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Patterns of Disclosure and Perceptions of the Human Immunodeficiency Virus in Infected Elementary School—age Children
Isabelle Funck-Brentano, PsyD;
Dominique Costagliola, PhD;
Nathalie Seibel, PsyD;
Elisabeth Straub, PsyD;
Marc Tardieu, MD;
Stéphane Blanche, MD
Arch Pediatr Adolesc Med. 1997;151(10):978-985.
Abstract
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Objective
To investigate the patterns of disclosure and perceptions of human immunodeficiency virus (HIV) status in a group of HIV-infected elementary school—age children.
Design
A survey.
Setting
A referred care university hospital center.
Patients
All HIV-infected children born before August 31, 1985, and scheduled for ambulatory follow-up between 1984 and 1993 were eligible for the study. A total of 35 HIV-infected (21 asymptomatic and 14 symptomatic) elementary school—age children (aged 5-10 years) were examined between 1990 and 1993.
Main Outcome Measures
Semistructured qualitative interviews were used, 1 with the children and 1 with their parents or caregivers. In addition, 3 drawings per child were also analyzed.
Results
Partial disclosure was observed in 14 (40%) of the children, and full disclosure of the diagnosis of acquired immunodeficiency syndrome was given to 6 (17%) of the children. Secrecy regarding serostatus was the strategy used by 15 (43%) of the parents or caregivers involving either complete nondisclosure (n=8) or deception by means of attributing the symptoms to another condition, medical or other (n=7). Perceived health status and clinical status differed for 11 (31%) of the children. Eight children did not identify any illness causality, and most of the others gave prelogical or concrete-logical explanations. Few children were aware of their parent's infection or disease.
Conclusion
Human immunodeficiency virus—infected elementary school—age children were exposed to various disclosure patterns regarding their HIV infection or disease, and most children (26/35 [74%]) reported stressful experiences due to HIV regardless of the disclosure patterns.
Arch Pediatr Adolesc Med. 1997;151:978-985
Author Affiliations
From the Unité d'Immuno-Hématologie, Fédération de Pédiatrie, Hôpital Necker-Enfants Malades (Drs Funck-Brentano and Blanche); Institut Fédératif Saint-Antoine de Recherche en Santé, Institut National de la Santé et de la Recherche Médicale SC4, Université Pierre et Marie Curie (Dr Costagliola); and Service de Neurologie, Département de Pédiatrie, Hôpital Bicêtre, Le Kremlin-Bicêtre (Drs Seibel, Straub, and Tardieu), Paris, France.
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