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Published on: May 8, 2017
Children's understanding of cystic fibrosis
M G Harbord1, D G Cross, F Botica
1Department of Psychiatry, Adelaide Children's Hospital, South Australia.
Insights
Children with cystic fibrosis show developing knowledge of their illness with age. However, younger children (4-6 years) exhibit more positive attitudes toward therapy and self-management than older age groups.
Area of Science:
- Pediatric Psychology
- Pediatric Pulmonology
Background:
- Cystic Fibrosis (CF) is a genetic disorder affecting multiple organs.
- Understanding of illness and attitudes towards therapy can impact treatment adherence and outcomes in pediatric patients.
Purpose of the Study:
- To investigate the understanding and attitudes towards cystic fibrosis in children across different age groups.
- To compare these perceptions with cognitive development stages.
Main Methods:
- Interviewed 61 children (aged 4-18 years) with cystic fibrosis.
- Compared responses across three age groups (4-6, 7-11, 12-18 years).
- Correlated findings with Piagetian stages of cognitive development.
Main Results:
- Knowledge of cystic fibrosis increased with age.
- Younger children (4-6 years) reported more positive self-perceptions and therapy effects compared to older groups.
- The 7-11 year group showed the least positive outlook on therapy benefits and CF, despite better clinical scores.
Conclusions:
- Cognitive development influences children's understanding of cystic fibrosis.
- Attitudes towards CF and its therapy are complex and vary significantly by age.
- Interventions may need to be tailored to address age-specific psychological needs and perceptions in pediatric CF care.
Abstract:
Sixty-one children aged 4-18 years with cystic fibrosis were interviewed about their understanding of the illness and their attitude towards it. Responses were compared across three age groups: 4-6 years, 7-11 years and 12-18 years, corresponding to Piagetian stages of cognitive development. While there was an obvious progression in knowledge with advancing age, the children's attitude to their illness and therapy varied remarkably between age groups. Those in the 4-6 year group were more positive about themselves and about the effect of therapy than those in the older groups. More than half knew that they were born with the illness, in contrast to published reports of healthy children's concepts of illness causation for this age group. Children in the 7-11 year group were least likely to feel better after therapy and were least likely to mention anything positive about having cystic fibrosis, despite having a higher mean Schwachman clinical score than those in the oldest group.
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