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

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