Views and experiences of youth participants in a pediatric advisory board for human subjects research

Karen N. Dsouza, Minerva Orellana, Kirsten A. Riggan, Miguel Valdez-Soto, Tabetha A. Brockman, Maria Guadalupe Zavala Rocha, Joyce E. Balls-Berry, Young Juhn, Christi A. Patten, Megan A. Allyse

Research output: Contribution to journalArticlepeer-review

Abstract

Introduction: Community Advisory Boards (CABs) are typically comprised of adult community members who provide feedback on health-related, adult-focused research. Few, if any, CABs comprised of youth participants exist. In 2019, a Midwest medical center recruited a diverse group of 18 11-17-year-old community members to a Pediatric Advisory Board (PAB) to provide feedback on the recruitment and involvement of minors in research. Methods: Semi-structured interviews with n = 12 PAB members were conducted to understand their experiences and views on participating in the PAB. Parents (n = 7) were interviewed separately to assess the congruence of views on PAB membership between parents and their children. Interview transcripts were qualitatively analyzed to identify iterative themes. Results: PAB members thought the PAB addressed an unmet need of soliciting feedback from youth to develop age-appropriate study materials and to understand potential concerns of young participants. While PAB members expressed interest in the research topics presented by researchers, a few members indicated barriers to full participation, including lack of self-confidence, anxiety, and discomfort sharing opinions in a group setting. Parents supported their child's PAB participation and hoped it would help them build confidence in developing and sharing their opinions in ways that were meaningful for them, which PAB members largely reported occurring over their period of involvement. Conclusion: Findings from a novel Midwest PAB indicated benefits to PAB members. While contributing to pediatric research planning by providing feedback on recruiting youth and improving study protocols, they gained confidence in providing opinions on biomedical research and developed their scientific literacy.

Original languageEnglish
Article numbere91
JournalJournal of Clinical and Translational Science
DOIs
StateAccepted/In press - 2021

Keywords

  • Community advisory board
  • community-engaged research
  • education
  • pediatric human subjects research
  • qualitative research
  • recruitment
  • workforce development

Fingerprint

Dive into the research topics of 'Views and experiences of youth participants in a pediatric advisory board for human subjects research'. Together they form a unique fingerprint.

Cite this