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ORIGINAL RESEARCH article

Front. Pediatr.
Sec. Social Pediatrics
Volume 13 - 2025 | doi: 10.3389/fped.2025.1478000
This article is part of the Research Topic Interdisciplinary Approaches to Address Health Disparities for Intellectual and Developmental Disabilities from Underserved Communities View all 6 articles

MEANINGFUL INCLUSION OF INDIVIDUALS WITH IDD IN RESEARCH Opportunities for Meaningful Inclusion: Experience of Individuals with Intellectual and Developmental Disabilities with Research

Provisionally accepted
Ally Dudley Ally Dudley Tai Baker Tai Baker Canyon Hardesty Canyon Hardesty Eric J. Moody Eric J. Moody *
  • Wyoming Institute for Disabilities, University of Wyoming, Laramie, Wyoming, United States

The final, formatted version of the article will be published soon.

    Background: Individuals with intellectual and developmental disabilities (IDD) face numerous health disparities, particularly in rural communities. However, they are rarely included in the research process to address these challenges as co-researchers. Little is known about the experience of how individuals with disabilities participate as co-researchers, or the barriers they face.Objective: The current study explores the experiences of individuals with IDD as coresearchers through discussions with individuals with IDD themselves, those who support them, and disability researchers.Method: Data were collected through focus groups with individuals with IDD, individuals who support those with IDD, and disability researchers. Each group was asked about their journey through the research process, from beginning to end. Data were analyzed thematically by two independent coders.Results: While all groups viewed the inclusion of individuals with disabilities as co-researchers as valuable, many barriers still prevented this population from fully participating in the research process. Individuals with IDD viewed research positively, especially when the topics were personally relevant. However, many thought research was intimidating and wanted additional support. Support providers expressed that the people they support have lots to contribute to research and felt empowered when participating. Disability researchers discussed many barriers to include individuals with IDD as co-researchers, including limited time, resources, and inflexibility of research processes. Researchers felt they could use more experience working with individuals with disabilities as co-researchers to integrate these individuals into all aspects of the process. MEANINGFUL INCLUSION OF INDIVIDUALS WITH IDD IN RESEARCH Discussion: There is broad interest in including those with IDD as co-research, but many barriers remain. Full inclusion can be supported by developing a welcoming and accessible environment. Researchers may need institutional support and training to pursue inclusive IDD research. Asking individuals with IDD for their expertise, develop topics of research that those with IDD can relate to, and involving support providers may be helpful. Developing innovative strategies to support inclusion is needed from all groups.

    Keywords: intellectual and/or developmental disabilities (IDD), Journey mapping, research participation, co-researchers, Engaged research

    Received: 08 Aug 2024; Accepted: 13 Jan 2025.

    Copyright: © 2025 Dudley, Baker, Hardesty and Moody. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Eric J. Moody, Wyoming Institute for Disabilities, University of Wyoming, Laramie, Wyoming, United States

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.