Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges
Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges
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DOI：
10.1136/bmjspcare-2013-000548
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发表时间：
2015-12-01
影响因子：
2.7
通讯作者：
Kerr, Chris
中科院分区：
文献类型：
--
作者：
Froggatt, Katherine;Preston, Nancy;Kerr, Chris
目的和目标 政策和研究机构越来越多地提倡患者参与研究的设计和实施。以这种方式参与研究的个人的经历尚不清楚。本研究旨在描述人们参与支持性和姑息性护理研究中患者和公众参与 (PPI) 的经历，特别是参与对个人和更广泛的研究支持结构的好处和挑战。方法在这项定性探索性研究中，对患有癌症并参与为期 6 年的支持性和姑息性护理研究合作的个人进行了半结构化访谈。招募是通过参与研究合作的主办大学组织进行的。我们进行了主题分析，以确定他们经历中的共性和差异。调查结果 研究的 8 名参与者积极性很高，在研究中与其他志愿活动一起进行了 PPI。他们确定了许多研究和个人好处：将外行观点带入研究中、产生影响和个人收益。个人收益涉及支持、新知识和技能以及更大的信心。确定的参与挑战包括工作的情感和实际性质、语言问题以及识别所产生的差异。结论癌症诊断患者重视参与支持性和姑息治疗研究，但通过在文档中使用适当的语言来实现情感支持和良好沟通仍然存在问题。
Aims and objectives The involvement of patients in the design and conduct of research is increasingly promoted by policy and research bodies. The experiences of individuals who become involved in research in this way are not well understood. This study aims to describe the experiences of people's participation in patient and public involvement (PPI) in supportive and palliative care research, specifically with respect to the benefits and challenges of participation for the individuals and the broader research support structures.Methods In this qualitative exploratory study, semistructured interviews were undertaken with individuals who had a cancer diagnosis and were involved in a supportive and palliative care research collaborative over a period of 6 years. Recruitment was through the host university organisations involved in the research collaborative. A thematic analysis was undertaken to identify commonalities and differences across their experiences.Findings The eight participants in the study were highly motivated and undertook PPI in research alongside other voluntary activities. They identified a number of research and personal benefits: bringing a lay perspective into research, making a difference and personal gains. Personal gains concerned support, new knowledge and skills and greater confidence. The challenges to participation that were identified included the emotional and practical nature of the work, issues of language and identifying the difference made.Conclusions Involvement in supportive and palliative care research is valued by people with a cancer diagnosis, but there are ongoing issues of emotional support and good communication through the use of appropriate language in documentation.