Pediatr Gastroenterol Hepatol Nutr.  2024 May;27(3):146-157. 10.5223/pghn.2024.27.3.146.

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

• Kutahyalioglu NS
• Alay GK

• KMID: 2555822
• DOI: http://doi.org/10.5223/pghn.2024.27.3.146

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.

Keyword

Celiac disease; Gluten-free diet; Parents; Qualitative research; Life experiences