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在运动神经元病的背景下,传记性的中断、分裂和修复。

Biographical disruption, abruption and repair in the context of motor neurone disease.

机构信息

DIPEx Health Experiences Research Group, Department of Primary Health Care, University of Oxford.

出版信息

Sociol Health Illn. 2009 Nov;31(7):1043-58. doi: 10.1111/j.1467-9566.2009.01176.x. Epub 2009 Jul 29.

Abstract

Concepts of biographical disruption and repair have been widely applied to chronic illness, but not terminal illness. This paper examines the relevance of these concepts to motor neurone disease (MND), a progressive neurological condition characterised by loss of mobility, speech and ability to breathe or swallow. Survival is usually between two and five years, and some die within a few months. The condition thus lies at the boundary between chronic and terminal illness. Narrative interviews were conducted with 35 people living with MND and 11 family carers; analysis explored how people constructed their accounts as well as what they said. As well as accounts of biographical disruption, we identified a distinctive sense that the diagnosis is a 'death sentence' and life is already over, which we term 'biographical abruption'. We also found instances of biographical repair, as participants sought to make sense of their remaining life, restore normality and control, and find new meaning and identity.

摘要

传记式中断和修复的概念已被广泛应用于慢性疾病,但不适用于终末期疾病。本文探讨了这些概念与运动神经元病(MND)的相关性,MND 是一种进行性的神经疾病,其特征是运动能力、言语能力和呼吸或吞咽能力丧失。通常的存活期在两年到五年之间,有些患者在几个月内死亡。因此,这种疾病处于慢性和终末期疾病的边界。对 35 名患有 MND 的患者和 11 名家属进行了叙事访谈;分析探讨了人们如何构建自己的叙述,以及他们说了什么。除了传记式中断的叙述外,我们还发现有一种独特的感觉,即诊断是“死刑判决”,生命已经结束,我们称之为“传记式中断”。我们还发现了一些传记式修复的例子,因为参与者试图理解他们剩余的生命,恢复正常和控制,找到新的意义和身份。

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