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动态目标。帕金森病康复中的目标训练

Moving goals. Goal-work in Parkinson's disease rehabilitation.

作者信息

Tonnesen Merete, Nielsen Claus Vinther, Andersen Rikke Sand

机构信息

Department of Public Health, Aarhus University, Aarhus, Denmark.

DEFACTUM, Central Danish Region, Aarhus, Denmark.

出版信息

Front Rehabil Sci. 2022 Aug 10;3:819862. doi: 10.3389/fresc.2022.819862. eCollection 2022.

Abstract

Chronic diseases often demand considerable work by patients: they must adhere to medical regimes and engage with social and embodied discontinuities. In Denmark, rehabilitees in Parkinson's disease rehabilitation talk about Parkinson's as their new job. In this article, we introduce as an optical lens to enlarge and explore the micro-social practices that concern a core practice in rehabilitation where professionals and rehabilitees set goals for the future and work toward the goals. To work with goals adds a new task to living with Parkinson's. Rehabilitation research tends to focus on the actual goal-setting meeting. Drawing on data from long-term ethnographic fieldwork on goals and their setting in Parkinson's disease rehabilitation, we show how participants in rehabilitation imagine, set, enact, review or share their rehabilitation goals, and how goals are worked with before and after the goal-setting meeting, across settings. We conceptualize these micro-social practices as goal-work, which we argue is a spatio-temporal process. The concept of goal-work emphasizes the fact that goal-setting is one event in a string of goal-related activities, and it turns our attention to the intersubjective dimensions inherent in goal-work, such as the role of relatives and how acts of imagination and acts of sharing form part of goal-work.

摘要

慢性病常常需要患者付出相当多的努力

他们必须遵守医疗制度,并应对社会和身体上的不适。在丹麦,帕金森病康复项目中的康复者将帕金森病视为他们的新工作。在本文中,我们引入 “目标工作” 这一视角,作为一个放大镜,来放大和探索微观社会行为,这些行为涉及康复中的一项核心实践,即专业人员和康复者为未来设定目标并朝着这些目标努力。为应对目标给帕金森病患者的生活增添了一项新任务。康复研究往往侧重于实际的目标设定会议。基于对帕金森病康复中目标及其设定的长期民族志田野调查数据,我们展示了康复参与者如何想象、设定、执行、回顾或分享他们的康复目标,以及在目标设定会议前后,跨场景下目标是如何被处理的。我们将这些微观社会行为概念化为 “目标工作”,我们认为这是一个时空过程。“目标工作” 这一概念强调了这样一个事实,即目标设定只是一系列与目标相关活动中的一个环节,它将我们的注意力转向目标工作中固有的主体间维度,比如亲属的角色,以及想象行为和分享行为如何成为目标工作的一部分。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b13a/9397665/fd9397929e4e/fresc-03-819862-g0001.jpg

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