Sarah Louise Mason, Roger Alistair Barker, Katie Andresen, Fergus Gracey, Catherine Ford
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引用次数: 0
Abstract
Although one of the most prevalent and impactful features of Huntington's disease (HD), little is known about the impact of apathy on HD caregivers, although there is evidence it affects perceptions of distress and burden. Given the importance of the caregivers, we aimed to explore the lived experience of people supporting someone with HD and associated apathy. Semi-structured interviews were conducted with 11 caregivers and analysed using reflective thematic analysis, informed by a phenomenological framework. Five overarching themes were produced: (1) What even is apathy? (2) It makes my life harder: the practical impact of apathy, (3) They haven't forgotten me, but they have forgotten that they ever loved me, (4) I'm grieving for someone who hasn't died yet, and (5) I need a safe space to say what I really feel without fear of judgement. Inter-woven between these themes were complex narratives about the unspoken nature of HD, the invisibility of caregivers who felt trapped and unheard, and the one-sided nature of loving someone with the disease. Findings are discussed in relation to theoretical frameworks of anticipatory grief and ambiguous loss, and situated within the wider literature on caregiving for people with a neurodegenerative condition.
冷漠是亨廷顿氏病（Huntington's disease，HD）最普遍、影响最大的特征之一，但人们对冷漠对 HD 护理人员的影响却知之甚少，尽管有证据表明它会影响对痛苦和负担的感知。鉴于照护者的重要性，我们旨在探究照护 HD 患者及相关冷漠症患者的生活经历。我们对 11 名护理人员进行了半结构式访谈，并在现象学框架的指导下采用反思性主题分析法对访谈内容进行了分析。共产生了五大主题：（1）冷漠到底是什么？(2）它让我的生活更加艰难：冷漠的实际影响；（3）他们并没有忘记我，但他们已经忘记了他们曾经爱过我；（4）我在为一个还没有死去的人悲伤；（5）我需要一个安全的空间来说出我的真实感受，而不用担心别人的评判。这些主题之间交织着复杂的叙述，涉及 HD 的不可言说性、照顾者的无形性（他们感到被困和无人倾听）以及爱一个患病者的片面性。研究结果将结合预期悲痛和模糊损失的理论框架进行讨论，并与更广泛的神经退行性疾病患者护理文献相结合。
期刊介绍：
Neuropsychological Rehabilitation publishes human experimental and clinical research related to rehabilitation, recovery of function, and brain plasticity. The journal is aimed at clinicians who wish to inform their practice in the light of the latest scientific research; at researchers in neurorehabilitation; and finally at researchers in cognitive neuroscience and related fields interested in the mechanisms of recovery and rehabilitation. Papers on neuropsychological assessment will be considered, and special topic reviews (2500-5000 words) addressing specific key questions in rehabilitation, recovery and brain plasticity will also be welcomed. The latter will enter a fast-track refereeing process.
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