Healthcare Transition (HCT) for Adolescents and Young Adults with Intellectual and
Developmental Disabilities in Rural Areas

Institution: University of Kansas Medical Center

Project Overview

This study examines the specific challenges that adolescents and young adults (AYAs) with autism in rural areas face during the health care transition (HCT) from pediatric to adult health care services.

The research employs a mixed-methods approach, including surveys and interviews, to gather perspectives from stakeholders on the HCT needs of rural autistic AYAs and to explore how primary care providers can better support these needs. An Advisory Board (AB) has been established to guide the study.

Initial survey results from 69 rural autistic AYAs indicate major barriers such as the scarcity of nearby providers, difficulty in finding a suitable provider, and travel time to appointments. Interviews have begun to reveal that HCT discussions are infrequent among parents, AYAs, health care providers, and school support services.

The study's early findings suggest a significant need for improved dialogue and support strategies in the HCT process for autistic AYAs in rural areas, with the potential to inform future interventions.

Project Mentors and Contributors

Spencer Hunley
Department of Psychology

Career Mentor:
Eve-lynn Nelson, PhD
Department of Pediatrics

Project Advisor:
Nancy Cheak-Zamora, PhD
Department of Health Sciences
University of Missouri, Columbia, Missouri, U.S.A

Other Team Members:
Ezra Kaiser, BA
Department of Hearing and Speech

Alyssa Witzgall
Department of Psychology
University of Kansas, Lawrence, Kansas, U.S.A.