developmental & Behavioral Pediatrics: April 2007 - Volume 28 - Issue 2 - p 155-166
doi: 10.1097/01.DBP.0000267570.87564.cd
Review Article

Disclosing the diagnosis of human immunodeficiency virus (HIV) or AIDS to a child is a controversial and emotionally charged issue among both the health care communities and parents and caregivers of these children. This paper provides a systematic review of research on disclosure of pediatric HIV infection. It begins with a brief discussion of disclosure drawing from research on pediatric cancer. Next, we review the available research including patterns of disclosure, factors associated with disclosure and nondisclosure, and the effect of disclosure on psychological health and adherence. A review of published intervention studies is also included. While no consensus on when the diagnosis of HIV should be disclosed to a child or the psychological outcomes associated with disclosure was found, clinical consensus on several issues related to working with families was identified. We apply this literature to clinical practice and suggest avenues and directions for future research.

From *Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, and †HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, New York.

Address for reprints: Lori Wiener, Ph.D., 9000 Rockville Pike, 10/SE Pediatric Clinic Room 6466, Bethesda, MD, 20892; e-mail: wienerl@mail.nih.gov.

© 2007 Lippincott Williams & Wilkins, Inc.