Abstract:

Objective To understand the nutritional care experience of families of children with short bowel syndrome secondary to intestinal failure，and to provide references for developing scientific and effective nutritional care programs. Methods Using the purposive sampling method，a total of 16 parents of children with intestinal failure secondary to short bowel syndrome who were admitted to a tertiary children’s hospital in Zhejiang province from July 1 to December 31，2022 were selected as the research subjects. 2 semi-structured interviews were conducted a day before and 2 to 3 weeks after the discharge of the children. The Colaizzi 7-step analysis method was used to analyze the interview data. Results It could be summarized into 4 themes and 6 subthemes：①Nutritional care distress changes in stages：feeling overwhelmed in the acute phase；there were more problems in tube feeding，tube maintenance，and complementary food production during the compensatory period；the burden of home nutritional care increased during the recovery period. ②The role conflict between nutritional care-parents caused self-blame and guilt. ③Positive experiences from peer and healthcare support were obtained. ④The medical staff was expected to provide more nutritional support services；it is hoped that systematic nutritional care courses will be set up，and it is hoped that home nutrition care guidance will be given during follow-up after discharge. It is hoped to implement home parenteral nutrition support. Conclusion Parents of children with intestinal failure secondary to short bowel syndrome have many difficulties in nutritional care and change in stages. Their care experience is affected by the relationship with peers，spouses and medical staff，and they look forward to family nutrition support services. Medical staff can assess parents’ nutritional care distress at different stages，carry out systematic and phased nutritional care course training，give psychological counseling and support in time，and provide home parenteral nutrition support services，so as to improve the nutritional status of children.

Key words: Short Bowel Syndrome, Intestinal Failure, Enteral Nutrition, Nutritional Care, Qualitative Study, Pediatric Nursing

摘要：

目的 了解短肠综合征继发肠衰竭患儿父母营养照护的体验，为制订科学有效的营养管理策略提供参考依据。方法 采取目的抽样法，选取2022年7月—12月浙江省某三级甲等儿童医院收治的16例短肠综合征继发肠衰竭患儿的父母作为研究对象，分别于患儿出院前1 d和出院后第2~3周内进行2次半结构式访谈，运用Colaizzi 7步分析法分析访谈资料。结果 共归纳4个主题、6个亚主题。①营养照护困扰呈阶段性变化：急性期感到不知所措；代偿期管饲喂养、管道维护、辅食制作困扰较多；恢复期居家营养照护负担较重。②营养照护者-父母角色冲突致其自责、愧疚。③从同伴和医护人员支持中获得积极体验。④期盼医护人员提供更多的营养支持服务：希望开设系统的营养照护课程；希望出院随访时给予居家营养照护指导；希望实施家庭肠外营养支持。结论 短肠综合征继发肠衰竭患儿父母的营养照护困扰较多且呈阶段性变化，其照护体验受同伴、配偶、医护人员的影响，期待获得家庭肠外营养支持。医护人员可评估患儿父母不同阶段的营养照护困扰，开设系统化、阶段化的营养照护培训课程，及时给予心理疏导，提供家庭肠外营养支持，以改善患儿的营养状况。

关键词: 短肠综合征, 肠衰竭, 肠道营养, 营养照护, 质性研究, 儿科护理学