EMPOWER: Lived Experiences about Healthcare Transition
What's the study about?
Healthcare transition (HCT), or the process of transitioning from pediatric to adult healthcare, is a critically important process that most transition-age youth experience. Few resources and supports are available for youth and their caregivers navigating this process. We want to learn more about the things that worked and things that didn’t work for youth and for caregivers.
Who can participate?
Adults with intellectual and developmental disabilities, including autism, who are between 18 and 26 years of age and lives in the United States.
Caregivers or primary support person of youth with intellectual and developmental disabilities (IDD), including autism. The caregiver must be at least 18 years of age and they must care for youth with IDD who are between 12 and 26 years of age. The caregiver must live in the United States.
What will participants be doing?
We will be conducting individual interviews with adults with intellectual and developmental disabilities (IDD) and with caregivers of youth with IDD. The study will involve review of study materials that can be emailed to you or shipped via postal mail, completion of a brief online survey, and participation in a one-on-one interview via Zoom that will cover the following topics: 1) Healthcare transition and 2) Evaluation of healthcare transition resources. The review of study materials and the completion of the brief survey may take up to 30-40 minutes. The one-on-one interview may take between 20-30 minutes.
Why is this important?
When youth with IDD enter adulthood, many changes take place that affect the continuation of their health care. Many youth have to change doctors, go to new medical offices, and learn more about their own healthcare. We would like to learn more about individuals’ lived experiences in navigating healthcare transitions to develop resources, programs, and supports that can better prepare youth with IDD and their caregivers with healthcare transitions.