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 including 3 focus groups with caregivers and individual interviews with 27 young adults. We identified major themes including: caregiver stress, relationships, health challenges, financial, resources, safety, work/school, health success, appointments, medication management, transition to adult doctor, and self-care. Within Aim 2a of the study we utilized 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 covers 8domains. The individual items and response options were evaluated and revised by experts in the field, caregivers and youth with ASD. Cognitive interviewing and full-scale pretesting were then conducted to examine the validity, appropriateness, and user-friendliness of the measure.
Document Details
- Document Type
- Technical Report
- Publication Date
- Oct 01, 2016
- Accession Number
- AD1031286
Entities
People
- David Q. Beversdorf
- Greg Petroski
- Janet Farmer
- Michelle Teti
- Nancy C Cheak-Zamora
Organizations
- University of Missouri System