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当患者选择在家中离世时,他们想要的是……舒适、家庭:社区姑息治疗护理的辉煌。

'When a patient chooses to die at home, that's what they want… comfort, home': Brilliance in community-based palliative care nursing.

机构信息

School of Business, Western Sydney University, Parramatta, New South Wales, Australia.

School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia.

出版信息

Health Expect. 2023 Aug;26(4):1716-1725. doi: 10.1111/hex.13780. Epub 2023 Jun 9.

Abstract

INTRODUCTION

To redress the scholarly preoccupation with gaps, issues, and problems in palliative care, this article extends previous findings on what constitutes brilliant palliative care to ask what brilliant nursing practices are supported and promoted.

METHODS

This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). From August 2015 to May 2017, inclusive, nurses affiliated with a community health service who delivered palliative care, contributed to this study as co-researchers (n = 4) or participants (n = 20). Patients who received palliative care (n = 30) and carers (n = 16) contributed as secondary participants, as they were part of observed instances of palliative care. With a particular focus on the practices and experiences that exceeded expectations and brought joy and delight, the study involved capturing video-recordings of community-based palliative care in situ; reflexively analysing the recordings with the nurses; as well as ethnography to witness, experience, and understand practices and experiences. Data were analysed, teleologically, to clarify what brilliant practices were supported and promoted.

RESULTS

Brilliant community-based palliative care nursing largely involved maintaining normality in patients' and carers' lives. The nurses demonstrated this by masking the clinical aspects of their role, normalising these aspects, and appreciating alternative 'normals'.

CONCLUSION

Redressing the scholarly preoccupation with gaps, issues, and problems in palliative care, this article demonstrates how what is ordinary is extraordinary. Specifically, given the intrusiveness and abnormalising effects of technical clinical interventions, brilliant community-based palliative care can be realised when nurses enact practices that serve to promote a patient or carer to normality.

PATIENT OR PUBLIC CONTRIBUTION

Patients and carers contributed to this study as participants, while nurses contributed to this study as co-researchers in the conduct of the study, the analysis and interpretation of the data, and the preparation of the article.

摘要

介绍

为了纠正姑息治疗学术研究中对差距、问题和挑战的过分关注,本文扩展了先前关于构成卓越姑息治疗的发现,以探讨支持和促进哪些卓越护理实践。

方法

本研究采用 POSH-VRE 方法,将医疗保健中的积极组织学术研究(POSH)与视频反思民族志(VRE)相结合。从 2015 年 8 月到 2017 年 5 月,隶属于社区卫生服务机构并提供姑息治疗的护士作为共同研究员(n=4)或参与者(n=20)参与了这项研究。接受姑息治疗的患者(n=30)和照顾者(n=16)作为次要参与者做出了贡献,因为他们是观察到的姑息治疗实例的一部分。本研究特别关注超出预期、带来欢乐和喜悦的实践和经验,包括在现场拍摄社区姑息治疗的视频记录;与护士一起对记录进行反思性分析;以及见证、体验和理解实践和经验的民族志。从目的论上对数据进行分析,以明确支持和促进哪些卓越实践。

结果

卓越的社区姑息治疗护理主要涉及维持患者和照顾者生活的常态。护士通过掩盖其角色的临床方面,使这些方面正常化,并欣赏替代的“常态”来实现这一点。

结论

纠正姑息治疗学术研究中对差距、问题和挑战的过分关注,本文展示了平凡如何变得非凡。具体来说,鉴于技术临床干预的侵入性和使正常化的效果,当护士实施促进患者或照顾者正常化的实践时,可以实现卓越的社区姑息治疗。

患者或公众的贡献

患者和照顾者作为参与者为这项研究做出了贡献,而护士作为共同研究员参与了这项研究,参与了研究的进行、数据的分析和解释以及文章的准备。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f540/10349220/28827805ffb2/HEX-26--g002.jpg

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