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Journal of Autism and Developmental Disorders
Gepubliceerd in: Journal of Autism and Developmental Disorders 5/2017

22-02-2017 | Original Paper

“Set in Stone” or “Ray of Hope”: Parents’ Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD

Auteurs: Marian Reiff, Eva Bugos, Ellen Giarelli, Barbara A. Bernhardt, Nancy B. Spinner, Pamela L. Sankar, Surabhi Mulchandani

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2017

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Abstract

Despite increasing utilization of chromosomal microarray analysis (CMA) for autism spectrum disorders (ASD), limited information exists about how results influence parents’ beliefs about etiology and prognosis. We conducted in-depth interviews and surveys with 57 parents of children with ASD who received CMA results categorized as pathogenic, negative or variant of uncertain significance. Parents tended to incorporate their child’s CMA results within their existing beliefs about the etiology of ASD, regardless of CMA result. However, parents’ expectations for the future tended to differ depending on results; those who received genetic confirmation for their children’s ASD expressed a sense of concreteness, acceptance and permanence of the condition. Some parents expressed hope for future biomedical treatments as a result of genetic research.
vorige artikel Electrophysiological Endophenotypes and the Error-Related Negativity (ERN) in Autism Spectrum Disorder: A Family Study
volgende artikel A Meta-Analysis of Single-Subject Research on Behavioral Momentum to Enhance Success in Students with Autism
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Metagegevens
Titel
“Set in Stone” or “Ray of Hope”: Parents’ Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD
Auteurs
Marian Reiff
Eva Bugos
Ellen Giarelli
Barbara A. Bernhardt
Nancy B. Spinner
Pamela L. Sankar
Surabhi Mulchandani
Publicatiedatum
22-02-2017
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 5/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-017-3067-7

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