Patterns of disclosure and perceptions of the human immunodeficiency virus in infected elementary school-age children
I. Funck-Brentano, D. Costagliola, N. Seibel, E. Straub, M. Tardieu and S. Blanche
Unite d'Immuno-Hematologie, Federation de Pediatrie, Hopital Necker-Enfants Malades, Paris, France.
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.
