Daily experiences and challenges among children and adolescents with celiac disease: Focus group results

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.