The burden of proof: The process of involving young people in research
The burden of proof: The process of involving young people in research
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DOI：
10.1111/hex.12870
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发表时间：
2019-06-01
影响因子：
3.2
通讯作者：
Rapley, Tim
中科院分区：
文献类型：
--
作者：
Dovey-Pearce, Gail;Walker, Sophie;Rapley, Tim
患者和公众参与研究包括非学者与研究人员合作，从咨询任务到联合工作，以及用户主导的倡议。卫生和社会保健供资机构需要参与研究项目。目前的辩论集中在缺乏经验的“证据”来证明参与对研究质量的影响。还有人认为，研究人员和参与者之间的工作关系需要得到更充分的理解。这些领域已开始得到报告，但很少有关于青年人参与健康研究的研究。这项研究描述了成年学者和年轻人的经验，一起工作的大规模，英国健康研究计划。采用定性访谈和焦点小组方法，目的是探讨参与者对他们共同工作的过程和结果的看法。建议采取周期性、动态和灵活的办法。促成因素包括有明确的谈判和促进机制，利益攸关方对“可能的艺术”有远见，以及最重要的是有面对面工作的机会。需要的是继续讨论与青年人合作的挑战和好处，因为青年人不同于年幼的儿童和成年人，理解这项工作的价值，而青年人不必以某种方式“证明”自己。参与依赖于复杂的社会过程。这项工作支持这样的观点，即现在需要更好地理解关键过程是如何实现的，以及参与实现了什么。
Patient and public involvement in research includes non-academics working with researchers, on activities from consultative tasks, to joint working, and on user-led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical "proof" to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large-scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants' perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of "the art of the possible," and centrally, opportunities for face-to-face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow "prove" themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.