In partnership with self-advocates and caregivers, this project will identify and describe the healthcare transition readiness of racially/ethnically minoritized youth with intellectual and developmental disabilities (IDD) and their caregivers. The overall goal of this project is to identify the gaps in knowledge and skills about the healthcare transition of minoritized youth with IDD and their caregivers. This project will focus on the health and function outcome domain.
The objectives are 1) to assemble a community advisory board comprised of self-advocates (youth with IDD), caregivers, and providers to inform the study procedures, interpretations, and dissemination, 2) to identify and describe the healthcare transition readiness
of racially/ethnically minoritized youth with IDD and their caregivers, 3) to characterize person-centered outcomes prioritized by youth with IDD and their caregivers, and 4) evaluate the utility of healthcare transition readiness resources.
Anticipated outcomes include 1) there will be critical gaps in knowledge and skills about healthcare transition readiness among youth with IDD and their caregivers, 2) we will identify priorities on person-centered outcomes for youth with IDD and their caregivers, and 3) resources will be found useful but inadequate in fully supporting healthcare transition readiness
among racially/ethnically diverse youth with IDD and their caregivers.
As part of this project, the expected products include outreach materials for service and community agencies on the healthcare transition of youth with IDD and their caregivers, recommendations on person-centered outcome measures for healthcare transition that are culturally responsive, comprehensive recommendations on the type, quality, and quantity of healthcare transition readiness resources, and peer-reviewed manuscripts.
