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ERIC Number: EJ1136855
Record Type: Journal
Publication Date: 2017-May
Pages: 11
Abstractor: As Provided
ISSN: ISSN-0162-3257
"Set in Stone" or "Ray of Hope": Parents' Beliefs about Cause and Prognosis after Genomic Testing of Children Diagnosed with ASD
Reiff, Marian; Bugos, Eva; Giarelli, Ellen; Bernhardt, Barbara A.; Spinner, Nancy B.; Sankar, Pamela L.; Mulchandani, Surabhi
Journal of Autism and Developmental Disorders, v47 n5 p1453-1463 May 2017
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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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A