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年轻人参与临床试验的体验:参与原因。

Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part.

机构信息

a University Medical Center GroningenS, University of Groningen.

b University of Oxford and Oxford NIHR Biomedical Research Centre.

出版信息

Am J Bioeth. 2015;15(11):3-13. doi: 10.1080/15265161.2015.1088974.

Abstract

Given the lack of knowledge about safety and efficacy of many treatments for children, pediatric clinical trials are important, but recruitment for pediatric research is difficult. Little is known about children's perspective on participating in trials. The purpose of this study was to understand the experiences and motivations of young people who took part in clinical trials. This is a qualitative interview study of 25 young people aged 10-23 who were invited to take part in clinical trials. Interviews were audio or video recorded and analyzed using framework analysis. Young peoples' motivations were both personal benefit and helping others. Both incentives appeared to be more complex than expected. We introduce the terms "network of exchange" and "intergenerational solidarity" to describe these motivations. To improve recruitment, professionals should be more open about research opportunities, provide better information, and give young people feedback after the trial has ended.

摘要

由于对许多儿科治疗方法的安全性和疗效知之甚少,儿科临床试验非常重要,但招募儿科研究对象却很困难。对于儿童对参与试验的看法,我们知之甚少。本研究的目的是了解参与临床试验的年轻人的经验和动机。这是一项对 25 名年龄在 10-23 岁之间的年轻人进行的定性访谈研究,他们受邀参加临床试验。访谈采用音频或视频记录,并使用框架分析进行分析。年轻人参与的动机既有个人获益,也有帮助他人。这两个激励因素似乎比预期的更为复杂。我们引入了“交换网络”和“代际团结”这两个术语来描述这些动机。为了提高招募效果,专业人员应该更开放地提供研究机会,提供更好的信息,并在试验结束后给年轻人反馈。

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