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保持关怀的活力——与照顾者和痴呆症患者一起移动的民族志。

Keeping care fully alive - An ethnography of Moving-with carers and persons living with dementia.

机构信息

Faculty of Medicine, School of Physical and Occupational Therapy, McGill University, 3654 prom. Sir William Osler, Montreal, QC H3G 1Y5, Canada; Centre for Interdisciplinary Research in Rehabilitation of the Greater Montreal, 6363, Hudson Road, office 061 Lindsay Pavilion of the IURDPM, Montreal, QC H3S 1M9, Canada.

Faculty of Medicine, School of Physical and Occupational Therapy, McGill University, 3654 prom. Sir William Osler, Montreal, QC H3G 1Y5, Canada; Centre for Interdisciplinary Research in Rehabilitation of the Greater Montreal, 6363, Hudson Road, office 061 Lindsay Pavilion of the IURDPM, Montreal, QC H3S 1M9, Canada; Lady Davis Institute, Jewish General Hospital, 3755 Côte Ste-Catherine Road, Montreal, QC H3T 1E2, Canada.

出版信息

J Aging Stud. 2021 Jun;57:100927. doi: 10.1016/j.jaging.2021.100927. Epub 2021 Apr 8.

Abstract

Metaphors of persons living with dementia as living dead or zombies create images of soulless bodies, consuming the lives of those around them. Such metaphors also accentuate the public fear of dementia as one of the most threatening conditions that can befall persons or their loved ones. Drawing from an ethnography on the experience of carers and persons living with dementia, the sub-study described in this article focused on specific events within Moving-with-an eight sessions movement group designed to cultivate new experiences of self with others. At the end of the last session, a carer referred to her experience of Moving-with as "some good times." Her statement raised questions about what constituted those "good times" for that particular carer and how they came to be. Using a narrative-phenomenological approach that foregrounds the particularities of human interactions, we traced the course of a "good time," from its creation by all the participants in a Moving-with session to how it entered into the couple's everyday life outside the sessions. A microanalysis of those significant experiences illuminates how the improvisational actions of those involved made space for others to respond in ways not solely defined by their caregiving relationship. Dewey's philosophy on aesthetics further highlights the fully alive nature of such moments and underscores how the embodied and ethical nature of care arises in the tension between past and present. Care as an experience is, thus, never fixed. Attention to those moments contributes to the ways in which we can (re)define and enact care. In other words, tracing the creation of fully alive moments and their portrayal can contribute to keeping care, itself, fully alive.

摘要

将患有痴呆症的人与活死人或僵尸进行隐喻,会让人联想到没有灵魂的躯体,吞噬着他们周围人的生命。这些隐喻还强调了公众对痴呆症的恐惧,认为它是最具威胁的疾病之一,可能降临到个人或其亲人身上。本研究从一项关于护理人员和痴呆症患者体验的民族志研究中抽取了一个子研究,该子研究重点关注了在一个名为“Moving-with”的八次小组活动中设计的特定事件,旨在培养与他人一起的新自我体验。在最后一次小组活动结束时,一位护理人员将她在“Moving-with”中的体验描述为“美好时光”。她的陈述引发了一些问题,即这些“美好时光”对那位特定的护理人员意味着什么,以及它们是如何产生的。本研究采用叙事现象学方法,突出了人际互动的特殊性,追踪了“美好时光”的过程,从整个小组活动中参与者创造的“美好时光”,到它如何进入夫妇在小组活动之外的日常生活。对这些重要经历的微观分析阐明了参与者的即兴行动如何为他人提供了以不仅仅由他们的护理关系定义的方式做出回应的空间。杜威的美学哲学进一步强调了这些时刻的生动本质,并强调了关怀的体现和伦理本质如何在过去和现在之间的紧张关系中产生。因此,关怀作为一种体验永远不会是固定的。关注这些时刻有助于我们重新定义和实施关怀的方式。换句话说,追踪生动时刻的创造及其描绘可以有助于保持关怀本身的活力。

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