Literature DB >> 26575802

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

Malou Luchtenberg1, Els Maeckelberghe1, Louise Locock2, Lesley Powell3, A A Eduard Verhagen1.   

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.

Entities:  

Keywords:  autonomy; clinical trials; helping others; personal benefit; research ethics; young people

Mesh:

Year:  2015        PMID: 26575802     DOI: 10.1080/15265161.2015.1088974

Source DB:  PubMed          Journal:  Am J Bioeth        ISSN: 1526-5161            Impact factor:   11.229


  12 in total

1.  Developing and evaluating multimedia information resources to improve engagement of children, adolescents, and their parents with trials (TRECA study): Study protocol for a series of linked randomised controlled trials.

Authors:  Jacqueline Martin-Kerry; Peter Bower; Bridget Young; Jonathan Graffy; Rebecca Sheridan; Ian Watt; Paul Baines; Catherine Stones; Jennifer Preston; Steven Higgins; Carrol Gamble; Peter Knapp
Journal:  Trials       Date:  2017-06-08       Impact factor: 2.279

2.  Understanding the child-doctor relationship in research participation: a qualitative study.

Authors:  Malou L Luchtenberg; Els L M Maeckelberghe; Louise Locock; A A Eduard Verhagen
Journal:  BMC Pediatr       Date:  2020-07-24       Impact factor: 2.125

3.  Supporting children and young people when making decisions about joining clinical trials: qualitative study to inform multimedia website development.

Authors:  Jacqueline M Martin-Kerry; Peter Knapp; Karl Atkin; Peter Bower; Ian Watt; Catherine Stones; Steven Higgins; Rebecca Sheridan; Jenny Preston; Danielle Horton Taylor; Paul Baines; Bridget Young
Journal:  BMJ Open       Date:  2019-01-09       Impact factor: 2.692

Review 4.  Researching the Experiences of Children with Cancer: Considerations for Practice.

Authors:  Jessika Boles; Sarah Daniels
Journal:  Children (Basel)       Date:  2019-08-16

Review 5.  Altruism: Scoping review of the literature and future directions for HIV cure-related research.

Authors:  Karine Dubé; Kelly E Perry; Kushagra Mathur; Megan Lo; Sogol S Javadi; Hursch Patel; Susanna Concha-Garcia; Jeff Taylor; Andy Kaytes; Lynda Dee; Danielle Campbell; John Kanazawa; David Smith; Sara Gianella; Judith D Auerbach; Parya Saberi; John A Sauceda
Journal:  J Virus Erad       Date:  2020-08-25

6.  An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research.

Authors:  Sarah J Mitchell; Anne-Marie Slowther; Jane Coad; Dena Khan; Mohini Samani; Jeremy Dale
Journal:  Palliat Med       Date:  2021-03-17       Impact factor: 4.762

7.  What do parents think of using informational videos to support recruitment for parenting trials? A qualitative study.

Authors:  Maiken Pontoppidan; Sarah Blower; Julie Nygaard Solvang; Tracey Bywater
Journal:  Trials       Date:  2021-12-04       Impact factor: 2.279

8.  Consent to research participation: understanding and motivation among German pupils.

Authors:  Jana Reetz; Gesine Richter; Christoph Borzikowsky; Christine Glinicke; Stephanie Darabaneanu; Alena Buyx
Journal:  BMC Med Ethics       Date:  2021-07-16       Impact factor: 2.652

9.  What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study.

Authors:  Suzanne Parsons; Wendy Thomson; Katharine Cresswell; Bella Starling; Janet E McDonagh
Journal:  Pediatr Rheumatol Online J       Date:  2017-07-03       Impact factor: 3.054

10.  Nutrition and physical activity intervention for families with familial hypercholesterolaemia: protocol for a pilot randomised controlled feasibility study.

Authors:  Fiona J Kinnear; Julian P Hamilton-Shield; David J Stensel; Graham Bayly; Aidan Searle; Alice E Thackray; Fiona E Lithander
Journal:  Pilot Feasibility Stud       Date:  2020-04-02
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