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晚期癌症患者居家临终关怀中的家庭经历、需求与认知:元整合与系统评价

Family Experiences, Needs, and Perceptions in Home-Based Hospice Care for Patients With Terminal Cancer: Meta-Synthesis and Systematic Review.

作者信息

Deng Xin Ming, Hounsri Kanokwan, Lopez Violeta, Tam Wilson Wai-San

机构信息

Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, 10 Medical Dr, Singapore, 117597, Singapore, 65 90505570.

School of Nursing, Midwifery and Social Sciences, Central Queensland University, Rockhampton, Australia.

出版信息

JMIR Cancer. 2025 Jun 19;11:e71596. doi: 10.2196/71596.

Abstract

BACKGROUND

Home-based hospice care offers patients with terminal cancer the comfort of receiving care in a familiar environment while enabling family members to provide personalised support. Despite the critical role families play, the literature remains underexplored in terms of their experiences, needs, and perceptions. A robust qualitative synthesis is needed to inform improvements in palliative care services.

OBJECTIVE

This meta-synthesis aims to systematically review and synthesize qualitative evidence regarding the experiences, needs, and perceptions of family caregivers in home-based hospice care for patients with terminal cancer. The goal is identifying key themes that can improve caregiver support and service delivery.

METHODS

A systematic search was conducted across MEDLINE, Embase, Scopus, PsycINFO, CINAHL, Google Scholar, and relevant gray literature sources up to March 14, 2025. Studies were included if they focused on family caregivers' experiences in home-based hospice care settings, excluding those that addressed only patients or health care providers. Two independent reviewers performed study selection, data extraction, and quality assessment using the Critical Appraisal Skills Programme checklist. Data were synthesized using a 3-step thematic synthesis approach, and the confidence in the findings was assessed via the GRADE-CERQual (Grading of Recommendations Assessment, Development, and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research) framework.

RESULTS

Five studies published between 1989 and 2022 from diverse geographical regions (including Asia and Western settings) met the inclusion criteria. Two major themes emerged: (1) being physically and emotionally present, where caregivers expressed a strong commitment to remain with their loved ones, providing emotional support and maintaining a sense of control; and (2) sharing responsibilities, which underscored the importance of both formal support from palliative care teams and informal support from family and friends in mitigating caregiver burden. These findings directly address the study's aims by illustrating how caregivers balance emotional commitment with the practical challenges of providing home-based care.

CONCLUSIONS

Although family caregivers are dedicated to delivering high-quality, personalized care, they encounter significant emotional and logistical challenges. Variability in study settings, potential recall bias from retrospective interviews, and limited gray literature access may affect the generalizability of the findings. This meta-synthesis underscores the essential role of family involvement in home-based hospice care for patients with terminal cancer. The combined reliance on emotional commitment and shared responsibilities-with support from professional care teams-is vital for optimal care delivery. Future interventions should enhance formal and informal support systems to meet family caregivers' diverse needs better.

摘要

背景

居家临终关怀护理使晚期癌症患者能够在熟悉的环境中接受护理并感到舒适,同时使家庭成员能够提供个性化的支持。尽管家庭发挥着关键作用,但关于他们的经历、需求和看法的文献仍未得到充分探讨。需要进行有力的定性综合分析,为改善姑息治疗服务提供依据。

目的

本元综合分析旨在系统回顾和综合关于居家临终关怀护理中晚期癌症患者家庭照顾者的经历、需求和看法的定性证据。目标是确定可以改善照顾者支持和服务提供的关键主题。

方法

截至2025年3月14日,在MEDLINE、Embase、Scopus、PsycINFO、CINAHL、谷歌学术搜索以及相关灰色文献来源中进行了系统检索。如果研究聚焦于家庭照顾者在居家临终关怀护理环境中的经历,则纳入研究,排除仅涉及患者或医疗服务提供者的研究。两名独立评审员使用批判性评估技能计划清单进行研究选择、数据提取和质量评估。数据使用三步主题综合方法进行综合,并通过GRADE-CERQual(推荐分级评估、制定和评价 - 定性研究综述证据的可信度)框架评估研究结果的可信度。

结果

1989年至2022年间发表的来自不同地理区域(包括亚洲和西方地区)的五项研究符合纳入标准。出现了两个主要主题:(1)身心陪伴,照顾者表示有强烈的意愿陪伴亲人,提供情感支持并保持掌控感;(2)分担责任,强调了姑息治疗团队的正式支持以及家人和朋友的非正式支持在减轻照顾者负担方面的重要性。这些发现通过说明照顾者如何在情感投入与提供居家护理的实际挑战之间取得平衡,直接回应了研究目的。

结论

尽管家庭照顾者致力于提供高质量的个性化护理,但他们面临着重大的情感和后勤挑战。研究环境的差异、回顾性访谈可能存在的回忆偏差以及灰色文献获取有限,可能会影响研究结果的普遍性。本元综合分析强调了家庭参与居家临终关怀护理对晚期癌症患者的重要作用。在专业护理团队的支持下,情感投入和分担责任相结合对于提供最佳护理至关重要。未来的干预措施应加强正式和非正式支持系统,以更好地满足家庭照顾者的多样化需求。

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