痴呆症患者和家庭照护者对痴呆症姑息关怀模式表示欢迎,但对其实施持怀疑态度。

Siobhan Fox, Mary Faherty, Jonathan Drennan, Suzanne Guerin, W George Kernohan, Aileen Murphy, Suzanne Timmons
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引用次数: 0

摘要

简介姑息关怀方法可以改善痴呆症患者的生活质量。许多痴呆症患者都希望能在家中生活直至死亡,并得到适当的护理。要在社区中开发出成功的痴呆症姑息关怀模式,就必须吸收受影响者的观点和经验。本研究的指导性问题是痴呆症患者和家庭照护者对痴呆症姑息关怀模式的看法是什么?方法:与失去亲人者或目前的家庭照护者(11 人)和痴呆症患者(2 人)进行了焦点小组讨论(3 个小组)。讨论围绕痴呆症姑息关怀的建议模式展开。这些讨论均已转录,并采用主题分析法进行了分析:结果:确定了三大主题:痴呆症患者的生存和死亡;减轻照护者的负担以实现居家照护的愿望;以及对医疗保健系统缺乏信心。有一句话对分析进行了总结"痴呆症姑息关怀是一个梦想,但不是现实"。这反映了参与者对这一 "理想 "照护模式的反复 "希望",但同时又基于他们以往的医疗服务经验,对这一模式的实施持怀疑态度:所有参与者都对所提出的痴呆症姑息关怀模式表示欢迎,并普遍对姑息关怀这一与痴呆症相关的概念持肯定态度。大家一致认为,该模式将使痴呆症患者能够安度晚年,减轻照护者的负担,从而实现留在家中的愿望。然而,要真正实现以人为本、全面、个性化和灵活的照护模式,还需要对医疗系统进行系统性的改革。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
People with dementia and family carers are welcoming of a model of dementia palliative care, but sceptical of its implementation.

Introduction: A palliative care approach can improve quality-of-life for people with dementia. It is the preference of many people with dementia to remain living at home until death, with the appropriate care. To develop a successful model for dementia palliative care in the community, it is essential to assimilate the perspectives and experiences of those affected. The guiding research question for this study was: What are people with dementia and family carers' views on a model for dementia palliative care?.

Methods: Focus groups (n = 3) were conducted with bereaved or current family carers (n = 11), and people with dementia (n = 2). Discussions centred around a proposed model of dementia palliative care. These were transcribed and analysed using thematic analysis.

Results: Three main themes were identified: living and dying well with dementia; reducing carer burden to fulfil the wish for home care; and lack of faith in the healthcare system. One statement which summarised the analysis was: "Dementia palliative care is a dream, but not a reality." This reflected participants' repeated "wish" for this "ideal" model of care, but simultaneous scepticism regarding its implementation, based on their prior experiences of healthcare services.

Conclusion: All participants were welcoming of the proposed model for dementia palliative care and were generally positive about palliative care as a concept relating to dementia. There was consensus that the model would allow people to live and die well with dementia, and reducing the carer burden would fulfil the wish to remain at home. However systemic changes in the healthcare system will be needed to facilitate a truly person-centred, holistic, individualised and flexible model of care.

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