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“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.

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。

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