Pediatric Gastroenterology, Hepatology & Nutrition

The Korean Society of Pediatric Gastroenterology, Hepatology and Nutrition (대한소아소화기영양학회)
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Lived Experiences of Parents of Children with Celiac Disease: A Descriptive Qualitative Study

  • Nesibe S. Kutahyalioglu (Department of Pediatric Nursing, Faculty of Health Sciences, Karabuk University) ;
  • Gamze Kas Alay (Department of Pediatric Nursing, Postgraduate Education Institute, Istanbul University-Cerrahpasa)
  • Received : 2023.09.19
  • Accepted : 2023.12.07
  • Published : 2024.05.15
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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.

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Acknowledgement

We express our sincere gratitude to Dr. Zeynep Kurnaz for her valuable guidance in methodology and data analysis, and Dr. Kevin R. Mallinson for his final revision, professional editing, and feedback, which improved our manuscript.

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