Abstract:

Objective To understand the burden experience of the caregivers of children with short bowel syndrome（SBS）,and to provide references for making individual effective nursing interventions.Methods Using qualitative research,questions were set based on the Social Ecological Theory before the interview,then a semi-structured interview was conducted on 16 caregivers of children with SBS. Data were transcribed and analyzed using Colaizzi’s method.Results The burden experience of caregivers of children with SBS can be summarized into 3 themes,including micro system-caregiver distress and growth coexist,mezzo system-changes of lifestyle,macro system-weak support system.Conclusion The caregivers of children with SBS reported poor social ecological system,and there is a heavy burden of care. Nursing staff should implement START intervention,provide professional guidance through “Internet +Nursing Service”,construct family-centered collaborative nursing model in order to improve the health level of children and their caregivers.

Key words: Social Ecosystem Theory, Short Bowel Syndrome, Child, Caregivers, Burden Experience, Qualitative Study, Nursing Care

摘要：

目的 了解短肠综合征患儿照护者照顾过程中的负担体验,为制订个体化的有效护理干预提供参考依据。方法 采用质性研究方法,基于社会生态系统理论设置访谈提纲,于2021年7月1日—9月1日对16名短肠综合征患儿照护者进行半结构式访谈,运用Colaizzi现象学7步分析法分析访谈资料。结果 短肠综合征患儿照护者的负担体验可归纳为3个主题：微观系统-照护者困扰和成长并存;中观系统-生活模式改变;宏观系统-支持系统不足。结论 短肠综合征患儿照护者社会生态系统不容乐观,普遍存在较重的照护负担,可尝试实施“亲属策略”、开展“互联网+护理服务”,以提供专业指导、构建以家庭为中心的协同护理模式,提高患儿及其照护者的健康水平。

关键词: 社会生态系统理论, 短肠综合征, 儿童, 照护者, 负担体验, 质性研究, 护理