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运用定性研究视角指导患者参与研究。

Using qualitative research perspectives to inform patient engagement in research.

作者信息

Phoenix Michelle, Nguyen Tram, Gentles Stephen J, VanderKaay Sandra, Cross Andrea, Nguyen Linda

机构信息

1Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON M4G 1R8 Canada.

2CanChild, Institute for Applied Health Sciences, McMaster University, 1400 Main Street West, Room 408, Hamilton, ON L8S 1C7 Canada.

出版信息

Res Involv Engagem. 2018 Jul 6;4:20. doi: 10.1186/s40900-018-0107-1. eCollection 2018.

Abstract

PLAIN ENGLISH SUMMARY

In Canada, and internationally, there is an increased demand for patient engagement in health care research. Patients are being involved throughout the research process in a variety of roles that extend beyond the traditional passive participant role. These practices, referred to collectively as 'patient engagement', have raised questions about how to engage patients in the research process. Specifically, researchers have noted a lack of theory underpinning patient engagement and are looking for guidance on how to select patients and engage patients throughout the research process. In this commentary, we draw on qualitative research perspectives to generate theoretical and methodological ideas that novice or experienced researchers can apply to facilitate patient engagement in research.

ABSTRACT

Despite the recent advancements in patient engagement in health care research, there is limited research evidence regarding the best strategies for developing and supporting research partnerships with patients and caregivers. Three particular outstanding concerns that have been reported in the literature and that we will explore in this commentary are: (i) the lack of theoretical underpinning to inform the practice of patient engagement in research; (ii) the lack of knowledge regarding how to select patients to engage in research; and (iii) the lack of clear guidance about the best methods for engaging patients in research. We draw on qualitative research perspectives to reflect on these three areas of concern and propose insights into the theory and methods that we believe are useful for engaging patients in research.

摘要

通俗易懂的总结

在加拿大及国际上,医疗保健研究中患者参与的需求日益增加。患者在整个研究过程中扮演着各种角色,其参与程度已超越了传统的被动参与者角色。这些做法统称为“患者参与”,引发了关于如何让患者参与研究过程的问题。具体而言,研究人员指出缺乏支撑患者参与的理论,并且正在寻求有关如何在整个研究过程中选择患者并让患者参与的指导。在本评论中,我们借鉴定性研究视角,提出新手或经验丰富的研究人员可用于促进患者参与研究的理论和方法思路。

摘要

尽管近期在医疗保健研究中患者参与方面取得了进展,但关于与患者及护理人员建立和支持研究伙伴关系的最佳策略的研究证据有限。文献中报道的、我们将在本评论中探讨的三个特别突出的问题是:(i)缺乏为患者参与研究的实践提供指导的理论基础;(ii)缺乏关于如何选择参与研究的患者的知识;(iii)缺乏关于让患者参与研究的最佳方法的明确指导。我们借鉴定性研究视角来思考这三个关注领域,并对我们认为对让患者参与研究有用的理论和方法提出见解。

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