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Journal of Autism and Developmental Disorders

Gepubliceerd in:

21-09-2019 | Original Paper

Genetic Testing Experiences Among Parents of Children with Autism Spectrum Disorder in the United States

Auteurs: Shixi Zhao, Wei-Ju Chen, Shweta U. Dhar, Tanya N. Eble, Oi-Man Kwok, Lei-Shih Chen

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 12/2019

Abstract

This study examined the experiences of Autism Spectrum Disorder (ASD) genetic testing among parents of children with ASD. A nationwide sample of 552 parents of children with ASD completed an online survey. Nearly one-quarter (22.5%) of the parents reported that their affected children had undergone ASD genetic testing. The testing utilization was associated with awareness of ASD genetic testing and whether information was received from healthcare providers. Among parents whose children with ASD were tested, 37.6% had negative experiences, which mainly due to lack of perceived testing benefits to their affected children and unpleasant testing experiences with healthcare providers. To provide better healthcare services, it is critical to ensure parents understand the purposes, benefits, and results of ASD genetic testing.

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Titel: Genetic Testing Experiences Among Parents of Children with Autism Spectrum Disorder in the United States
Auteurs: Shixi Zhao
Wei-Ju Chen
Shweta U. Dhar
Tanya N. Eble
Oi-Man Kwok
Lei-Shih Chen
Publicatiedatum: 21-09-2019
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 12/2019
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-019-04200-z

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