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Perceptions of children with HIV infection when not told for so long: implications for diagnosis disclosure
1Hahn School of Nursing and Health Science, University of San Diego, 5998 Alcala Park, San Diego, CA 92110-2492, USA.
Insights
Children with HIV experienced distress and isolation when parents delayed disclosure of their diagnosis. Early communication is vital for their well-being and psychosocial adjustment.
Area of Science:
- Pediatric Psychology
- Childhood HIV/AIDS
- Disclosure Studies
Background:
- Evaluating perceptions of school-aged children with HIV regarding their illness.
- Assessing parental/guardian communication practices related to diagnosis disclosure.
- Clarifying guidelines for effective disclosure to children with HIV.
Purpose of the Study:
- To understand children's perceptions of their HIV illness.
- To examine the impact of delayed disclosure on psychosocial adjustment.
- To inform guidelines for parental disclosure of HIV diagnosis to children.
Main Methods:
- Qualitative research design utilizing grounded theory.
- Inclusion of 12 children and 13 parents/guardians from a Pediatric AIDS Clinical Trial center.
- Use of projective drawings and conversations to gather data.
Main Results:
- A central phenomenon of delayed disclosure (2-8 years) emerged.
- Children exhibited severe emotional distress, poor self-image, and social isolation, irrespective of disclosure status.
- Parents/guardians were unaware of their children's distress and needs.
Conclusions:
- Delayed disclosure significantly contributes to poor psychosocial adjustment in children with HIV.
- Parents/guardians often fail to recognize children's needs for supportive information.
- Pediatric clinicians should assess psychosocial adjustment and guide families in the disclosure process, potentially using projective drawing techniques.
Introduction:
The perceptions of school-aged children with HIV infection about their illness were evaluated in light of parental/guardians 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.