"About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study
"About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study
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DOI：
10.1111/hex.12883
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发表时间：
2019-08-01
影响因子：
3.2
通讯作者：
Staniszewska, Sophie
中科院分区：
文献类型：
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作者：
Boylan, Anne-Marie;Locock, Louise;Staniszewska, Sophie
背景资助者、政策制定者和研究组织越来越多地期望英国的卫生研究人员让患者和公众参与研究。有人说，它使研究“更有效、更可信，而且往往更具成本效益”。然而，这一断言的证据基础正在演变，可能是有限的。健康研究人员对让人们参与进来有何感想，他们是如何进行的，他们如何管理正式的政策言论，以及实践中发生了什么，几乎没有研究。目的探讨研究人员对患者和公众参与(PPI)的经验和认识。方法采用半结构式访谈研究方法，对36名临床和非临床卫生科研人员进行访谈，在理论领域框架下进行数据收集和专题分析。结果在分析过程中，我们形成了四个主题，概括了参与者对PPI的体验和看法。与会者对PPI表示矛盾、愤世嫉俗和热情，PPI是一种创造情绪劳动的活动，既有回报，又有负担，需要实际和社会支持。它是在受权力和激励影响的学术背景下运作的。讨论和结论研究人员对患者和公众参与的经验和态度是成功地将参与嵌入更广泛的研究文化中的关键因素。我们呼吁改变文化，支持发展有效的组织方法，以支持参与。
Background Funders, policy-makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research "more effective, more credible and often more cost efficient." However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice. Objective To explore researchers' experiences and perceptions of patient and public involvement (PPI). Methods Semi-structured interview study of 36 health researchers (both clinical and non-clinical), with data collection and thematic analysis informed by the theoretical domains framework. Results In the course of our analysis, we developed four themes that encapsulate the participants' experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives. Discussion and conclusions Researchers' experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement.