Promoting Effective Self-Management of the Gluten-Free Diet: Children’s and Adolescents’ Self-Generated Do’s and Don’ts

Celiac disease (CD) is a chronic health condition treated by managing a lifelong, strict, and demanding gluten-free diet. Managing the diet entails effective use of self-management skills. This study aimed to explore self-generated procedures children and adolescents with CD in Israel perform when participating in food-related activities considering their self-management skills and health requirements. Participants included children and adolescents with CD, aged 8 to 18 years, that had been diagnosed more than 6 months prior to the study. Parents completed a demographic questionnaire and reported their child’s constancy in adherence to the diet. Children and adolescents were asked to share the things they do themselves to prepare for participating in the various activities. Responses were qualitatively analyzed, and common themes were identified and categorized using directed analysis. Participants were 126 children and adolescents (M(age) = 12.33 yr, SD = 2.85), 67.5% of whom had been diagnosed more than 3 yr prior to the study. Based on parents’ reports, almost all (97.6%) participants “always adhered” to the diet. A total of 10 categories were defined from the qualitative responses describing 125 do and don’t actions used by the children and adolescents to self-manage their diet. The do and don’t actions encompass cognitive planning far beyond the mere act of avoiding gluten. These actions can serve as an initial database of suggested strategies to support acquiring independent self-management. Understanding the cognitive complexity of routinely carrying out the diet while actively participating in everyday activities can assist health professionals in building support and intervention programs, promoting effective self-management, and facilitating optimal adherence to the diet.