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October 1997

Patterns of Disclosure and Perceptions of the Human Immunodeficiency Virus in Infected Elementary School—age Children

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.

Arch Pediatr Adolesc Med. 1997;151(10):978-985. doi:10.1001/archpedi.1997.02170470012002

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