Parents’ Perceptions of the Usefulness of Chromosomal Microarray Analysis for Children with Autism Spectrum Disorders / Marian REIFF in Journal of Autism and Developmental Disorders, 45-10 (October 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-10 (October 2015) . - p.3262-3275 Titre : Parents’ Perceptions of the Usefulness of Chromosomal Microarray Analysis for Children with Autism Spectrum Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Marian REIFF, Auteur ; Ellen GIARELLI, Auteur ; Barbara A. BERNHARDT, Auteur ; Ebony EASLEY, Auteur ; Nancy B. SPINNER, Auteur ; Pamela L. SANKAR, Auteur ; Surabhi MULCHANDANI, Auteur Article en page(s) : p.3262-3275 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Chromosomal microarray analysis  Genomic testing  Qualitative  Perceived utility  Parent perspectives Index. décimale : PER Périodiques Résumé : Clinical guidelines recommend chromosomal microarray analysis (CMA) for all children with autism spectrum disorders (ASDs). We explored the test’s perceived usefulness among parents of children with ASD who had undergone CMA, and received a result categorized as pathogenic, variant of uncertain significance, or negative. Fifty-seven parents participated in a semi-structured telephone interview, and 50 also completed a survey. Most parents reported that CMA was helpful for their child and family. Major themes regarding perceived usefulness were: medical care, educational and behavioral interventions, causal explanation, information for family members, and advancing knowledge. Limits to utility, uncertainties and negative outcomes were also identified. Our findings highlight the importance of considering both health and non-health related utility in genomic testing. En ligne : http://dx.doi.org/10.1007/s10803-015-2489-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=267 [article] Parents’ Perceptions of the Usefulness of Chromosomal Microarray Analysis for Children with Autism Spectrum Disorders [Texte imprimé et/ou numérique] / Marian REIFF, Auteur ; Ellen GIARELLI, Auteur ; Barbara A. BERNHARDT, Auteur ; Ebony EASLEY, Auteur ; Nancy B. SPINNER, Auteur ; Pamela L. SANKAR, Auteur ; Surabhi MULCHANDANI, Auteur . - p.3262-3275. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-10 (October 2015) . - p.3262-3275 Mots-clés : Autism spectrum disorders  Chromosomal microarray analysis  Genomic testing  Qualitative  Perceived utility  Parent perspectives Index. décimale : PER Périodiques Résumé : Clinical guidelines recommend chromosomal microarray analysis (CMA) for all children with autism spectrum disorders (ASDs). We explored the test’s perceived usefulness among parents of children with ASD who had undergone CMA, and received a result categorized as pathogenic, variant of uncertain significance, or negative. Fifty-seven parents participated in a semi-structured telephone interview, and 50 also completed a survey. Most parents reported that CMA was helpful for their child and family. Major themes regarding perceived usefulness were: medical care, educational and behavioral interventions, causal explanation, information for family members, and advancing knowledge. Limits to utility, uncertainties and negative outcomes were also identified. Our findings highlight the importance of considering both health and non-health related utility in genomic testing. En ligne : http://dx.doi.org/10.1007/s10803-015-2489-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=267

“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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