Assessing Research Participants' Perceptions of their Clinical Research Experiences
Assessing Research Participants' Perceptions of their Clinical Research Experiences
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DOI：
10.1111/j.1752-8062.2011.00349.x
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发表时间：
2011-12-01
影响因子：
3.9
通讯作者：
Henderson, David K.
中科院分区：
文献类型：
--
作者：
Kost, Rhonda G.;Lee, Laura M.;Henderson, David K.
简介：参与者对他们的研究经验的看法提供了有价值的道德治疗措施，但没有有效的工具来衡量这些经验。我们进行了重点小组的研究参与者和专业人士在开发一个经过验证的instrument.Methods的第一步：研究参与者参加了12个重点小组，包括：（1）个人的疾病进行干预;（2）在自然史研究;或（3）健康志愿者。研究专业人员参加了六个独立的小组：（1）机构审查委员会成员，伦理学家和研究主题倡导者;（2）研究护士/协调员;或（3）研究者。焦点小组使用标准的methods.Results：八十五名参与者和29名专业人士在八个学术中心注册。利他主义和个人相关性的研究通常被确定的动机，经济补偿是不太常见的提及。参与者对知情同意过程感到满意，但如果没有提供测试结果或研究结果，则会感到失望。与研究团队的积极关系受到高度重视。研究专业人士担心的风险，不正当的影响，和知情constraint.Conclusions：参与者加入研究的各种复杂的原因，特别是利他主义和个人相关性。他们重视员工关系，健康收益，新知识和补偿，并期望专业精神和良好的组织。在这些见解的基础上，我们提出了具体的行动，以提高参与者的招聘，保留和满意度。《临床和运输科学》2011年;第4卷：403-413
Introduction: Participants perceptions of their research experiences provide valuable measures of ethical treatment, yet no validated instruments exist to measure these experiences. We conducted focus groups of research participants and professionals as the initial step in developing a validated instrument.Methods: Research participants enrolled in 12 focus groups, consisting of: (1) individuals with disorders undergoing interventions; (2) in natural history studies; or (3) healthy volunteers. Research professionals participated in six separate groups of: (1) institutional review board members, ethicists, and Research Subject Advocates; (2) research nurses/coordinators; or (3) investigators. Focus groups used standard methodologies.Results: Eighty-five participants and 29 professionals enrolled at eight academic centers. Altruism and personal relevance of the research were commonly identified motivators; financial compensation was less commonly mentioned. Participants were satisfied with informed consent processes but disappointed if not provided test results, or study outcomes. Positive relationships with research teams were valued highly. Research professionals were concerned about risks, undue influence, and informed consent.Conclusions: Participants join studies for varied, complex reasons, notably altruism and personal relevance. They value staff relationships, health gains, new knowledge, and compensation, and expect professionalism and good organization. On the basis of these insights, we propose specific actions to enhance participant recruitment, retention, and satisfaction. Clin Trans Sci 2011; Volume 4: 403-413