Views and experiences of youth participants in a pediatric advisory board for human subjects research
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 11–1...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Cambridge University Press
2021-01-01
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| Series: | Journal of Clinical and Translational Science |
| Subjects: | |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866121000182/type/journal_article |
| _version_ | 1811156589745274880 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Karen N. DSouza |
| collection | DOAJ |
| description |
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.
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| first_indexed | 2024-04-10T04:53:46Z |
| format | Article |
| id | doaj.art-7da29b88080a4806919e5cb67f433730 |
| institution | Directory Open Access Journal |
| issn | 2059-8661 |
| language | English |
| last_indexed | 2024-04-10T04:53:46Z |
| publishDate | 2021-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj.art-7da29b88080a4806919e5cb67f4337302023-03-09T12:31:03ZengCambridge University PressJournal of Clinical and Translational Science2059-86612021-01-01510.1017/cts.2021.18Views and experiences of youth participants in a pediatric advisory board for human subjects researchKaren N. DSouza0https://orcid.org/0000-0003-3230-5100Minerva Orellana1https://orcid.org/0000-0002-0152-7117Kirsten A. Riggan2https://orcid.org/0000-0002-0127-9555Miguel Valdez-Soto3https://orcid.org/0000-0002-8556-4010Tabetha A. Brockman4https://orcid.org/0000-0003-4008-4395Maria Guadalupe Zavala Rocha5Joyce E. Balls-Berry6https://orcid.org/0000-0003-3497-1115Young Juhn7https://orcid.org/0000-0003-2112-4240Christi A. Patten8https://orcid.org/0000-0002-7194-8160Megan A. Allyse9https://orcid.org/0000-0001-6136-9256Department of Clinical and Translational Science, Mayo Clinic Graduate School of Biomedical Science Rochester, Rochester, MN, USADepartment of Clinical and Translational Science, Mayo Clinic Graduate School of Biomedical Science Rochester, Rochester, MN, USABiomedical Ethics Research Program, Mayo Clinic, Rochester, MN, USACenter for Clinical and Translational Science, Office for Community Engagement in Research, Mayo Clinic, Rochester, MN, USACenter for Clinical and Translational Science, Office for Community Engagement in Research, Mayo Clinic, Rochester, MN, USADepartment of Elementary Education, Winona State University, Rochester, MN, USADepartment of Neurology, Washington University School of Medicine, St. Louis, MO, USADivision of Community Pediatric and Adolescent Medicine, Department of Pediatric and Adolescent Medicine, Mayo Clinic, Rochester, MN, USACenter for Clinical and Translational Science, Office for Community Engagement in Research, Mayo Clinic, Rochester, MN, USA Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN, USABiomedical Ethics Research Program, Mayo Clinic, Rochester, MN, USA Department of Obstetrics and Gynecology, Mayo Clinic, Rochester, MN, USA 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. https://www.cambridge.org/core/product/identifier/S2059866121000182/type/journal_articleCommunity advisory boardpediatric human subjects researchrecruitmentqualitative researchcommunity-engaged researchworkforce developmenteducation |
| spellingShingle | 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 Views and experiences of youth participants in a pediatric advisory board for human subjects research Journal of Clinical and Translational Science Community advisory board pediatric human subjects research recruitment qualitative research community-engaged research workforce development education |
| title | Views and experiences of youth participants in a pediatric advisory board for human subjects research |
| title_full | Views and experiences of youth participants in a pediatric advisory board for human subjects research |
| title_fullStr | Views and experiences of youth participants in a pediatric advisory board for human subjects research |
| title_full_unstemmed | Views and experiences of youth participants in a pediatric advisory board for human subjects research |
| title_short | Views and experiences of youth participants in a pediatric advisory board for human subjects research |
| title_sort | views and experiences of youth participants in a pediatric advisory board for human subjects research |
| topic | Community advisory board pediatric human subjects research recruitment qualitative research community-engaged research workforce development education |
| url | https://www.cambridge.org/core/product/identifier/S2059866121000182/type/journal_article |
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