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Children's knowledge of illness and treatment experiences in hemophilia
Insights
Children with hemophilia actively seek knowledge but have gaps in understanding disease origins and treatment purposes. This study explored their comprehension of hemophilia and its management.
Area of Science:
- Pediatric Hematology
- Child Psychology
- Medical Education
Background:
- Hemophilia is a genetic bleeding disorder requiring lifelong management.
- Understanding a child's perspective on their illness is crucial for effective care and education.
- Previous research has not fully detailed school-aged children's comprehension of hemophilia.
Purpose of the Study:
- To describe the understanding of hemophilia and its treatment among children aged 6-13.
- To identify specific knowledge gaps in pediatric hemophilia comprehension.
- To explore children's lived experiences with hemophilia and medical interventions.
Main Methods:
- Grounded theory approach utilized for data collection and analysis.
- Semistructured interviews with 20 children (ages 6-13) with hemophilia.
- Pictorial stimuli used to explore understanding of illness and treatment domains.
Main Results:
- Children actively engaged in learning about hemophilia and treatment.
- Understanding of hemophilia did not follow a predictable developmental trajectory.
- Significant knowledge deficits identified regarding disease inheritance and treatment rationale.
Conclusions:
- School-aged children with hemophilia demonstrate varied levels of understanding.
- Targeted educational interventions are needed to address knowledge gaps in disease origin and treatment purpose.
- Further research should explore age-specific developmental pathways in understanding chronic childhood illnesses.
Abstract:
The purpose of this study was to describe what children with hemophilia understand about their unique illness and treatment experiences. Subjects included 20 children with hemophilia between the ages of 6 years and 13 years who had no evidence of cognitive problems. Following the principles of grounded theory, data about children's experiences of hemophilia and their understanding of these experiences were obtained through a semistructured interview using five pictorial stimuli representing illness and treatment domains. Data analysis was conducted using the constant comparative method. Children's knowledge was described in regard to (a) the nature of hemophilia and its origin, (b) the major illness experience: bleeding, (c) the nature of treatment and its purpose, and (d) the major treatment experience: poking. Findings indicated that although school-aged children with hemophilia were engaged actively in gaining knowledge about their disease and treatment, the overall level of understanding of children aged 6 years to 13 years did not follow a distinct path of development. Major areas of knowledge deficiency included knowledge about how one contracts hemophilia and the purpose of treatment.