“Set in Stone” or “Ray of Hope”: Parents’ Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD / Marian REIFF in Journal of Autism and Developmental Disorders, 47-5 (May 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-5 (May 2017) . - p.1453-1463 Titre : “Set in Stone” or “Ray of Hope”: Parents’ Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD Type de document : Texte imprimé et/ou numérique Auteurs : Marian REIFF, Auteur ; Eva BUGOS, Auteur ; Ellen GIARELLI, Auteur ; Barbara A. BERNHARDT, Auteur ; Nancy B. SPINNER, Auteur ; Pamela L. SANKAR, Auteur ; Surabhi MULCHANDANI, Auteur Article en page(s) : p.1453-1463 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Chromosomal microarray analysis  Genomic testing  Parental expectations  Causation beliefs  Genetic determinism Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1007/s10803-017-3067-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305 [article] “Set in Stone” or “Ray of Hope”: Parents’ Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD [Texte imprimé et/ou numérique] / Marian REIFF, Auteur ; Eva BUGOS, Auteur ; Ellen GIARELLI, Auteur ; Barbara A. BERNHARDT, Auteur ; Nancy B. SPINNER, Auteur ; Pamela L. SANKAR, Auteur ; Surabhi MULCHANDANI, Auteur . - p.1453-1463. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-5 (May 2017) . - p.1453-1463 Mots-clés : Autism spectrum disorders  Chromosomal microarray analysis  Genomic testing  Parental expectations  Causation beliefs  Genetic determinism Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1007/s10803-017-3067-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305

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