Hillman Alexandra, Jones Ian Rees, Quinn Catherine, M Nelis Sharon, Clare Linda
WISERD: Wales Institute of Social & Economic Research, Data & Methods, School of Social Sciences, Cardiff University, UK.
Centre for Research in Ageing and Cognitive Health (REACH), School of Psychology, University of Exeter, UK.
Sociol Health Illn. 2018 Jun;40(5):874-891. doi: 10.1111/1467-9566.12729. Epub 2018 Apr 16.
The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.
“叙事经济”的概念最近被提出,它是一组交换关系,通过个人经历和故事讲述,促进资源获取并成为价值来源。我们运用这一概念来指导对五名痴呆症患者和四名非正式护理人员进行的18次定性访谈的分析。我们的参与者是一个现有的痴呆症倡导团体的成员,代表了患有这种疾病的人的声音。像我们的参与者一样,越来越多处于痴呆症早期阶段的人被要求讲述他们的经历,作为形成一种政治化的“集体疾病身份”的一种方式。这些访谈提供了一个机会来研究一群积极作为痴呆症患者发声并为他们代言的人。数据中出现了四个主题:成为痴呆症患者的代言人或为他们代言;个人经历强化;责任化;以及抵抗。这些主题说明了痴呆症患者参与自身身份建构的方式,并且作为痴呆症患者的代表,它们也说明了疾病叙事产生物质和象征价值的方式。