ENGAGED - Medical Rehabilitation Research Center - Research Project

Modified Project Summary/Abstract Section Abstract – Research Project Despite the NIH’s $847 million investment in medical rehabilitation (MR) research, people with disabilities continue to experience significant barriers to health and participation. These barriers include environmental social determinants of health (SDoH) such as economic security, housing, transportation, societal attitudes, and negative treatment. Medical rehabilitation research has largely ignored SDoH as a target for MR intervention research and practice. Our multidisciplinary team of people with lived experience of disability, MR researchers, and community-engaged health researchers has over 3 decades of experience in conducting Community Engaged Research (CEnR) with and by disability community members aimed at improving health, healthcare, and social participation outcomes at the individual, community, and population levels. Therefore, the purpose of this study is to understand the needs and priorities of people with disabilities who experience the detrimental impact of SDoH, with the goal of promoting health and improving outcomes. It also aims to develop guidelines, resources, and educational materials for MR researchers to address these needs in collaboration with disability communities. Specifically, we will address the following 3 aims: AIM 1: Conduct a series of scoping reviews to examine the state of the science of MR intervention research on: a) improving functional activity and participation of people with disabilities that experience SDoH barriers, b) the use and levels of CEnR with disability communities within this research, c) gaps in the science and d) promising practices for future intervention research. AIM 2: From the firsthand, lived experience of people with disabilities (n= 200) and MRR stakeholders (n=40), document how SDoH issues impact their functional performance and societal participation, the extent to which MR interventions addressed these, and supports and barriers to their community engagement in MR research to design and test these interventions. Specifically, we will conduct a series of 26 listening sessions to gather qualitative data on people’s lived experiences, followed by a participatory citizen science approach to gather geocoded photographic images to document, describe, and address people with disabilities’ experiences of SDoH and health and participation outcomes using the Stanford “Our Voice” CEnR platform. AIM 3: Prioritize and develop resources to increase the participation of people with disabilities in MR intervention research using the CEnR Concerns Report Method (CRM). The identified priorities will be integrated into specific CEnR guidelines and resources to be shared and evaluated with MR researchers, disability community organizations, and policymakers within the Resource Core (RC) and Community Engagement and Outreach Cores (CC). Project Number: 1P50HD118631-01 | Fiscal Year: 2025 | NIH Institute/Center: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) | Principal Investigator: Susan Magasi | Institution: UNIVERSITY OF ILLINOIS AT CHICAGO, Chicago, IL | Award Amount: $519,170 | Activity Code: P50 | Study Section: Special Emphasis Panel[ZHD1 DSR-N (55)] View on NIH RePORTER: https://reporter.nih.gov/project-details/11158426