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“现在有人去过那里吗?”:一项关于临终患者非正式远程照顾者的支持经历和未满足需求的访谈研究

"Has Anyone Been There Now?": An Interview Study on the Support Experiences and Unmet Needs of Informal Long-Distance Caregivers for Patients at the End of Life.

作者信息

Herbst Franziska A, Stiel Stephanie

机构信息

Hannover Medical School, Institute for General Practice and Palliative Care, Hanover, Germany.

出版信息

Omega (Westport). 2024 Mar 29:302228241243110. doi: 10.1177/00302228241243110.

Abstract

In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

摘要

在德国的背景下,对于那些与患病亲属在地理上相距较远的临终患者的非正式照料者的支持经历和未得到满足的需求,相关研究较为匮乏。当前的研究旨在加深我们对非正式远程照料者在临终时的具体支持经历和需求的理解。该研究采用了探索性设计,运用了定性访谈方法。33名远程家庭照料者参与了这项研究(2021年12月至2022年10月)。结果表明,远程照料者依赖于与当地的家庭和非亲属照料者进行密切的交流与合作。他们还表示希望专业照料者能更积极地考虑他们特殊的地理状况。他们进一步建议建立当地的照料网络以支持患者。从远程照料者对支持干预措施的建议中推导出了假设。这些结果可能有助于开发一个针对临终时的远程照料者的在线信息资源。

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