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Health care transition services for youth with autism spectrum disorders: perspectives of caregivers

TitleHealth care transition services for youth with autism spectrum disorders: perspectives of caregivers
Publication TypeJournal Article
Year of Publication2016
AuthorsKuhlthau, KA, Delahaye, J, Erickson-Warfield, M, Shui, AM, Crossman, MK, van der Weerd, E

Lead Author
Karen A. Kuhlthau

Study Aims and Objectives
This paper describes the parent-reported experience of their child with Autism Spectrum Disorder’s (ASD) transition from pediatric to adult health care.

Methods- Sample, Procedure, Study Measures, Analysis The study sample included parents of adolescents (between the ages of 13 and 26) with ASD. Participating parents responded to a survey conducted in English. The parents were from one of two sites affiliated with the Autism Treatment Network or from a community sample in a third location. The survey questions asked about need, access, and obstacles to health care transition. The survey also included questions about sociodemographic and health data.

Results- Main Findings
Of the 183 parents included in the study, 55.7% had a child between the ages of 13 and 15. 87.4% of participants had children who were male and 91.1% were white. Approximately 40% of participants did not receive any form of health care transition services even though most parents reported that their child had health insurance and most parents indicated that health care transition services were desired. Common barriers to receiving transition services included lack of information about the transition process and lack of adult providers with appropriate knowledge about ASD services.

Conclusion- Summary Statement
As children grow and develop they need to access the adult health care system. This study showed a strong desire amongst parents of youth with ASD for help making the transition. Despite this desire many parents reported that they did not receive help with the transition.

PubMed ID26908471