超越病人的病人身份:分析患者研究伙伴参与加拿大关节炎患者咨询委员会的叙述。

IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Journal of Health Services Research & Policy Pub Date : 2024-01-01 Epub Date: 2023-08-26 DOI:10.1177/13558196231197288
Graham G Macdonald, Jenny Leese, Alison M Hoens, Sheila Kerr, Wendy Lum, Lianne Gulka, Laura Nimmon, Linda C Li
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引用次数: 0

摘要

目的:将患者和公众的观点纳入研究工作,有可能使科学研究更加民主。本文探讨了作为关节炎患者咨询委员会的患者伙伴如何塑造关节炎患者的患者身份:方法:本文分析了 22 位受访患者研究伙伴在加拿大温哥华关节炎患者咨询委员会(APAB)中的经历:结果:参与者参与 APAB 的动机主要源于他们希望改变自己与病情的关系。APAB 是一个有生命力的集体项目,参与者在其中投入了自己的希望,既希望自己的生活是病人的生活,也希望其他患者的生活是病人的生活:我们的研究结果凸显了患者伙伴的历程是如何将看似不同的患者概念联系起来并融为一体的。一个人作为临床 "病人 "的经历转变为更广泛的公民病人概念。
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A patienthood that transcends the patient: An analysis of patient research partners' narratives of involvement in a Canadian arthritis patient advisory board.

Objectives: Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis.

Methods: An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada.

Results: Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease.

Conclusions: Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood.

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来源期刊
CiteScore
4.40
自引率
4.20%
发文量
39
期刊介绍: Journal of Health Services Research & Policy provides a unique opportunity to explore the ideas, policies and decisions shaping health services throughout the world. Edited and peer-reviewed by experts in the field and with a high academic standard and multidisciplinary approach, readers will gain a greater understanding of the current issues in healthcare policy and research. The journal"s strong international editorial advisory board also ensures that readers obtain a truly global and insightful perspective.
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