This Article Full Text (PDF) References Alert me when this article is cited Alert me if a correction is posted Citation Map Services Email this article to a friend Similar articles in this journal Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Citing Articles via Scopus Google Scholar Articles by Lester, P. Articles by Wara, D. Search for Related Content PubMed Articles by Lester, P. Articles by Wara, D. Social Bookmarking                   What's this?

Diagnostic Disclosure to HIV-Infected Children: How Parents Decide when and what to Tell

University of California, Los Angeles, plester{at}mednet.ucla.edu

Margaret Chesney

University of California, Los Angeles

Molly Cooke

University of California, Los Angeles

Patrick Whalley

University of California, Los Angeles

Berenice Perez

University of California, Los Angeles

Ann Petru

University of California, Los Angeles

Alejandro Dorenbaum

University of California, Los Angeles

Diane Wara

University of California, Los Angeles

The objective of this study was to assess parental decision-making about illness disclosure to human immunodeficiency virus (HIV)-infected children. This is a cross-sectional study of 51 children with HIV infection based on parent interviews, child cognitive testing, clinical assessments and medical records. Only 43% of children had been told their HIV diagnosis. Qualitative analysis of parental decision- making about illness disclosure varied by child developmental level. Factors influencing parental decision to disclose the child’s HIV status including parental communication style, parental illness, child’s rights, treatment adherence, child questions and provider pressures, whereas concerns about HIV stigma and potential emotional distress were most frequently identified as reasons for non- disclosure. Central decision-making factors for parental HIV disclosure and reported outcomes of disclosure are described. Pediatric HIV disclosure represents a complex task for parents caring for the HIV-infected child, one in which the child’s development and the family’s community should be considered in the setting of a potentially stigmatizing infectious illness.

Key Words: child development • illness disclosure • parental decision-making • pediatric aids • stigma

Clinical Child Psychology and Psychiatry, Vol. 7, No. 1, 85-99 (2002)
DOI: 10.1177/1359104502007001007


CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this?

This article has been cited by other articles:

				A. M. Butler, P. L. Williams, L. C. Howland, D. Storm, N. Hutton, G. R. Seage III, and for the Pediatric AIDS Clinical Trials Group 219C Impact of Disclosure of HIV Infection on Health-Related Quality of Life Among Children and Adolescents With HIV Infection Pediatrics, March 1, 2009; 123(3): 935 - 943. [Abstract] [Full Text] [PDF]

				W. Pequegnat and The Nimh Consortium on Family and HIV/AIDS Researc Research Issues with Children Infected and Affected with HIV and their Families Clinical Child Psychology and Psychiatry, January 1, 2002; 7(1): 7 - 15. [PDF]