Abstract:

Objective To explore the experiences of children with Crohn’s disease and their parents regarding the exclusion diet，and to provide a basis for formulating personalized dietary guidance programs. Methods A total of 12 children with Crohn’s disease and their parents，hospitalized in the Department of Gastroenterology at a tertiary children’s hospital in Guangzhou from June to December 2023，were selected as research subjects using objective sampling. Semi-structured interviews were conducted，and the data were analyzed and refined using Colaizzi’s seven-step analysis method. Results Totally 3 themes and 14 sub-themes were extracted. ①Lack of cognition and trust in Crohn’s disease exclusion diet（unfamiliarity with the contents of the diet，misunderstanding of the diet’s preparation，inadequate response to daily exclusion diet practices，parents’ distrust in the exclusion diet）. ②The practical challenges of the Crohn’s disease exclusion diet（the challenge of personal dietary preferences，the challenge of family meal preparation，the challenge of school feeding，food intolerance，feelings of monotony and weariness following the exclusion diet）. ③Innovations in practicing the Crohn’s disease exclusion diet （managing taste fatigue，managing visual fatigue，innovative cooking methods，prioritizing exclusive enteral nutrition followed by the exclusion diet，overcoming the desire for universal food）. Conclusion Children with Crohn’s disease and their parents exhibit insufficient cognition and trust in the exclusion diet and face various challenges in practice. Clinical medical staff should adopt personalized coping strategies tailored to the specific circumstances of each child.

Key words: Crohn’s Disease Exclusion Diet, Experience, Qualitative Research, Pediatric Nursing

摘要：

目的 探讨克罗恩病患儿及其父母行排除性饮食的体验，为制订个性化的饮食指导方案提供依据。方法 采用目的抽样法，选取2023年6—12月在广州市某三级甲等儿童专科医院消化内科住院的12例克罗恩病患儿及其父母作为研究对象，进行半结构式访谈，通过Colaizzi 7步分析法进行资料分析、归纳及主题提炼。结果 共提炼出对克罗恩病排除性饮食的认知与信任不足（对食谱的内容不熟悉；对食谱的制作不了解；排除性饮食日常实践应对不足；患儿父母对排除性饮食的信任不足）、行克罗恩病排除性饮食的实践挑战（个性化饮食偏好受到挑战；家庭制作排除性饮食存在挑战；学校无法提供排除性饮食；食物不耐受；行排除性饮食后的单调感与厌腻感）、行克罗恩病排除性饮食的实践创新（味觉疲劳管理；视觉疲劳管理；创新烹饪技巧；先行全肠内营养，继以排除性饮食；采取多种措施克服普食欲望）3个主题及14个亚主题。结论 克罗恩病患儿及其父母对排除性饮食存在认知与信任不足，在实践过程中面临多种挑战，临床医护人员应根据患儿具体情况采用个性化的应对策略进行指导。

关键词: 克罗恩病排除性饮食, 体验, 质性研究, 儿科护理学