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Patterns of disclosure and perceptions of the human immunodeficiency virus in infected elementary school-age children

I Funck-Brentano1, D Costagliola, N Seibel

  • 1Unité d'Immuno-Hématologie, Fédération de Pédiatrie, Hôpital Necker-Enfants Malades, Paris, France.

Archives of Pediatrics & Adolescent Medicine
|October 29, 1997
PubMed

Insights

Most elementary school-age children with human immunodeficiency virus (HIV) experienced stress related to disclosure patterns of their HIV status. Disclosure varied, with many parents using secrecy or deception, impacting children

Area of Science:

  • Pediatric Infectious Diseases
  • Child Psychology
  • Medical Ethics

Background:

  • Understanding how children with human immunodeficiency virus (HIV) perceive and experience disclosure of their health status is crucial for their psychosocial well-being.
  • Existing research often focuses on adult disclosure, with limited data on school-aged children's understanding and experiences with HIV status disclosure.

Purpose of the Study:

  • To investigate the diverse patterns of HIV status disclosure among elementary school-aged children.
  • To explore children's and caregivers' perceptions regarding HIV status disclosure.
  • To identify the impact of disclosure strategies on children's experiences with HIV.

Main Methods:

  • A qualitative survey design was employed at a university hospital center.
  • Semistructured interviews were conducted with 35 HIV-infected children (aged 5-10 years) and their parents/caregivers.
  • Analysis included children's drawings to supplement interview data.

Main Results:

  • Partial disclosure occurred in 40% of children; full disclosure of acquired immunodeficiency syndrome (AIDS) diagnosis was given to 17%.
  • Secrecy (nondisclosure or deception) was employed by 43% of caregivers.
  • A significant number of children (31%) perceived their health status differently from their clinical status, with many unable to explain illness causality.

Conclusions:

  • HIV-infected elementary school-age children encounter varied disclosure patterns regarding their condition.
  • Regardless of disclosure method, 74% of children reported stressful experiences related to their HIV infection.
  • Findings highlight the need for tailored disclosure approaches considering children's developmental stages and psychological needs.
Abstract

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