Wakefield Donna, Booth Zoe, Fay Michaela, Breckons Matthew
North Tees & Hartlepool NHS Foundation Trust, Stockton-On-Tees, UK.
Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, UK.
Palliat Care Soc Pract. 2025 May 23;19:26323524251340707. doi: 10.1177/26323524251340707. eCollection 2025.
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.
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。
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