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'Think positively': Parkinson's disease, biomedicine, and hope in contemporary Germany

机译：“积极思考”：帕金森病，生物医药，以及当代德国的希望

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摘要

Narratives of hope shape contemporary engagements with Parkinson's disease. On the one hand, a biomedical narrative of hope promises that biomedical research will help to transform this treatable but incurable disease into a curable one in the future. On the other hand, a more individual illness narrative of hope encourages patients to influence the course of Parkinson's disease by practicing self-care and positive thinking. This article asks how these two narratives of hope interact. It bases its argument on an analysis of data from 13 focus groups conducted in Germany in 2012 and 2014 with patients with Parkinson's disease and their relatives. Participants were asked to have their say on clinical trials for advanced therapies for Parkinson's disease and, while doing so, envisioned their biosocial selves in the present and the future. Three modes of being for patients were drawn from this body of data: a users on stand-by mode, an unengaged mode, and an experimental pioneers mode. Both narratives of hope were important to all three modes, yet they were mobilized at different frequencies and also had different statuses. While the biomedical narrative of hope was deemed an important dream of the future that participants passively supported without having to make it their own, the illness narrative of hope was a truth discourse that took an imperative form: having Parkinson's disease implied the need to maintain a positive attitude.
机译：希望塑造与帕金森病的当代活动的叙述。一方面，希望的生物医学叙事承诺，生物医学研究将有助于将这种可治疗的但无法治愈的疾病转化为未来可固化的疾病。另一方面，希望通过练习自我保健和积极思考，更加个性地疾病叙事希望影响患者患者影响帕金森病的过程。本文询问了这两个叙事的希望互动。它基于2012年和2014年德国在德国的13个焦点小组与帕金森病和亲属患者分析的分析。有人要求参与者对帕金森病的先进疗法进行临床试验，同时这样做，在现在和未来的情况下设想他们的生物社会自我。从该数据体吸取患者的三种是患者：待机模式的用户，未成本模式和实验性先驱模式。希望的两个叙述对于所有三种模式都很重要，但它们在不同的频率下动员了，并且也有不同的地位。虽然希望的生物医学叙事被认为是未来的重要梦想，参与者被动地支持他们自己的疾病，但希望的疾病是一个真正的话语，占据了一个必要的形式：帕金森病隐约需要维持一个积极的态度。

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