克罗恩病儿童经口服全肠内营养体验的质性研究

Experience of Using Oral Exclusive Enteral Nutrition in Children with Crohn’s Disease: A Qualitative Study

目的了解克罗恩病儿童经口服全肠内营养的真实体验,为提高经口服全肠内营养的依从性提供参考依据。方法目的抽样法选取12例患克罗恩病正在进行或经历过口服全肠内营养的患者,对其进行半结构式访谈.并用Colaizzi 7步法分析资料。结果提炼出2个主题:经口服全肠内营养的障碍因素(肠内营养制剂味道不适应、胃肠道不良反应、受上学客观条件的制约、受周围同学的看法影响);经口服全肠内营养的促进因素(适应时间1~2周、父母的积极态度与监督、自我调节、症状改善)。结论克罗恩病儿童经口服全肠内营养体验不佳,需要时间适应,并提高自我管理能力;同时需要家庭、社会多方面的支持与关注,做好针对性干预措施,以改善患儿经口服全肠内营养治疗过程中的自我感受,提高依从性。

Objective To understand the experience of using oral exclusive enteral nutrition in children with Crohn’s disease, and to provide the reference for improving the compliance of oral exclusive enteral nutrition.Methods Totally 12 patients with Crohn’s disease who underwent or experienced oral exclusive enteral nutrition were interviewed in a semi-structured manner, and the data were analyzed by the Colaizzi 7-step method.Results Two themes were extracted, including the obstacle factors of exclusive enteral nutrition(taste maladjustment of enteral nutrition preparation, side effects of gastrointestinal tract, restriction of objective conditions of school, influence of surrounding students’ opinions),and the promotion factors of exclusive enteral nutrition(1-2 weeks of adaptation time, positive attitude and supervision of parents, self-regulation, symptom improvement).Conclusions The experience of children with Crohn’s disease after oral exclusive enteral nutrition is not good. These children need time to adapt, improve their ability of self-management, and need the support of family and society.We should pay more attention to these children and take targeted intervention measures to improve their self-feeling and compliance in the process of oral exclusive enteral nutrition treatment.