Public disclosure of a child's HIV infection: impact on children and families.
As an increasing number of children infected with HIV live to older ages, the question of disclosure of the diagnosis (to the child and to others) becomes more crucial. Disclosure of a child's HIV diagnosis is a controversial and emotionally laden issue. One reason that families avoid disclosure is their fear of the negative impact on the child and family that the stigma associated with AIDS can bring. At the other end of the spectrum, are those families that choose to publicly disclose an HIV diagnosis. There are a number of reasons that a family may choose to go public with their child's diagnosis, although this has never been systematically assessed. The dearth of literature and research regarding the emotional impact of public life on a child as well as the interest of a number of non-public HIV-infected children to "go public" served as an impetus to conduct a study that directly examined the impact public disclosure has on the HIV-infected child and family. Specifically, findings pertaining to the decision making process, the impact public disclosure has had on the child's family, and the child's sense of self-worth at the time of the study and then again 4 years later are reviewed. Findings and implications for future research as well as interventions and strategies aimed at counseling families considering "going public" and helping to normalize the public child's life are discussed.
Wiener
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LS
Pediatric AIDS Working Group, HIV/AIDS Malignancy Branch, National Cancer Institute, Bethesda, MD, USA. wienerl@exchange.nih.gov
Battles
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HB
Heilman
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N
D000223:Adaptation, Psychological; D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D003376:Counseling / Q000379:methods; D003430:Cross-Sectional Studies; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D015658:HIV Infections / Q000175:diagnosis* / Q000453:epidemiology / Q000523:psychology* / Q000635:transmission; D006801:Humans; D008297:Male; D008402:Mass Media; D009316:National Institutes of Health (U.S.); D011287:Prejudice; D002666:Psychology, Child; D012649:Self Concept; D013240:Stereotyping; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology; D011795:Surveys and Questionnaires; D014342:Truth Disclosure; D014481:United States / Q000453:epidemiology