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Daily Experiences and Challenges Among Children and Adolescents With Celiac Disease: Focus Group Results
1The Laboratory of Complex Human Activity and Participation (CHAP), Department of Occupational Therapy, Faculty of Social Welfare and Health Sciences, University of Haifa, Mount Carmel, Haifa, Israel.
Insights
Adhering to a gluten-free diet is challenging for children with celiac disease (CD). This study explored their daily life experiences and management difficulties using the ICF-CY model.
Area of Science:
- Pediatrics
- Gastroenterology
- Public Health
Background:
- Celiac disease (CD) requires strict gluten-free diet adherence.
- Adherence to gluten-free diets poses significant challenges for pediatric populations.
- The International Classification of Functioning, Disability and Health: Children and Youth version (ICF-CY) provides a comprehensive framework for understanding health and disability.
Purpose of the Study:
- To explore the everyday life experiences and challenges faced by children and adolescents with CD and their parents.
- To identify crucial components for managing celiac disease in young individuals using the ICF-CY model.
- To lay the groundwork for a standardized questionnaire assessing the needs of pediatric CD patients.
Main Methods:
- Four focus group interviews were conducted.
- Participants included 12 children (8-12 years) and 13 parents, and 10 adolescents (13-16 years) and 10 parents.
- Participants were diagnosed with CD for over 6 months.
Main Results:
- The ICF-CY's body functions component, particularly higher-level cognitive functions like organization and planning, was highly relevant.
- Food-related activities both at home and away were discussed, though detailed activity analysis was limited in existing literature.
- Focus groups highlighted various coping mechanisms related to daily management, participation in food-related activities, and environmental factors.
Conclusions:
- Focus groups revealed a broad range of coping issues pertinent to celiac disease management in children and adolescents.
- Understanding daily management, participation in food-related activities, and environmental influences is key.
- The findings inform the development of tools to better support young individuals with CD.
Objectives:
Maintaining a restrictive gluten-free diet is the only treatment for celiac disease (CD). Adherence among children and adolescents presents unique challenges and is often inadequate. The International Classification of Functioning, Disability and Health: Children and Youth version (ICF-CY) model encompasses all aspects of human health and daily function while dealing with a disease and interacting with the environment. The purpose was to explore everyday life experiences and challenges as perceived by children and adolescents with CD and their parents in light of the ICF-CY concepts to identify the most crucial components in management challenges. The present study was the first stage in developing a standardized questionnaire to assess these needs.
Methods:
Children and adolescents diagnosed with CD for more than 6 months and their parents participated in 4 separate focus group interviews: 12 children (8-12 years) and 13 of their parents, and 10 adolescents (13-16 years) and 10 of their parents.
Results:
The ICF-CY body functions component that includes higher-level cognitive functions, such as organization, planning, and problem solving was largely reflected. Food-related activities in and out of the home were discussed, yet thorough activity analysis was lacking in the available literature.
Conclusions:
The focus groups revealed a wide scope of coping issues that contribute to a deeper understanding of specific CD characteristics including daily management, participation in food-related activities, roles, strategies, and supporting or hindering factors in everyday life with CD.
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