Disclosure of HIV diagnosis to children: When, where, why, and how

Abstract

Despite recent recommendations by the American Academy of Pediatrics that strongly encourage disclosure of human immunodeficiency virus (HIV) infection to school-age children, health care providers vary widely in their actual disclosure practices. Concrete guidelines for accomplishing disclosure are not currently available. Nondisclosure can result in a variety of problems, including anxiety, depression, phobias, and exclusion from peer support groups and medical camps. This article reviews the available literature on disclosure of HIV infection to children and describes the disclosure process used in a large, urban pediatric HIV clinic.

Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa

“…8 Here, similar to other studies, 12,32 children had a sense of social isolation and emotional distress, noted in messages to not touch other people's belongings and not share common household items, and unexpressed questions and concerns resulting perhaps from messages that worrying will make them sicker, but also possibly reflecting cultural norms around parent-child communication.…”

“…Reasons for disclosure most frequently reported in the United States, Canada, and Europe were child's age and cognitive development. 4,7,8,13 Similar factors were reported by studies in developing countries.…”

“…One perspective of the process is from caregivers=parents providing information and the steps they undertake. [7][8][9][10] A second perspective is from the child receiving the information. [11][12][13][14][15][16][17] Prevalence of disclosure to infected children varies.…”

Pediatric HIV Disclosure: A Process-Oriented Framework

“…Therefore, health care providers and caregivers not only need to be proactive in creating an open and accepting environment for the child during the initial stage of disclosure, but they also need to take this initiative early in the child's development. Published models for disclosure and the one we describe herein prepare and guide caregivers and health care providers through the disclosure process (Blasini et al, 2004;Gerson et al, 2001). However, it is important that the disclosure process proceed in a developmentally appropriate progression from childhood, through adolescence, and into adulthood, thus reducing emotional distress related to a chronic life-threatening illness (Adadia- Barrero & LaRusso, 2006;Lesch et al, 2007).…”

Informing Adolescents of Perinatally Contracted HIV

“…Further, most youth in those studies had come to terms with their diagnosis by 6 months post-disclosure. Importantly, parents who disclosed the HIV status to their children experienced less depression and considered disclosure as having an overall positive effect on themselves and their families [1][2][3]. Reluctance to disclose the HIV status to children and youth is often based on the caregiver's concern for possible exposure to stigma and discrimination toward the whole family once the adolescent shares the diagnosis with partners, peers, or the public [4][5][6].…”