Social validity of Research Ethics for All: Social-behavioral research ethics education for community research partners with developmental disabilities

Ariel E Schwartz; Katherine McDonald; Research Ethics for All Consortium

doi:10.1016/j.dhjo.2024.101762

Social validity of Research Ethics for All: Social-behavioral research ethics education for community research partners with developmental disabilities

Disabil Health J. 2024 Nov 28:101762. doi: 10.1016/j.dhjo.2024.101762. Online ahead of print.

Authors

Ariel E Schwartz¹, Katherine McDonald²; Research Ethics for All Consortium

Collaborators

Research Ethics for All Consortium:
Kaitlyn Ahlers, Emily Anderson, Karla Ausderau, Jesse Corey, Brendan Durkin, Micah Fialka-Feldman, Dena Gassner, Karen Heath, Jennifer Jones, Brenna Maddox, Jacob Myers, Tia Nelis, Maria Paiewonsky, Casey Pellien, Dora Raymaker, Pamela Richmond, Benjamin C Silverman, Pamela Terrell, Ivy Tillman, Mariana Vetoulis-Acevedo

Affiliations

¹ Institute on Disability, University of New Hampshire, 10 West Edge, Durham, NH, 03824, USA. Electronic address: Ariel.schwartz@unh.edu.
² Senior Associate Dean of Research and Administration, Falk College, Syracuse University, 315-443-5313 344H White Hall, Syracuse, NY, 13244, USA. Electronic address: kemcdona@syr.edu.

PMID: 39658478
DOI: 10.1016/j.dhjo.2024.101762

Abstract

Background: Training in research ethics supports community research partners with developmental disabilities to take on additional research responsibilities. We worked with an academic-community partnership to develop an accessible research ethics training tailored to the roles of community research partners with developmental disabilities that leads to certification: Research Ethics for All.

Objective: We evaluated the social validity of the educational activities and certification process.

Methods: We shared the training via a webinar and gathered feedback from attendees using polls (138 attendees; 92 respondents). In addition, four research teams composed of academic researchers and community research partners with developmental disabilities completed Research Ethics for All. Teams provided feedback on a series of surveys as they prepared to use the training, completed each of the 5 learning units, and after completing the training. We calculated descriptive statistics and used a pragmatic content analysis approach to analyze open-ended data.

Results: Teams were satisfied with the training and felt it supported learning. They endorsed the videos and learning activities but thought videos should be shorter. 68.5% of webinar attendees felt that Research Ethics for All covers essential information in social-behavioral research ethics. Several IRBs have approved the use of Research Ethics for All.

Conclusions: Research Ethics for All is an acceptable research ethics training that may support community research partners with developmental disabilities to take on important research responsibilities in social-behavioral research.

Keywords: Community-engaged research; Developmental disability; Inclusive research; Research ethics education; Responsible conduct of research; Social validity.