Research Brief
Introducing the Research Brief
The Kansas Center for Rural Research Committee is excited to launch this new Research Brief series to spotlight research happening with and within rural Kansas communities. Each issue will highlight projects that aim to improve the health, healthcare delivery, and equity in rural areas. Research Briefs will feature the voices of local providers, patients, and researchers, working together to solve real-world challenges. Our goal is to share what’s being learned, celebrate efforts of rural clinics and partners and spark ideas for future collaboration.
KU faculty, staff, and partners committed to advancing rural health may be eligible to become members of a Kansas Center for Rural Health Committee and collaborate to improve care in rural communities.
Rural–Urban Autism Health Care Transition Project
Autistic adolescents and young adults (AYAs) often have ongoing physical, mental, and developmental health needs while learning to navigate adult-oriented health systems. As they grow older, they must also move from pediatric to adult health care, a process known as health care transition. This transition can be especially challenging for families in rural areas where services may be limited. To better understand these challenges, a research team led by Dr. Alice Zhang partnered with community members to conduct a mixed-methods study comparing the experiences of autistic AYAs in rural and urban communities. The survey included 180 autistic participants ages 14–25, with nearly equal representation from rural (84) and urban (96) areas. Questions focused on health care transition experiences, access to services (primary care, dental care, and mental health care), and interactions with health care providers. To improve accessibility, participants could complete the survey independently, with help from a parent or caregiver, or through parent/caregiver proxy. The team also interviewed 19 participants from rural and urban communities to learn more about their experiences with the “handoff” from pediatric to adult care and what supports they found most helpful. Together, these findings offer practical insights for rural health partners working to strengthen transition supports and autism-informed care.
Rural–Urban Autism Health Care Transition Project Findings
Transition to adult health care is progressing, but rural participants face greater barriers to accessing appropriate services.
- Transition Progress: 3% of participants had transitioned to adult health care around age 18, yet only 22.2% discussed the transition with a doctor in advance.
- Rural Barriers to Care: Rural participants reported more challenges, including fewer nearby providers (57.1% vs. 26.0%) and providers lacking autism-specific training (40.5% vs. 24.0%).
- Dental Access Disparities: Rural participants more often report dentists not accepting their insurance (46.4% vs. 12.5%), while urban participants more frequently reported not having dental insurance (33.3% vs. 3.6%).
Why these findings matter
These findings pinpoint actionable gaps in rural health care access and autism-informed care.
Next steps
Next steps include developing and testing practical, rural-friendly health care transition supports such as checklists, care navigation coaching, and telehealth consultation, while also expanding provider training in autism-informed care and addressing insurance and dental coverage barriers at the policy level.
Investigator Spotlight
Alice Zhang is an Assistant Professor in the Department of Occupational Therapy Education. Her broader research program focuses on improving access to evidence-based, family centered services for autistic individuals across the lifespan, including intervention development and implementation. Health care transition (HCT) is one area within this program, with particular attention to rural barriers and system navigation. This project is conducted in collaboration with an interdisciplinary team of clinical and community partners and includes Ph.D. students (Wafaa Alduraidi and Makenna Snyder)
contributing to study design, data collection, and analysis. She partners with autistic individuals, families, and providers to develop practical, scalable supports
Have questions about this research? Reach out!