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定位与分化:有疾病经历的人寻求成为健康服务开发者和生产者的合法身份。

Alignments and differentiations: People with illness experiences seeking legitimate positions as health service developers and producers.

作者信息

Jones Marjaana, Pietilä Ilkka

机构信息

University of Tampere, Finland.

University of Helsinki, Finland.

出版信息

Health (London). 2020 May;24(3):223-240. doi: 10.1177/1363459318800154. Epub 2018 Sep 16.

Abstract

Health policies and strategies promote the involvement of people with illness experiences in service development and production, integrating them into settings that have traditionally been domains of health professionals. In this study, we focus on the perspectives of people with personal illness experiences and explore how they justify involvement, position themselves as legitimate actors and forge collaborative relationships with health professionals. We have used discourse analysis in analysing individual interviews conducted with peer support workers and experts by experience (n = 17) who currently work in Finnish health services. The interviewees utilised discourses of empowerment, efficiency and patient-centeredness, aligning themselves with the justifications constructed by patient movements additionally to those found in current health policies. Both groups wanted to retain critical distance from professionals in order to voice criticisms of current care practices, yet they also frequently aligned themselves with professionals in order to gain legitimacy for their involvement. They adopted professional traits that moved them further from being lay participants sharing personal experiences and adopted an expert position. Although national-level policies provided backing and legitimacy for involvement, the lack of local-level guidance could hinder the practical implementation and make involvement largely dependent of professionals' discretion.

摘要

卫生政策和战略促进有疾病经历的人参与服务的开发和提供,将他们融入传统上属于卫生专业人员领域的环境中。在本研究中,我们关注有个人疾病经历者的观点,探讨他们如何为参与提供正当理由、将自己定位为合法行为者以及与卫生专业人员建立合作关系。我们运用话语分析方法,分析了对目前在芬兰卫生服务机构工作的同伴支持工作者和有经验的专家(n = 17)进行的个人访谈。受访者运用了赋权、效率和以患者为中心的话语,除了当前卫生政策中的理由外,还与患者运动构建的理由保持一致。两组人都希望与专业人员保持一定距离,以便对当前的护理实践提出批评,但他们也经常与专业人员保持一致,以便为自己的参与获得合法性。他们采用了一些专业特质,这使他们不再仅仅是分享个人经历的外行参与者,而是采用了专家立场。尽管国家层面的政策为参与提供了支持和合法性,但缺乏地方层面的指导可能会阻碍实际实施,并使参与在很大程度上依赖于专业人员的自由裁量权。

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