Perceptions of children with HIV infection when not told for so long: Implications for diagnosis disclosure

Introduction: The perceptions of school-aged children with HIV infection about their illness were evaluated in light of parental/guardian communication about the child's diagnosis to clarify guidelines for disclosure. Method: An innovative, qualitative research design using methods of grounded theory and projective drawings involved 12 children and 13 parents/guardians from a West Coast Pediatric AIDS Clinical Trial treatment center. Results: A specific process of interaction between parents/guardians and children, when not told for so long, emerged as the central phenomenon of the study. Parents/guardians kept the children's HIV infection secret for 2 to 8 years after diagnosis. Regardless of disclosure status, the children's drawings and conversations suggested severe emotional distress, disturbed self-image, and social isolation. Parents and guardians were unaware of their children's concerns. Discussion: Although other circumstances of the children's lives contributed to their poor psychosocial adjustment, the long interval of silence about the illness also played a part in their poor adjustment. Parents/guardians did not recognize when their children needed more supportive information. Pediatric clinicians should therefore continually assess children's psychosocial adjustment to guide families through the disclosure process. The use of projective drawing techniques can facilitate this process. J Pediatr Health Care. (2000). 14, 235–243.