Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach
Background: Practices to include youth with intellectual and/or developmental disabilities (IDD) are necessary to design and implement research that specifically meets the behavioral health needs of this population. This article describes a protocol for engaging youth with IDD as collaborators in a...
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| Format: | Article |
| Language: | English |
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Elsevier
2024-12-01
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| Series: | Contemporary Clinical Trials Communications |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S245186542400142X |
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| author | K.L. Berg D Herrman L Bernard C.S Shiu I Mihaila C Arnold K Acharya T.R.G Gladstone C Danguilan H Gussin P Perez A Herrman S Aaron A Thornton M Gerges C Patriarca J.J Pak B.W Van Voorhees |
| author_facet | K.L. Berg D Herrman L Bernard C.S Shiu I Mihaila C Arnold K Acharya T.R.G Gladstone C Danguilan H Gussin P Perez A Herrman S Aaron A Thornton M Gerges C Patriarca J.J Pak B.W Van Voorhees |
| author_sort | K.L. Berg |
| collection | DOAJ |
| description | Background: Practices to include youth with intellectual and/or developmental disabilities (IDD) are necessary to design and implement research that specifically meets the behavioral health needs of this population. This article describes a protocol for engaging youth with IDD as collaborators in a comparative effectiveness clinical trial using a community-engaged research (CEnR) approach. Methods: Our engagement protocol, guided by the Community Engaged Research (CEnR) Framework, emphasized harm avoidance, accessibility, demonstrated value, capacity bridging and co-learning, shared power and equity in decision-making, accountability and respect, and transparent communication. We involved seven youth with IDD in a Youth Advisory Committee (YAC) and four youth with IDD in a Summer Scholars program, ensuring consistent and structured engagement throughout the study. Results: Youth with IDD maintained high levels of engagement in both the YAC and Summer Scholars Program with 100 % retention across two years. Youth used multiple modalities to provide feedback on aspects of the research project, resulting in study modifications, the co-development of products, and tangible improvements in the accessibility and relevance of the study for youth with IDD. Conclusion: Researchers and clinicians seeking to engage the historically underserved population of disabled youth in clinical trial research can leverage our findings to enhance the accessibility and inclusivity of their studies. |
| format | Article |
| id | doaj-art-8f940779bebd475e8b3f1213e6c962f5 |
| institution | DOAJ |
| issn | 2451-8654 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Contemporary Clinical Trials Communications |
| spelling | doaj-art-8f940779bebd475e8b3f1213e6c962f52025-08-20T02:49:41ZengElsevierContemporary Clinical Trials Communications2451-86542024-12-014210139510.1016/j.conctc.2024.101395Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approachK.L. Berg0D Herrman1L Bernard2C.S Shiu3I Mihaila4C Arnold5K Acharya6T.R.G Gladstone7C Danguilan8H Gussin9P Perez10A Herrman11S Aaron12A Thornton13M Gerges14C Patriarca15J.J Pak16B.W Van Voorhees17Department of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USA; Department of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USA; Corresponding author. Department of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USA.Doctor of Physical Therapy Program, College of Health and Human Sciences, Northern Illinois University, DeKalb, IL, 60115, USADepartment of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USAUniversity of California Los Angeles, Los Angeles, CA, 90095, USADepartment of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USADepartment of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USADepartment of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USA; Department of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USABrown University, Providence, RI, 02912, USADepartment of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USADepartment of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USAThe University of Illinois Division of Specialized Care for Children, Chicago, IL, 60607, USADepartment of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USAThe Arc of Illinois, Mokena, IL, 60448, USADepartment of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USADepartment of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USADepartment of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USADepartment of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USADepartment of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USABackground: Practices to include youth with intellectual and/or developmental disabilities (IDD) are necessary to design and implement research that specifically meets the behavioral health needs of this population. This article describes a protocol for engaging youth with IDD as collaborators in a comparative effectiveness clinical trial using a community-engaged research (CEnR) approach. Methods: Our engagement protocol, guided by the Community Engaged Research (CEnR) Framework, emphasized harm avoidance, accessibility, demonstrated value, capacity bridging and co-learning, shared power and equity in decision-making, accountability and respect, and transparent communication. We involved seven youth with IDD in a Youth Advisory Committee (YAC) and four youth with IDD in a Summer Scholars program, ensuring consistent and structured engagement throughout the study. Results: Youth with IDD maintained high levels of engagement in both the YAC and Summer Scholars Program with 100 % retention across two years. Youth used multiple modalities to provide feedback on aspects of the research project, resulting in study modifications, the co-development of products, and tangible improvements in the accessibility and relevance of the study for youth with IDD. Conclusion: Researchers and clinicians seeking to engage the historically underserved population of disabled youth in clinical trial research can leverage our findings to enhance the accessibility and inclusivity of their studies.http://www.sciencedirect.com/science/article/pii/S245186542400142X |
| spellingShingle | K.L. Berg D Herrman L Bernard C.S Shiu I Mihaila C Arnold K Acharya T.R.G Gladstone C Danguilan H Gussin P Perez A Herrman S Aaron A Thornton M Gerges C Patriarca J.J Pak B.W Van Voorhees Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach Contemporary Clinical Trials Communications |
| title | Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach |
| title_full | Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach |
| title_fullStr | Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach |
| title_full_unstemmed | Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach |
| title_short | Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach |
| title_sort | involving youth with intellectual and or developmental disabilities as collaborators in a comparative effectiveness trial a community engaged research approach |
| url | http://www.sciencedirect.com/science/article/pii/S245186542400142X |
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