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本文引用的文献

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"That Felt Like Real Engagement": Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability.“感觉就像真正的参与”：促进和维持与智障人士的包容性研究合作。
Qual Health Res. 2020 Jan;30(2):236-249. doi: 10.1177/1049732319869620. Epub 2019 Aug 30.
2
The Social and Emotional Impact of Involving Individuals With Mental Illness in the Research Process.让精神疾病患者参与研究过程的社会和情感影响。
Qual Health Res. 2019 Sep;29(11):1634-1640. doi: 10.1177/1049732319837232. Epub 2019 Apr 19.
3
Patient and public involvement mobile workshops - convenient involvement for the un-usual suspects.患者及公众参与移动工作坊——为特殊群体提供便捷参与方式
Res Involv Engagem. 2018 Oct 24;4:38. doi: 10.1186/s40900-018-0123-1. eCollection 2018.
4
Public involvement in health and social sciences research: A concept analysis.公众参与健康和社会科学研究：概念分析。
Health Expect. 2018 Dec;21(6):1183-1190. doi: 10.1111/hex.12825. Epub 2018 Aug 29.
5
Power to the people: To what extent has public involvement in applied health research achieved this?权力属于人民：公众参与应用健康研究在多大程度上做到了这一点？
Res Involv Engagem. 2016 Aug 17;2:28. doi: 10.1186/s40900-016-0042-y. eCollection 2016.
6
'You're there because you are unprofessional': patient and public involvement as liminal knowledge spaces.“你之所以在那里是因为你不专业”：患者及公众参与作为阈限知识空间
Sociol Health Illn. 2018 Mar;40(3):463-477. doi: 10.1111/1467-9566.12655. Epub 2017 Dec 27.
7
Black and minority ethnic group involvement in health and social care research: A systematic review.少数民族群体参与健康和社会保健研究：系统评价。
Health Expect. 2018 Feb;21(1):3-22. doi: 10.1111/hex.12597. Epub 2017 Aug 15.
8
The power of symbolic capital in patient and public involvement in health research.象征资本在健康研究中患者和公众参与的力量。
Health Expect. 2017 Oct;20(5):836-844. doi: 10.1111/hex.12519. Epub 2016 Nov 24.
9
Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study.这值得吗？患者及公众对其参与健康研究的影响及其评估的看法：一项基于英国的定性访谈研究。
Health Expect. 2017 Jun;20(3):519-528. doi: 10.1111/hex.12479. Epub 2016 Jun 24.
10
Situated Motives of Lay Participants in Community Collaboratives for Children's Mental Health.社区儿童心理健康合作中普通参与者的情境动机。
Qual Health Res. 2016 Feb;26(3):426-37. doi: 10.1177/1049732315570127. Epub 2015 Feb 2.

“积极、充实的生活”：参与公共及患者参与健康研究的经历与感悟

"An Active, Productive Life": Narratives of, and Through, Participation in Public and Patient Involvement in Health Research.

作者信息

Reynolds Joanna, Beresford Ruth

机构信息

Sheffield Hallam University, Sheffield, United Kingdom.

出版信息

Qual Health Res. 2020 Dec;30(14):2265-2277. doi: 10.1177/1049732320961053. Epub 2020 Oct 3.

DOI:10.1177/1049732320961053
PMID:33012242
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7649936/
Abstract

Public and patient involvement (PPI)-engaging the public in designing and delivering research-is increasingly expected in health research, reflecting recognition of the value of "lay" knowledge of illness and/or caring for informing research. Despite increased understanding of PPI experiences within the research process, little attention has been paid to the meaning of PPI in other areas of contributors' lives, and its value as a broader social practice. We conducted repeated narrative interviews with five experienced PPI contributors from the United Kingdom to explore how meaning is constructed through narratives of PPI in relation to their broader "life-worlds." Narratives were extremely varied, constructing identities and meanings around PPI in relation to family and social life, career and employment, financial status, and wider social agendas, as well as health. This emphasizes the importance of recognizing PPI as a social practice with diverse meaning and value beyond health research.

摘要

公众和患者参与（PPI）——让公众参与研究的设计和实施——在健康研究中越来越受到期待，这反映出人们认识到“外行”对疾病的了解和/或护理经验对研究具有指导价值。尽管人们对研究过程中PPI经历的理解有所增加，但很少有人关注PPI在参与者生活的其他领域中的意义，以及它作为一种更广泛社会实践的价值。我们对来自英国的五位经验丰富的PPI参与者进行了多次叙事访谈，以探讨如何通过与他们更广泛的“生活世界”相关的PPI叙事来构建意义。叙事极其多样，围绕PPI构建了与家庭和社会生活、职业与就业、财务状况、更广泛的社会议程以及健康相关的身份和意义。这强调了认识到PPI作为一种社会实践的重要性，它在健康研究之外具有多样的意义和价值。