Gluten-free diet management and well-being in children with celiac disease: A qualitative study.

Abstract

Background: Management of celiac disease (CD) requires adherence to a strict gluten-free diet (GFD). However, little is known about how children with CD manage the GFD. This qualitative study sought to gain a comprehensive understanding of how children with CD experience and navigate the GFD, focusing on their dietary preferences, perceptions, and challenges, as well as the impact of these experiences.

Methods: Fifteen children with CD, aged 8-13 years, who had been following the GFD for a minimum of one year, were interviewed with their parents about their management of the GFD. Reflexive thematic analysis was used to analyze the data.

Results: Children described a range of strategies for managing the GFD. While some adopt problem-focused strategies such as planning ahead and carrying gluten-free foods on their person, others exhibit heightened anxiety and persistent doubts, indicating the need for tailored healthcare support. Importantly, the study uncovers socioecological influences, including social roles, communication patterns, and environmental factors, which shape children's beliefs and coping strategies.

Conclusions: The study underscores the importance of monitoring gluten-related distress, beliefs, and behaviors in children with CD, as well as the broader context of children's lives. To better support children with CD, holistic support may target anxiety to support well-being alongside GFD management.