Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach

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

doi:10.1016/j.conctc.2024.101395

Involving youth with intellectual and/or developmental disabilities as collaborators in a comparative effectiveness trial: A community-engaged research approach

Contemp Clin Trials Commun. 2024 Nov 22:42:101395. doi: 10.1016/j.conctc.2024.101395. eCollection 2024 Dec.

Authors

K L Berg^{1

2}, D Herrman³, L Bernard¹, C S Shiu⁴, I Mihaila², C Arnold¹, K Acharya^{1

2}, T R G Gladstone⁵, C Danguilan¹, H Gussin², P Perez⁶, A Herrman², S Aaron⁷, A Thornton², M Gerges², C Patriarca², J J Pak¹, B W Van Voorhees²

Affiliations

¹ Department of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USA.
² Department of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL, 60612, USA.
³ Doctor of Physical Therapy Program, College of Health and Human Sciences, Northern Illinois University, DeKalb, IL, 60115, USA.
⁴ University of California Los Angeles, Los Angeles, CA, 90095, USA.
⁵ Brown University, Providence, RI, 02912, USA.
⁶ The University of Illinois Division of Specialized Care for Children, Chicago, IL, 60607, USA.
⁷ The Arc of Illinois, Mokena, IL, 60448, USA.

Abstract

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.