Sonya Meyer, Sara Rosenblum; Children With Celiac Disease: Health-Related Quality of Life and Leisure Participation. Am J Occup Ther 2016;70(6):7006220010. https://doi.org/10.5014/ajot.2016.020594
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© 2021 American Occupational Therapy Association
OBJECTIVE. We compared health-related quality-of-life (HRQOL) perceptions of children with celiac disease (CD) with those of their parents to determine whether their leisure participation differs from that of children without CD and whether relationships exist between leisure participation and HRQOL.
METHOD. Children with CD and their parents completed a disease-specific HRQOL self-report questionnaire, the Celiac Disease DUX. These children and matched controls without CD completed the Children’s Leisure Assessment Scale (CLASS).
RESULTS. Parents perceived HRQOL significantly more negatively than did children. No significant group differences were found in leisure participation. However, specific CLASS food-related activities and HRQOL significantly correlated.
CONCLUSION. Hearing the child’s voice in addition to the parents’ is important in determining the HRQOL of children with a chronic condition. Findings contribute to understanding of CD in the context of participation and well-being and can lead to development of occupational performance–based assessments and interventions for children with CD.
Health care services do not sufficiently accommodate the dietary restrictions of people with CD and may limit their participation in various occupational situations.
Occupational therapy’s focus on routines and habits can facilitate the healthy development of children and adolescents with CD and assist them to maintain their health and well-being and self-manage their condition.
Further research can lead to development of occupation-based assessment tools to identify the factors that support or hinder food-related occupational performance in people’s everyday life with CD.
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