Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part
American Journal of Bioethics 15 (11):3-13 (2015)
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 endedDOI
10.1080/15265161.2015.1088974
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Citations of this work
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Gatekeeping by Professionals in Recruitment of Pediatric Research Participants: Indeed an Undesirable Practice.Krista Tromp & Suzanne van de Vathorst - 2015 - American Journal of Bioethics 15 (11):30-32.
Empirical Data on Benefits Children Experience in Clinical Research.Mira Staphorst & Suzanne van de Vathorst - 2015 - American Journal of Bioethics 15 (11):20-21.
The Principle of the Primacy of the Human Subject and Minimal Risk in Non-Beneficial Paediatric Research.Joanna Różyńska - 2022 - Journal of Bioethical Inquiry 19 (2):273-286.
The Use of Dogmas in Pediatric Research Ethics.Martine C. de Vries - 2015 - American Journal of Bioethics 15 (11):18-19.
References found in this work
Declaration of Helsinki. Ethical Principles for Medical Research Involving Human Subjects.World Medical Association - 2009 - Jahrbuch für Wissenschaft Und Ethik 14 (1):233-238.
Misunderstanding in Clinical Research: Distinguishing Therapeutic Misconception, Therapeutic Misestimation, & Therapeutic Optimism.Sam Horng & Christine Grady - 2003 - IRB: Ethics & Human Research 25 (1):11.