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自我痴呆症检测:恐惧的现象学分析。

Self-Testing for Dementia: A Phenomenological Analysis of Fear.

机构信息

Department for Thematic Studies: Technology and Social Change, Linköping University, Temahuset, 58330, Linköping, Sweden.

Department of Culture Studies, Tilburg University, PO Box 90153, 5000 LE, Tilburg, The Netherlands.

出版信息

J Med Humanit. 2024 Sep;45(3):267-281. doi: 10.1007/s10912-024-09849-x. Epub 2024 Jun 12.

Abstract

Following the growing economic relevance of mobile health (mHealth) and the increasing global prevalence of dementia, self-testing apps for dementia and mild neurocognitive disorder (MCD) have been developed and advertised. The apps' promise of a quick and easy tool has been criticized in the literature from a variety of angles, but as we argue in this article, the celebratory characterization of self-testing also stands in disbalance to the various kinds of fears that may be connected to taking the test. By drawing on Sara Ahmed's phenomenological theory on emotions and by referring to illustrative experiences from two users with a particular dementia self-testing app, we explore four dimensions of fear derived from phenomenology: performative, ontological, embodied, and temporal dimensions. We argue that fear (1) motivates one to take the self-test and to try to take control over one's health; (2) is shaped by and shapes the ways in which we make sense of ourselves and others as cognitively deficient; (3) constructs and is constructed by our differently embodied presence in the world; and that (4) testing makes a fearful future self as cognitively deficient more tangible. In outlining these different dimensions of fear, this article expands the understanding of the meaning of experiencing self-testing in comparison to the mostly quantitative literature on this topic.

摘要

随着移动医疗 (mHealth) 的经济重要性不断增长,以及痴呆症在全球的发病率不断上升,用于痴呆症和轻度认知障碍 (MCD) 自我检测的应用程序已经开发并投放市场。这些应用程序承诺提供快速简便的工具,这在文献中已经从多个角度受到了批评,但正如我们在本文中所指出的,自我检测的这种赞美描述也与测试可能带来的各种恐惧相失衡。通过借鉴萨拉·艾哈迈德 (Sara Ahmed) 的情感现象学理论,并参考来自两个使用特定痴呆症自我检测应用程序的用户的说明性经验,我们探索了源自现象学的恐惧的四个维度:表现性、本体论、具身性和时间性维度。我们认为,恐惧 (1) 激励人们进行自我检测,并试图控制自己的健康;(2) 由我们对自己和他人认知缺陷的理解方式所塑造,并影响这种理解方式;(3) 通过我们在世界上不同的具身存在来构建和被构建;而且 (4) 测试使认知缺陷的未来自我更加明显。本文通过概述这些不同的恐惧维度,扩展了对自我检测体验意义的理解,与该主题的大多数量化文献相比,这是一个补充。

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本文引用的文献

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Empowerment through health self-testing apps? Revisiting empowerment as a process.
Med Health Care Philos. 2023 Mar;26(1):143-152. doi: 10.1007/s11019-022-10132-w. Epub 2023 Jan 2.
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The Cognitive Online Self-Test Amsterdam (COST-A): Establishing norm scores in a community-dwelling population.
Alzheimers Dement (Amst). 2021 Sep 14;13(1):e12234. doi: 10.1002/dad2.12234. eCollection 2021.
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Cancer Causes Control. 2021 May;32(5):547-554. doi: 10.1007/s10552-021-01406-4. Epub 2021 Mar 4.
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Towards a decision aid for self-tests: Users' experiences in The Netherlands.
Health Expect. 2019 Oct;22(5):983-992. doi: 10.1111/hex.12903. Epub 2019 Jun 13.
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The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem.
Sci Eng Ethics. 2020 Jun;26(3):1159-1183. doi: 10.1007/s11948-019-00115-1. Epub 2019 Jun 6.
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Development of a Multidimensional Measure to Examine Fear of Dementia.
Int J Aging Hum Dev. 2019 Sep;89(2):187-205. doi: 10.1177/0091415018784737. Epub 2018 Jun 28.

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