“我做了我不想做的事情……”:了解痴呆症患者家庭护理人员的日常生活。

IF 2.2
Jacoba Huizenga, Sascha Bolt, Jean Pierre Wilken, Nienke Bleijenberg, John Keady, Tine Van Regenmortel
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引用次数: 0

摘要

在进行这项研究的荷兰,大约有80万痴呆症患者的家庭护理人员。对痴呆症患者及其家庭照顾者的需求和优先事项进行研究,对于制定有针对性的护理和有意义的支持至关重要。然而,目前的研究缺乏对在家照顾痴呆症患者的日常生活经历的关注。因此,本研究旨在解决的研究问题是:痴呆症患者的家庭照顾者如何在照顾的环境中对待和体验他们的日常生活?该研究采用了定性设计,以现象学方法为基础。15名家庭照顾者(10名伴侣和5名成年子女)参加了公开访谈。专题分析用于记录和构建数据。通过与六名家庭护理人员(所有护理伙伴)的焦点小组,对紧急发现进行了成员检查。这一过程产生了四个独立但相互关联的主题,反映了家庭照顾者如何在家中照顾痴呆症患者的方法和经验,即:(1)找到并保持有效的常规;(2)关注小时刻;(3)再平衡连接;(4)超前思考。这些主题还强调了日常生活不断变化的本质,这对家庭照顾者来说是不断变化的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
'I do Things that I don't Really Want to do …': Understanding the Everyday Lives of Family Carers of People With Dementia.

In the Netherlands, where this study was conducted, there are around 800,000 family carers of people with dementia. Research into the needs and priorities of people with dementia and their family carers is crucial for developing tailored care and meaningful support. However, current research lacks attention to the everyday life experiences of caring for someone with dementia at home. Therefore, the research question this study aimed to address was: how do family carers of people with dementia living at home approach and experience their everyday life in a caring context? The study used a qualitative design, underpinned by a phenomenological approach. 15 family carers (10 partners and five adult children) participated in open interviews. Thematic analysis was used to document and structure the data. A member check was performed on the emergent findings through a focus group with six family carers (all care partners). This process resulted in four discrete but interlinked themes that reflected how family carers approach and experience caring at home for a person with dementia, namely: (1) Finding and keeping routines that work; (2) Focussing on small moments; (3) Rebalancing connections; and (4) Thinking ahead. These themes also emphasise the unfolding nature of everyday life that is constantly changing for family carers.

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