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Improving Healthcare Transition Planning and Health-Related Independence for Youth with ASD and their Families

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Technical Report,30 Sep 2014,29 Sep 2015

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University of Missouri Columbia United States

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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, resourcessuggestions, safety, workschool, 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.

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