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"Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD
Journal article   Peer reviewed

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

Marian Reiff, Eva Bugos, Ellen Giarelli, Barbara A Bernhardt, Nancy B Spinner, Pamela L Sankar and Surabhi Mulchandani
Journal of autism and developmental disorders, v 47(5), pp 1453-1463
May 2017
PMID: 28229350

Abstract

Attitude to Health Autism Spectrum Disorder - genetics Autism Spectrum Disorder - psychology Child Culture Female Genomics Humans Male Microarray Analysis Parents - psychology Prognosis Qualitative Research Surveys and Questionnaires
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.

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Collaboration types
Domestic collaboration
Web of Science research areas
Psychology, Developmental
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