首发脑卒中患者疾病稳定期家属照护体验的质性研究
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男,博士在读,护士长,副主任护师

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2022年度同济医院科研基金立项项目(2022D20);2024年度华中科技大学同济医学院护理学院自主创新基金项目(ZZCX2024T002)


Family caregiving experience during stable phase of first-time stroke:a qualitative study
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    目的 探讨首发脑卒中患者疾病稳定期家属照护体验的主要特征及挑战,为制订系统化、家庭支持导向的干预策略提供依据。方法 采用描述性现象学研究设计,以目的抽样选取首发脑卒中疾病稳定期患者的家属照顾者24人进行半结构式访谈,运用Colaizzi七步分析法进行数据分析和主题提炼。结果 首发脑卒中患者疾病稳定期的家属照护体验可归纳为4个主题和9个亚主题:疾病突发带来的身心耗竭(失控感与不确定性冲击,全天候依赖下的身心负荷)、照护实践中的能力困境与支持匮乏(照护能力不足,家庭支持缺位,经济压力叠加照护负担)、生活质量下降与社会角色冲突(生活世界窄化引发生活质量下滑,多重角色冲突)、自我调适与韧性生长(主动挖掘照顾资源、认知重构与情感自救)。结论 脑卒中疾病稳定期,家属面临照护负担激增、照护准备及能力不足的困境。需构建前瞻性过渡期支持体系,构建微观-中观-宏观多元支持网络,并从缺陷补偿转向韧性培育,促进平稳过渡与照护质量提升。

    Abstract:

    Objective To explore the primary characteristics and core challenges of the caregiving experience among family caregivers of first-time stroke patients during the stable phase, so as to provide a basis for developing systematic and family-supported intervention strategies. Methods A descriptive phenomenological study design was adopted. Using purposive sampling, 24 family caregivers of first-time stroke patients in the stable phase were selected for semi-structured interviews. Data were analyzed and themes extracted using the Colaizzi phenomenological analysis method. Results The caregiving experience of family caregivers during the stable phase of first-time stroke can be summarized into 4 themes and 9 subthemes: physical and mental exhaustion triggered by sudden illness (shock from sense of loss of control and uncertainty, physical and mental burden under round-the-clock dependency); capacity dilemmas and support inadequacy in caregiving practice (insufficient caregiving capacity, lack of family support, economic pressure compounded by caregiving burden); decline in quality of life and social role conflicts (narrowing of life world leading to decline in quality of life, multiple role conflicts); and self-adjustment and resilience development (active exploration of caregiving resources, cognitive restructuring and emotional self-rescue). Conclusion Family caregivers face sharply increased care burden along with insufficient preparedness and capability during the stable phase of stroke. There is an urgent need to establish a proactive transitional support system, build a multi-tiered support network across micro, meso, and macro levels, and shift the focus from deficit compensation to resilience cultivation, so as to facilitate smooth transition and improve the quality of care.

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席新学,黄海珊,李玲,陈黛琪,廖宗峰,毛靖,乐静.首发脑卒中患者疾病稳定期家属照护体验的质性研究[J].护理学杂志,2026,41(2):32-35,40

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  • 收稿日期:2025-06-20
  • 最后修改日期:2025-08-30
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  • 在线发布日期: 2026-03-05