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本文引用的文献

1
Informal Caregiver Burden in Palliative Care and the Role of the Family Doctor: A Scoping Review.姑息治疗中的非正式照料者负担与家庭医生的作用:一项范围综述
Healthcare (Basel). 2025 Apr 19;13(8):939. doi: 10.3390/healthcare13080939.
2
Stress as a Risk Factor for Informal Caregiver Burden.压力作为非正式护理者负担的一个风险因素。
Healthcare (Basel). 2025 Mar 26;13(7):731. doi: 10.3390/healthcare13070731.
3
Perceived Training Needs of the Informal Caregivers of Older Adults: A Cross-Sectional Study.老年人非正式照料者的感知培训需求:一项横断面研究。
Healthcare (Basel). 2024 Nov 26;12(23):2369. doi: 10.3390/healthcare12232369.
4
'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.“总得有人来做这件事”:关于家庭在临终关怀中作用的多元观点——一项国际质性研究
Palliat Care Soc Pract. 2024 Aug 1;18:26323524241260425. doi: 10.1177/26323524241260425. eCollection 2024.
5
Spiritual care from the perspective of family caregivers and nurses in palliative care: a qualitative study.从姑息治疗中家庭护理者和护士的角度出发的灵性照护:一项定性研究。
BMC Palliat Care. 2023 Oct 26;22(1):161. doi: 10.1186/s12904-023-01286-2.
6
Qualitative Research in Healthcare: Data Analysis.医疗保健中的定性研究:数据分析。
J Prev Med Public Health. 2023 Mar;56(2):100-110. doi: 10.3961/jpmph.22.471. Epub 2023 Feb 15.
7
Anticipatory grief and experience of providing at-home palliative care among informal caregivers of spouses in Croatia: a qualitative study.克罗地亚配偶非专业照护者的预期悲伤和提供家庭姑息治疗的体验:一项定性研究。
BMC Palliat Care. 2022 Nov 18;21(1):199. doi: 10.1186/s12904-022-01093-1.
8
The Association of Caregiver Characteristics and Caregivers' Perceived Difficulty in Medication Management Tasks.照顾者特征与照顾者对药物管理任务的感知困难之间的关联
Innov Pharm. 2022 Apr 2;13(1). doi: 10.24926/iip.v13i1.4523. eCollection 2022.
9
Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study.丧亲家属在癌症姑息治疗中共同决策的体验:一项定性访谈研究。
BMC Palliat Care. 2021 Sep 7;20(1):137. doi: 10.1186/s12904-021-00833-z.
10
Support received by family members before, at and after an ill person's death.患者去世前、去世时和去世后家属所获得的支持。
BMC Palliat Care. 2021 Jun 24;20(1):92. doi: 10.1186/s12904-021-00800-8.

非正式护理人员的情感和精神挑战:早期移动姑息治疗支持的必要性。

Emotional and Spiritual Challenges of Informal Caregivers: The Need for Early Mobile Palliative Care Support.

作者信息

Husic Samir, Miletic Bojan, Stemberger Kolnik Tamara, Vejzovic Vedrana

机构信息

Department of Palliative Care, Health Centre of Primorje-Gorski Kotar County, 51000 Rijeka, Croatia.

Department of Clinical Medical Sciences, Faculty of Health Studies, University of Rijeka, 51000 Rijeka, Croatia.

出版信息

Nurs Rep. 2025 Sep 8;15(9):327. doi: 10.3390/nursrep15090327.

DOI:10.3390/nursrep15090327
PMID:41003282
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12472654/
Abstract

: Informal caregivers play an important role in the palliative care of terminally ill family members at home. However, they often lack sufficient professional support, particularly in coping with emotional, spiritual, and practical challenges. This study aimed to explore caregivers' experiences of providing care to a terminally ill family member at home. : A qualitative approach was used to collect information from informal caregivers. Data were collected through interviews, and thematic analysis was used to identify the main challenges, coping mechanisms, and perceptions related to palliative care. : The study resulted in three themes: Involvement of professionals; The reality and dignity of death, and Life after death. Caregivers often associate palliative care exclusively with the last days of life, leading to delayed involvement of the mobile palliative care team. They stated that they preferred home care to hospital care and associated this with more positive experiences at the end of life. However, many reported feelings of loneliness and emotional distress, indicating a lack of appropriate psychological support. Spiritual care is often confused with religious practices, indicating a need for further education. : The early involvement of mobile palliative care teams improves coping, facilitates a more humane dying process at home, and can reduce the emotional burden on caregivers.

摘要

非正式照护者在居家为绝症家庭成员提供姑息治疗方面发挥着重要作用。然而,他们往往缺乏足够的专业支持,尤其是在应对情感、精神和实际挑战方面。本研究旨在探讨照护者在家中为绝症家庭成员提供照护的经历。

采用定性研究方法从非正式照护者那里收集信息。通过访谈收集数据,并运用主题分析法来确定与姑息治疗相关的主要挑战、应对机制和看法。

该研究得出了三个主题

专业人员的参与;死亡的现实与尊严,以及死后的生活。照护者常常将姑息治疗仅仅与生命的最后几天联系起来,导致移动姑息治疗团队的介入延迟。他们表示,比起住院治疗,他们更倾向于居家照护,并认为这与生命末期更积极的体验相关。然而,许多人报告感到孤独和情绪困扰,这表明缺乏适当的心理支持。精神照护常常与宗教活动相混淆,这表明需要进一步开展教育。

移动姑息治疗团队的早期介入能改善应对情况,在家中促成更人道的死亡过程,并可减轻照护者的情感负担。