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殊途同归:在分享疾病经历时调节身份紧张。

Being differently the same: the mediation of identity tensions in the sharing of illness experiences.

机构信息

Warwick Medical School, University of Warwick, Gibbet Hill Road, Coventry CV4 7AL, United Kingdom.

出版信息

Soc Sci Med. 2012 Feb;74(4):546-53. doi: 10.1016/j.socscimed.2011.10.036. Epub 2011 Dec 8.

Abstract

The sharing of experiences between patients has become increasingly privileged as a source of knowledge and support in contemporary healthcare. Despite this, relatively little is known about the processes whereby people's experiences become, or fail to become, valued as sources of health-related knowledge in different contexts. Through a secondary analysis of 87 interviews conducted between 2006 and 2008 in the UK with people affected by motor neurone disease (46 interviews) and Parkinson's disease (41 interviews), we explore the identity work involved in turning other people's experiences into 'experiential knowledge' that can be shared between patients. Of particular interest is how the turning of others' experiences into knowledge is presupposed by negotiating a particular type of identity tension - what, drawing on the work of Paul Ricoeur (2003) on metaphor, we refer to as 'being differently the same'. We examine the way in which people living with motor neurone disease and Parkinson's disease spoke of managing this tension as part of the process of accessing and valuing other patients' experiences, both epistemologically and emotionally. Instead of treating others' experiences as a pre-given source of knowledge, we emphasise how experience comes to be embodied and articulated through different media - bodies, speech, text, and images. Moreover, we suggest that paying closer attention to these media provides opportunities for enhancing our understanding of how people with different chronic and/or terminal illnesses use or do not use different forms of peer support - and in particular online ones - as a source of health-related experiential knowledge. Some of the implications of this are discussed in the specific context of people diagnosed with incurable neurodegenerative conditions characterised by visible physical deterioration and associated emotional distress.

摘要

患者经验分享已成为当代医疗保健中知识和支持的重要来源。尽管如此,人们对于经验如何以及为何在不同背景下成为或未能成为与健康相关知识的来源这一过程,了解甚少。通过对 2006 年至 2008 年间在英国进行的 87 次访谈(46 次访谈针对患有运动神经元疾病的人,41 次访谈针对患有帕金森病的人)的二次分析,我们探讨了将他人的经验转化为可以在患者之间共享的“经验知识”所涉及的身份构建工作。特别感兴趣的是,如何通过协商特定类型的身份紧张关系——我们借鉴保罗·利科(Paul Ricoeur)(2003 年)关于隐喻的研究,将其称为“不同而相同”——将他人的经验转化为知识。我们研究了患有运动神经元疾病和帕金森病的人在利用和重视其他患者的经验时,如何处理这种紧张关系,无论是在认识论上还是在情感上。我们不是将他人的经验视为既定的知识来源,而是强调经验如何通过不同的媒介——身体、言语、文本和图像——被体现和表达。此外,我们认为,更密切地关注这些媒介为我们提供了机会,以加深理解患有不同慢性和/或终末期疾病的人如何以及为何使用或不使用不同形式的同伴支持——特别是在线形式——作为与健康相关的经验知识的来源。在患有不可治愈的神经退行性疾病的人群的具体背景下,讨论了这一观点的一些影响,这些疾病的特征是明显的身体恶化和相关的情绪困扰。

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