Nicholls Harriet, Carey Matthew, Hambridge Kevin
School of Nursing and Midwifery, University of Plymouth, Plymouth, UK.
School of Health and Social Wellbeing University of the West of England, BristolUK.
Palliat Support Care. 2025 Jan 24;23:e44. doi: 10.1017/S1478951524001895.
People with life-limiting diseases, who are no longer receiving active or curable treatment, often state their preferred place of care and death as the home. This requires coordinating a multidisciplinary approach, using available health and social care services to synchronize care. Family caregivers are key to enabling home-based end-of-life support; however, the 2 elements that facilitate success - coordination and family caregiver - are not necessarily associated as being intertwined or one and the same. This narrative review explores family caregiver experiences of coordinating end-of-life care in the home setting.
Studies were identified systematically following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A search of 5 databases (CINAHL, AMED, MEDLINE, Joanna Briggs Institute for Systematic Reviews, and the Cochrane Database) was conducted using Medical Subject Headings search terms and Boolean operators. Seven hundred and eighty papers were screened. Quality assessment was conducted using the JBI Critical Appraisal Checklist for Qualitative Research. Characteristics of included studies were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) extraction tool.
Ten qualitative studies were included. A meta-aggregative approach was used to assemble findings and categories extracted from the included papers, which led to identification of 3 overall themes: (1) family caregiver identity, (2) strategies for care, and (3) practicalities of care.
Research suggests there should be a designated care coordinator to support people nearing the end of life at home. However, this review shows that family caregivers intrinsically take on this role. Their experiences, frequently share commonalities across different cultures and regions, highlighting the universal nature of their challenges. Difficulties associated with providing home-based care are evident, but the undertaking of care coordination by relatives highlights a need for a change in approach. Future studies could explore the impact of having a designated "facilitator" or single point of contact for families, as well as the development of tailored communication strategies.
患有危及生命疾病且不再接受积极治疗或无法治愈的患者，通常表示他们希望在自己家中接受护理直至离世。这需要采用多学科方法进行协调，利用现有的医疗和社会护理服务来同步护理工作。家庭护理人员是实现居家临终关怀支持的关键；然而，促成成功的两个要素——协调和家庭护理人员——并不一定相互交织或等同。本叙述性综述探讨了家庭护理人员在居家环境中协调临终护理的经历。
按照系统评价和荟萃分析的首选报告项目（PRISMA）指南系统地识别研究。使用医学主题词检索词和布尔运算符对5个数据库（CINAHL、AMED、MEDLINE、乔安娜·布里格斯循证卫生保健中心系统评价数据库和考克兰系统评价数据库）进行了检索。共筛选出780篇论文。使用JBI定性研究批判性评价清单进行质量评估。使用乔安娜·布里格斯循证卫生保健中心定性评估与综述工具（JBI-QARI）提取工具提取纳入研究的特征。
纳入了10项定性研究。采用元聚合方法汇总纳入论文中提取的研究结果和类别，从而确定了3个总体主题：（1）家庭护理人员的身份，（2）护理策略，以及（3）护理的实际情况。
研究表明，应该有一名指定的护理协调员来支持在家中接近生命终点的患者。然而，本综述表明，家庭护理人员本质上承担了这一角色。他们的经历在不同文化和地区常常有共同之处，凸显了他们所面临挑战的普遍性。提供居家护理相关的困难显而易见，但亲属承担护理协调工作凸显了方法改变的必要性。未来的研究可以探讨为家庭设立一名指定的“协调员”或单一联络点的影响，以及制定量身定制的沟通策略。
