Kutahyalioglu Nesibe S, Kaş Alay Gamze
Department of Pediatric Nursing, Faculty of Health Sciences, Karabük University, Karabük, Turkey.
Department of Pediatric Nursing, Postgraduate Education Institute, Istanbul University-Cerrahpaşa, Istanbul, Turkey.
Pediatr Gastroenterol Hepatol Nutr. 2024 May;27(3):146-157. doi: 10.5223/pghn.2024.27.3.146. Epub 2024 May 7.
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.
This study used a descriptive qualitative research methodology and conducted individual semi-structured video-based dyadic interviews with 19 parents.
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.
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.
乳糜泻（CD）是儿童中最常见的与食物相关的疾病之一，全球患病率约为1.4%。CD会造成情感负担，尤其是对母亲而言，她们主要负责应对与坚持无麸质饮食、高昂的食品成本以及学校和社交场合中的食物问题相关的挑战。文献中存在空白，应明确审视抚养患有CD的孩子的父母的经历。这项定性研究旨在深入了解在土耳其背景下抚养患有CD的孩子的父母的经历。
本研究采用描述性定性研究方法，对19对父母进行了基于视频的个体半结构化二元访谈。
通过管理孩子的CD，参与者既经历了挑战，也有了动力。通过对访谈记录进行数据分析，发现了三个主要主题，主要集中在父母的担忧上：（1）父母在孩子疾病管理方面的挑战，（2）支持性护理需求，以及（3）父母的期望。
多学科团队应在诊断后立即对孩子和家庭进行干预，医疗机构应通过继续教育以及心理、经济和社会援助来支持父母。
