Lived Experiences of Parents of Children with Celiac Disease: A Descriptive Qualitative Study.

Abstract

Purpose: Celiac disease (CD) is one of the most prevalent food-related illnesses in children, with a global prevalence of approximately 1.4%. CD can create an emotional burden, particularly on mothers, who are mainly responsible for managing challenges related to adherence to a gluten-free diet, high food costs, and food problems in schools and social areas. There is a gap in the literature, and parental experiences of raising children with CD should be explicitly examined. This qualitative study sought to provide insights into the experiences of parents raising a child with CD in the Turkish context.

Methods: This study used a descriptive qualitative research methodology and conducted individual semi-structured video-based dyadic interviews with 19 parents.

Results: Participants experienced both challenges and motivators through management of their children's CD. Analyses of the interview transcripts through the data uncovered three main themes focusing primarily on parental concerns: (1) parental challenges in child's disease management, (2) supportive care needs, and (3) parental expectations.

Conclusion: A multidisciplinary team should approach the child and family immediately after diagnosis, and facilities should support parents with continuing education and psychological, financial, and social assistance.