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我变成了我们,但我在哪里?照顾痴呆亲属时的统一-分裂悖论:一项定性研究。

I becomes we, but where is me? The unity-division paradox when caring for a relative with dementia: A qualitative study.

作者信息

Tierney Stephanie, Tutton Elizabeth, Seers Kate

机构信息

Warwick Research in Nursing, Warwick Medical School, The University of Warwick, Coventry, UK.

Nuffield Department of Primary Care, Radcliffe Observatory Quarter, Oxford, UK.

出版信息

Int J Older People Nurs. 2019 Dec;14(4):e12263. doi: 10.1111/opn.12263. Epub 2019 Jul 29.

DOI:10.1111/opn.12263
PMID:31355532
Abstract

BACKGROUND

The number of older people living with dementia is increasing. Admiral Nurses work with these individuals and their families in the UK to manage challenges associated with the condition, providing guidance, advice and reassurance, alongside practical solutions.

AIM

To explore the input of Admiral Nurses as part of people's journey to becoming and being a carer for someone with dementia.

DESIGN

A qualitative study was conducted to describe and understand how Admiral Nurses are experienced and encountered by carers as part of their narrative around supporting a relative with dementia.

METHODS

Semi-structured interviews were conducted with 19 carers between November 2017-April 2018. They lasted between 45 and 90 min. Thematic analysis was used to interpret data.

FINDINGS

An overarching concept of "the unity-division paradox" was derived from the data. This highlights the complex interchange between the carer with (a) the person with dementia, (b) other individuals and (c) external services. Such interactions can make carers feel part of a larger network (unity) but also as if they are on their own, fighting on behalf of the person with dementia (division). This concept was underpinned by the following themes: (a) I becomes we; (b) My private world is encroached by dementia; (c) I'm left navigating an unwieldy system; (d) Are you with or against us?; and (e) Recreating boundaries to rediscover me.

CONCLUSION

The identity and unique characteristics and interests of those caring for a person with dementia may be lost as they encounter tensions associated with the unity-division paradox. Admiral Nurses can help carers feel less alone in managing internal and external struggles by supporting them to do their best for a loved one with dementia.

IMPLICATIONS FOR PRACTICE

Understanding carers' experience and supporting their work may help to increase and sustain their capacity to provide care.

摘要

背景

患有痴呆症的老年人数量正在增加。在英国, Admiral护士与这些患者及其家人合作,应对与该疾病相关的挑战,提供指导、建议和安慰,并给出切实可行的解决方案。

目的

探讨Admiral护士在人们成为痴呆症患者护理者并履行护理职责过程中的作用。

设计

开展一项定性研究,以描述和理解护理者如何看待Admiral护士,以及在他们讲述照顾痴呆症亲属的经历时,Admiral护士是如何参与其中的。

方法

2017年11月至2018年4月期间,对19名护理者进行了半结构化访谈。访谈持续45至90分钟。采用主题分析法对数据进行解读。

结果

从数据中得出了一个总体概念“统一-分裂悖论”。这凸显了护理者与(a)痴呆症患者、(b)其他个体以及(c)外部服务之间复杂的相互作用。这种互动会让护理者感觉自己是一个更大网络的一部分(统一),但同时又好像他们是独自为痴呆症患者抗争(分裂)。这一概念由以下主题支撑:(a)我变成了我们;(b)我的私人世界被痴呆症侵蚀;(c)我要在一个难以驾驭的系统中摸索前行;(d)你是支持我们还是反对我们?;(e)重新划定界限以重新找回自我。

结论

照顾痴呆症患者的人在面对与统一-分裂悖论相关的紧张关系时,其身份以及独特的性格和兴趣可能会丧失。Admiral护士可以通过支持护理者为患有痴呆症的亲人尽最大努力,帮助他们在应对内部和外部挣扎时减少孤独感。

对实践的启示

了解护理者的经历并支持他们的工作,可能有助于提高并维持他们提供护理的能力。

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