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首页> 外文期刊>Progress in Palliative Care >Proof of love and other themes: a qualitative exploration of the experience of caring for people with motor neurone disease
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Proof of love and other themes: a qualitative exploration of the experience of caring for people with motor neurone disease

机译：爱和其他主题的证明：对运动神经元疾病患者的护理经验的定性探索

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Background: Motor neurone disease (MND) remains universally fatal despite the introduction of disease-modifying therapy in the form of the glutamate inhibitor, riluzole. Caring for people with MND presents enormous challenges, many of which are particular to the disease complex. An understanding of the carer burden is required in order to inform the delivery of palliative care to MND patients and their carers.Aim: To explore the experiences and perceptions of carers and former carers of people with MND with emphasis on the later stages of the disease.Participants and Methods: Focus groups were conducted with two groups of former carers and one group of current carers recruited through the Motor Neurone Disease Association of NSW. Recruitment continued until no new themes emerged. The discussions were taped, transcribed verbatim and content analysed.Results: There was a clear thematic trajectory from diagnosis through to death and bereavement with ramifications evident for the delivery of palliative care. Unmet emotional needs and the unremitting and all-encompassing nature of care were emphasised, as was the importance of love in sustaining the carer.Conclusions: The experience of caring for a person with MND has a lasting psychological impact which may outweigh the physical and financial costs of care. This relatively unexplored area of enquiry lacks adequate models on which to base quantitative investigation. This qualitative study provides a starting point for future research.
机译：背景：尽管以谷氨酸抑制剂利鲁唑的形式引入了疾病缓解疗法，但运动神经元疾病（MND）仍然普遍致命。照顾患有MND的人面临着巨大的挑战，其中许多挑战是疾病综合体所特有的。为了使MND患者及其照顾者能够接受姑息治疗，需要了解照顾者的负担。目的：探索MND患者的照顾者和以前的照顾者的经验和看法，重点是疾病的后期阶段参与者和方法：焦点小组是通过新南威尔士州运动神经元疾病协会招募的两组前护理人员和一组现有护理人员进行的。招聘一直持续到没有新主题出现为止。结果：从诊断到死亡和丧亲之间存在明确的主题轨迹，对姑息治疗的提供效果明显。强调了未满足的情感需求和坚持不懈的包罗万象的性质，以及爱在维持照顾者方面的重要性。结论：照顾MND患者的经历具有持久的心理影响，可能会超过身体和财务上的负担护理费用。这个相对未开发的调查领域缺乏定量调查所依据的适当模型。该定性研究为将来的研究提供了起点。

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