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 o f 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 be tween 1984 and 1993 were eligible for the study. A total of 35 HIV-inf ected (21 asymptomatic and 14 symptomatic) elementary school-age child ren (aged 5-10 years) were examined between 1990 and 1993. Main Outcom e Measures: Semistructured qualitative interviews were used, 1 with th e children and 1 with their parents or caregivers. In addition, 3 draw ings per child were also analyzed. Results: Partial disclosure was obs erved in 14 (40%) of the children, and full disclosure of the diagnosi s of acquired immunodeficiency syndrome was given to 6 (17%) of the ch ildren. 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 c ondition, medical or other (n = 7). Perceived health status and clinic al status differed for 11 (31%) of the children. Eight children did no t identify any illness causality, and most of the others gave prelogic al or concrete-logical explanations. Few children were aware of their parent's infection or disease. Conclusion: Human immunodeficiency viru s-infected elementary school-age children were exposed to various disc losure patterns regarding their HIV infection or disease, and most chi ldren (26/35 [74%]) reported stressful experiences due to HIV regardle ss of the disclosure patterns.