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Parents’ understanding and motivation to take part in a randomized controlled trial in the field of adolescent mental health: A Qualitative Study

O'Keeffe, S. ORCID: 0000-0002-6713-2898, Weitkamp, K., Isaacs, D. , Target, M., Eatough, V. & Midgley, N. (2020). Parents’ understanding and motivation to take part in a randomized controlled trial in the field of adolescent mental health: A Qualitative Study. Trials, 21(1), article number 952. doi: 10.1186/s13063-020-04857-3

Abstract

Background
Little is known about why parents agree to take part in randomized controlled trials for adolescent mental health. This study aimed to investigate parents’ perspectives on participating in a trial for psychological treatment of depression. The study explored parents’ motivations, understanding of the trial and perspectives on the acceptability of the trial.

Methods
Sixty-five parents took part in this qualitative study. Their adolescent children had been randomly allocated to one of three active psychological treatments for depression as part of the IMPACT trial and were interviewed about their experiences of participating in the study. Semi-structured interviews were analysed using framework analysis.

Results
For seven of the sixty-five parents, their experience of taking part in the trial was not covered in their interview so they were excluded from the analysis. The analysis was therefore based on the data from the parents of 58 adolescents taking part in the trial. The most commonly cited motivation for taking part in the study reported by parents was a desire to help others going through similar difficulties. Parents generally reported finding trial participation acceptable, although there were aspects that some reported finding less acceptable, including randomization and the burden of research assessments. Others spoke positively about the experience of trial participation and found it enjoyable or even therapeutic. Importantly, some did not appear to have a good understanding of the trial design, including randomization and treatment allocation.

Conclusions
This study indicates that trial participation can be a positive experience for parents, yet it raises concerns about how trialists can ensure that consent is fully informed, given that some parents appeared to have a poor understanding of the trial. Future studies should seek to explore how communication with trial participants can be improved, to ensure that trial participation is fully informed. Patient and public involvement will be crucial in ensuring this communication is accessible to stakeholders.

Publication Type: Article
Additional Information: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Publisher Keywords: Randomized controlled trial; Trial participation; Parents’ perspectives; Adolescence; Depression; Qualitative
Subjects: B Philosophy. Psychology. Religion > BF Psychology
R Medicine > R Medicine (General)
R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Departments: School of Health & Psychological Sciences > Healthcare Services Research & Management
SWORD Depositor:
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