无声的声音：家庭照顾者参与姑息治疗的叙述
Silent voices: Family caregivers' narratives of involvement in palliative care.
作者信息
Tarberg Anett Skorpen, Kvangarsnes Marit, Hole Torstein, Thronæs Morten, Madssen Torfinn Støve, Landstad Bodil J
机构信息
Helse Møre og Romsdal Hospital Trust Ålesund Norway.
European Palliative Care Research Centre (PRC), Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences Norwegian University of Science and Technology (NTNU) Trondheim Norway.
出版信息
Nurs Open. 2019 Aug 10;6(4):1446-1454. doi: 10.1002/nop2.344. eCollection 2019 Oct.
AIM
To explore how family caregivers experience involvement in palliative care.
DESIGN
A qualitative design with a narrative approach was used.
METHODS
Purposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid-Norway between November 2016-May 2017.
RESULTS
We identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient-centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow-up after death. Family caregivers experienced low level of involvement throughout the palliative pathway.
CONCLUSION
The involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home-based care.
目的
探讨家庭照顾者参与姑息治疗的体验。
设计
采用叙事方法的质性设计。
方法
进行目的抽样和叙事访谈。2016年11月至2017年5月期间，在挪威中部对11名接受姑息治疗的癌症患者的丧亲家庭照顾者进行了访谈。
结果
我们确定了与家庭照顾者在姑息治疗的早期、中期、末期和丧亲阶段参与体验相关的四个主题：(a) 早期参与有限；(b) 中期强调以患者为中心的护理；(c) 对临终阶段缺乏准备；(d) 死后缺乏系统的随访。家庭照顾者在整个姑息治疗过程中体验到的参与程度较低。
结论
家庭照顾者在姑息治疗中的参与可能与其责任不成正比。应在护理教育中关注家庭照顾者的需求，使护士有能力支持家庭照顾者提供居家护理。
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