文献检索文档翻译深度研究
Suppr Zotero 插件Zotero 插件
邀请有礼套餐&价格历史记录

新学期,新优惠

限时优惠:9月1日-9月22日

30天高级会员仅需29元

1天体验卡首发特惠仅需5.99元

了解详情
不再提醒
插件&应用
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
高级版
套餐订阅购买积分包
AI 工具
文献检索文档翻译深度研究
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2025

医疗保健专业人员如何在生命的最后日子里更好地支持家庭护理人员:“家庭声音日记”会有所帮助吗?一项基于社会经济高度贫困地区的定性研究。

How can healthcare professionals better support family caregivers in the final days of life: Could the "Family's Voice Diary" help? A qualitative study based in an area of high socio-economic deprivation.

作者信息

Wakefield Donna, Booth Zoe, Fay Michaela, Breckons Matthew

机构信息

North Tees & Hartlepool NHS Foundation Trust, Stockton-On-Tees, UK.

Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, UK.

出版信息

Palliat Care Soc Pract. 2025 May 23;19:26323524251340707. doi: 10.1177/26323524251340707. eCollection 2025.


DOI:10.1177/26323524251340707
PMID:40417079
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12102567/
Abstract

BACKGROUND: Family caregivers play a vital role in supporting patients at the end of life, a role that can impact their own well-being. Healthcare professionals may feel unprepared to support caregivers. The Family's Voice Diary (FVD) was co-developed with bereaved carers and a wide range of healthcare professionals as a tool to improve caregiver support. OBJECTIVES: To understand challenges carers face in receiving support and whether the FVD has the potential to improve this. DESIGN: Qualitative interviews with thematic analysis. METHODS: Family's Voice Diaries were provided to hospital, hospice and community nursing teams, to be offered to carers when a patient was in their final days of life. Each diary invited carers to return the diary if they wished to volunteer for an interview and/or consent to analysis of the content of their completed FVD. Adverts were circulated inviting healthcare professionals to interview. RESULTS: = 23 diaries were returned, which included written reflections and notes used as an aide memoire to discuss with healthcare professionals. Qualitative interviews were conducted with  = 6 healthcare professionals and  = 1 bereaved carer. Main themes included the carer's reluctance to ask for support and healthcare professionals feeling unprepared to discuss dying. Using the diary as a communication aid to build a collaborative relationship with staff was valued. Barriers to implementation included a lack of understanding of the purpose of the diary. CONCLUSION: This study adds to the evidence base that there is a need for further carer support and clearer communication at the end of life. The diary appears to be valued as an optional addition to prompt communication, aid self-reflection and signpost to further support. Clearer instruction/training on the purpose of the diary could improve its implementation. Further training for healthcare staff, to enable them to feel more comfortable discussing dying with carers and be able to offer support, would be beneficial.

摘要

背景:家庭照顾者在支持临终患者方面发挥着至关重要的作用,这一角色会影响他们自身的幸福感。医疗保健专业人员可能觉得没有做好支持照顾者的准备。《家庭心声日记》(FVD)是与失去亲人的照顾者以及众多医疗保健专业人员共同开发的,作为一种改善对照顾者支持的工具。 目的:了解照顾者在获得支持方面面临的挑战,以及《家庭心声日记》是否有潜力改善这一状况。 设计:采用主题分析的定性访谈。 方法:将《家庭心声日记》提供给医院、临终关怀机构和社区护理团队,在患者生命的最后几天提供给照顾者。每本日记都邀请照顾者如果愿意自愿接受访谈和/或同意分析他们填写完整的《家庭心声日记》的内容,就将日记归还。发布了广告邀请医疗保健专业人员进行访谈。 结果:共归还了23本日记,其中包括书面反思和用作与医疗保健专业人员讨论的备忘录的笔记。对6名医疗保健专业人员和1名失去亲人的照顾者进行了定性访谈。主要主题包括照顾者不愿寻求支持以及医疗保健专业人员觉得没有准备好讨论死亡。将日记用作与工作人员建立合作关系的沟通辅助工具受到重视。实施的障碍包括对日记目的缺乏理解。 结论:本研究进一步证明有必要在临终时为照顾者提供更多支持并进行更清晰的沟通。该日记似乎被视为一种可选的补充,有助于促进沟通、辅助自我反思并为进一步支持指明方向。对日记目的进行更清晰的指导/培训可以改善其实施。为医疗保健人员提供进一步培训,使他们在与照顾者讨论死亡时感觉更自在并能够提供支持,将是有益的。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d220/12102567/1323bec4018d/10.1177_26323524251340707-fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d220/12102567/71e53a5d7b51/10.1177_26323524251340707-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d220/12102567/5c514451f874/10.1177_26323524251340707-fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d220/12102567/1323bec4018d/10.1177_26323524251340707-fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d220/12102567/71e53a5d7b51/10.1177_26323524251340707-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d220/12102567/5c514451f874/10.1177_26323524251340707-fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d220/12102567/1323bec4018d/10.1177_26323524251340707-fig3.jpg

相似文献

[1]
How can healthcare professionals better support family caregivers in the final days of life: Could the "Family's Voice Diary" help? A qualitative study based in an area of high socio-economic deprivation.

Palliat Care Soc Pract. 2025-5-23

[2]
Understanding what affects psychological morbidity in informal carers when providing care at home for patients at the end of life: a systematic qualitative evidence synthesis.

Health Soc Care Deliv Res. 2023-9

[3]
Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT.

Health Technol Assess. 2020-5

[4]
Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds.

Health Soc Care Deliv Res. 2023-6

[5]
Listening to the family's voice: evaluation of a tool to improve symptom control and communication.

Int J Palliat Nurs. 2018-11-2

[6]
Building capability in paediatric palliative care and enhancing education through the voice of parents: the Quality of Care Collaborative Australia.

Palliat Care Soc Pract. 2022-10-6

[7]
Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation.

Palliat Med. 2023-12

[8]
Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study.

BMC Palliat Care. 2015-8-1

[9]
'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Palliat Care Soc Pract. 2024-8-1

[10]
The role of the Carer Support Needs Assessment Tool in palliative home care: A qualitative study of practitioners' perspectives of its impact and mechanisms of action.

Palliat Med. 2016-4

本文引用的文献

[1]
Top Ten Tips Palliative Care Clinicians Should Know About Caring for Family Caregivers.

J Palliat Med. 2024-7

[2]
The end of life experiences of people living with socio-economic deprivation in the developed world: an integrative review.

BMC Palliat Care. 2022-11-5

[3]
The Application of Human-Centered Design Approaches in Health Research and Innovation: A Narrative Review of Current Practices.

JMIR Mhealth Uhealth. 2021-12-6

[4]
How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study.

BMC Palliat Care. 2021-10-18

[5]
The experience of relatives using intensive care diaries: A systematic review and qualitative synthesis.

Int J Nurs Stud. 2021-7

[6]
Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study.

BMJ Open. 2020-12-3

[7]
A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS).

Palliat Med. 2019-6-12

[8]
Nursing interventions to support family caregivers in end-of-life care at home: A systematic narrative review.

Int J Nurs Stud. 2019-4-23

[9]
Socioeconomic position and use of healthcare in the last year of life: A systematic review and meta-analysis.

PLoS Med. 2019-4-23

[10]
Facilitating successful implementation of a person-centred intervention to support family carers within palliative care: a qualitative study of the Carer Support Needs Assessment Tool (CSNAT) intervention.

BMC Palliat Care. 2018-12-20

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

推荐工具

医学文档翻译智能文献检索