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阿尔茨海默病患者组织在促进公民项目中的作用:美国、德国和英国的比较

Alzheimer's Patient Organizations' Role in Enabling Citizenship Projects: A Comparison of the USA, Germany, and the UK.

作者信息

Mitra Sayani, Schicktanz Silke

机构信息

Department for Medical Ethics and History of Medicine, University Medical Center Göttingen, Göttingen, Germany.

出版信息

Front Sociol. 2020 Apr 2;5:19. doi: 10.3389/fsoc.2020.00019. eCollection 2020.

Abstract

This paper examines how Alzheimer's disease (AD) patient support organizations (POs) located in diverse healthcare regimes enable patients to claim and construct their rights as citizens. Since citizenship rights of people with AD are debated widely, it is important to recognize the role of POs in enabling people to construct citizenship identities. This paper thus examines the factors that shape the citizenship projects of the AD POs. Since collective health-related behavior changes in line with national differences, we compare the biggest AD POs in three starkly distinct healthcare regimes: the Alzheimer's Association in the US (ALZ), the Deutsche Alzheimer Gesellschaft (German Alzheimer's Association) in Germany (DAG), and Alzheimer's Society in the UK (AS), to examine how distinct health policy contexts shape their citizenship projects. Based on our website analysis of the three POs and other related secondary documents, we argue that the way each POs work toward enabling its members to claim rights and assume responsibilities depend upon the nature of healthcare funding and resource allocation for AD care. Since AD involves long-term care, the ways in which the three POs enable the people with AD to secure their care expenses set apart the nature of citizenships enactments.

摘要

本文探讨了位于不同医疗体系下的阿尔茨海默病(AD)患者支持组织(POs)如何使患者能够主张并构建其公民权利。鉴于AD患者的公民权利广受争议,认识到POs在使人们构建公民身份认同方面的作用非常重要。因此,本文考察了塑造AD患者支持组织公民项目的因素。由于与健康相关的集体行为会因国家差异而有所不同,我们比较了三种截然不同的医疗体系下规模最大的AD患者支持组织:美国的阿尔茨海默病协会(ALZ)、德国的德国阿尔茨海默病协会(DAG)以及英国的阿尔茨海默病协会(AS),以研究不同的健康政策背景如何塑造它们的公民项目。基于我们对这三个组织网站及其他相关二手文献的分析,我们认为,每个组织在促使其成员主张权利并承担责任方面所采取的方式,取决于AD护理的医疗资金性质和资源分配情况。由于AD涉及长期护理,这三个组织使AD患者确保其护理费用的方式,区分了公民身份实践的性质。

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