Peer Support and Research Engagement for Transition Age Youth and Young Adults with IDD

Background: Transition to adulthood is a significant and challenging time for youth, especially those with intellectual and developmental disabilities (IDD). Adolescence and young adulthood are marked by changes in social roles and expectations, daily activities and routines, and new responsibilities. People with IDD experience an additional shift in supports and services, which are often linked to successful outcomes. There is a dearth of research identifying effective supports and services for this population, and even less that reflects stakeholder-driven priorities. It is critical to empower youth and young adults with IDD to assume a strong position when identifying areas of research prioritization to improve transition outcomes. 

Proposed Solution to the Problem: One way to accomplish this is through peer support. True peer support, meaning support provided by someone with shared lived experience as a person with IDD, is infrequently utilized for this population, despite evidence that it is effective. 

Objectives: The project team’s objective is to use peer support to build capacity and identify areas of prioritization for community-engaged comparative effectiveness research (CER) with transition age youth with IDD and other key stakeholders. The team proposes to strengthen the infrastructure of its existing partnerships with people with IDD, their caregivers, and service organizations and leverage prior engagement projects using peer support to: (a) identify and prioritize areas of need and opportunity for peer support in transition research, and (b) build capacity among research teams to offer peer support for people with IDD interested in conducting and participating in research.

Activities: The team will conduct an environmental scan to identify stakeholders’ research priorities that address the use of peer support strategies and interventions in transition research for people with IDD. The environmental scan will include interviews and focus groups, and a scoping review of current resources and literature. The team will also develop an interactive online training module for stakeholders to learn to use peer support to engage people with IDD and their caregivers in all stages of the research process. The team previously developed a Peer Support Manual that translates peer support strategies into approaches for research engagement that will inform the development of the module.

Project Outcomes and Outputs: The result will be a research roadmap and action plan available in an accessible document for research teams and stakeholders. The team will integrate the new module into FYREworks, an online training platform that was developed and expanded by prior PCORI Engagement Awards (3084-CHOP/TU; EAIN-00109). These outcomes are designed to meet the needs of researchers and community partners by advancing research that addresses the immediate and future needs of transition age people with IDD. Dissemination of these products will enhance researchers’ and stakeholders’ capacity to engage in inclusive transition-focused research.

Patient Engagement and Stakeholder Plan: The team has embraced stakeholder engagement throughout this project. The core team includes employees and consultants with IDD. All products will be reviewed and revised based on feedback from people with IDD, peer support specialists, and researchers with and without IDD that specialize in IDD and transition. Finally, the advisory board consists of people with IDD, caregivers, organizational representatives, and researchers who work with this population.

Project Collaborators: Collaborators include the Institute on Disabilities and community-based organizations that serve people with IDD including Community Integration Services and JEVS Human Services. The team also will collaborate with a number of key consultants who identify as having an IDD and researchers with expertise in peer support and IDD.