Disclosure of an HIV diagnosis to children: history, current research, and future directions

• Published in: Journal of developmental and behavioral pediatrics Vol. 28; no. 2; p. 155
• Main Authors: Wiener, Lori, Mellins, Claude Ann, Marhefka, Stephanie, Battles, Haven B
• Format: Journal Article
• Language: English
• Published: United States 01.04.2007
• Subjects: Adaptation, Psychological; Adolescent; Anti-Retroviral Agents - therapeutic use; Child; Family Therapy; HIV Infections - diagnosis; HIV Infections - psychology; HIV Seropositivity - diagnosis; HIV Seropositivity - psychology; Humans; Internal-External Control; Neoplasms - diagnosis; Neoplasms - psychology; Patient Compliance - psychology; Sick Role; Social Support; Truth Disclosure
• ISSN: 0196-206X; 1536-7312
• DOI: 10.1097/01.dbp.0000267570.87564.cd

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.