TY - JOUR
T1 - Engagement to Identify Health Priorities of People With Intellectual and/or Developmental Disability
AU - Benevides, Teal W.
AU - Pham, Hoangmai H.
AU - Andresen, May Lynn
AU - Bahr, Madelyn R.
AU - Corey, Tim
AU - Nicholson, Joanne
AU - Faughnan, Kristen
AU - Jaremski, Jennifer E.
AU - Langer, Carolyn
AU - Siasoco, Vincent
AU - Hernandez-Hons, Alexis
AU - Shore, Stephen M.
N1 - Publisher Copyright:
© The Author(s) 2025. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
PY - 2026/4
Y1 - 2026/4
N2 - People with lived experiences are often excluded from development of solutions and decision-making related to health research and policy. To describe and demonstrate how high-quality engagement supports partner and project outcomes. The ultimate project outcome was to identify health priorities desired by people with intellectual and/or developmental disability (IDD) and the people who support achieving those priorities, including caregivers, clinicians, and payers/regulators. This capacity-building project implemented and evaluated methods of engagement of IDD self-advocates, caregivers/partners, clinicians, payers/regulators, and researchers. Our reliance on a variety of engagement approaches, but particularly graphic illustration and other visual engagement, yielded productive conversations to advance areas of priority. Partners felt satisfied with engagement and continued to participate at multiple points throughout the 2-year project. We identified nine illustrated priority health outcomes useful for research, practice, and policy change. Our engagement and priority-setting approach resulted in findings that partners found compelling personally and professionally.
AB - People with lived experiences are often excluded from development of solutions and decision-making related to health research and policy. To describe and demonstrate how high-quality engagement supports partner and project outcomes. The ultimate project outcome was to identify health priorities desired by people with intellectual and/or developmental disability (IDD) and the people who support achieving those priorities, including caregivers, clinicians, and payers/regulators. This capacity-building project implemented and evaluated methods of engagement of IDD self-advocates, caregivers/partners, clinicians, payers/regulators, and researchers. Our reliance on a variety of engagement approaches, but particularly graphic illustration and other visual engagement, yielded productive conversations to advance areas of priority. Partners felt satisfied with engagement and continued to participate at multiple points throughout the 2-year project. We identified nine illustrated priority health outcomes useful for research, practice, and policy change. Our engagement and priority-setting approach resulted in findings that partners found compelling personally and professionally.
KW - engagement
KW - graphic illustration
KW - intellectual and/or developmental disability
KW - patient-centered outcomes research
UR - https://www.scopus.com/pages/publications/105022138499
UR - https://www.scopus.com/pages/publications/105022138499#tab=citedBy
U2 - 10.1177/15394492251385448
DO - 10.1177/15394492251385448
M3 - Article
AN - SCOPUS:105022138499
SN - 1539-4492
VL - 46
SP - 222
EP - 230
JO - OTJR: Occupational Therapy Journal of Research
JF - OTJR: Occupational Therapy Journal of Research
IS - 2 Special Issue: Community-Engaged Research
ER -