Improving Healthcare Transition Planning and Health-Related Independence for Youth with ASD and their Families
Abstract
There is a critical need for health care transition (HCT) services and health-related independence (HRI) for youth with ASD. Existing HCT measurement tools fail to address youth and caregiver perspectives and no existing measurement tools examine HRI among youth with ASD. In Aim 1 of this study we explored HCT and HRI experiences and needs of youth with ASD and their caregivers utilizing qualitative methods. We recruited 61 caregivers and 43 young adults to participate and completed focus groups with 39 caregivers and individual interviews with 27 young adults. We identified major themes from the qualitative data including: caregiver stress, relationships, adulthood, health challenges, guardianship, financial, resources/suggestions, safety, work/school, health success, appointments, medication or illness management, transition to adult doctor, and self-care. Aim 2a of the study is currently underway. Within this aim we will utilize the themes from Aim 1, findings from previous literature, and experts in the field to develop an ASD-specific HRI outcome measure. The HRI measure and individual items will then be evaluated and revised based on finds from cognitive interviewing and full-scale pretesting.
Document Details
- Document Type
- Technical Report
- Publication Date
- Oct 01, 2015
- Accession Number
- AD1000982
Entities
People
- David Q. Beversdorf
- Greg Petroski
- Janet Farmer
- Michelle Teti
- Nancy C Cheak-Zamora
Organizations
- University of Missouri