Cas 18.9; Manque de confiance en soi / Raymond RAAD

Public ISBD in DSM-5®. Cas cliniques / John W. BARNHILL Titre : Cas 18.9; Manque de confiance en soi Type de document : Texte imprimé et/ou numérique Auteurs : Raymond RAAD, Auteur ; Paul S. APPELBAUM, Auteur Année de publication : 2016 Importance : p.272-274 Langues : Français (fre) Index. décimale : SCI-A SCI-A - Classifications Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=470 in DSM-5®. Cas cliniques / John W. BARNHILL Cas 18.9; Manque de confiance en soi [Texte imprimé et/ou numérique] / Raymond RAAD, Auteur ; Paul S. APPELBAUM, Auteur . - 2016 . - p.272-274. Langues : Français (fre) Index. décimale : SCI-A SCI-A - Classifications Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=470

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Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome / Anne C. WHEELER in Journal of Autism and Developmental Disorders, 50-5 (May 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-5 (May 2020) . - p.1725-1747 Titre : Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Anne C. WHEELER, Auteur ; Amanda WYLIE, Auteur ; Melissa RASPA, Auteur ; Adrienne VILLAGOMEZ, Auteur ; Kylee MILLER, Auteur ; Anne EDWARDS, Auteur ; Margaret L. DERAMUS, Auteur ; Paul S. APPELBAUM, Auteur ; Donald B. Jr BAILEY, Auteur Article en page(s) : p.1725-1747 Langues : Anglais (eng) Mots-clés : Clinical trials  Decisional capacity  Fragile X syndrome  Informed consent Index. décimale : PER Périodiques Résumé : Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants were 152 adolescents and adults (80 males, 72 females) with FXS who completed a measure of decisional capacity and a comprehensive battery of neurocognitive and psychiatric measures. Females outperformed males on all aspects of decisional capacity. The ability to understand aspects of the clinical trial had the strongest association with the ability to appreciate and reason about the decision. Scaffolding improved understanding, suggesting researchers can take steps to improve decisional capacity and the informed consent process. En ligne : http://dx.doi.org/10.1007/s10803-019-03930-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=422 [article] Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome [Texte imprimé et/ou numérique] / Anne C. WHEELER, Auteur ; Amanda WYLIE, Auteur ; Melissa RASPA, Auteur ; Adrienne VILLAGOMEZ, Auteur ; Kylee MILLER, Auteur ; Anne EDWARDS, Auteur ; Margaret L. DERAMUS, Auteur ; Paul S. APPELBAUM, Auteur ; Donald B. Jr BAILEY, Auteur . - p.1725-1747. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-5 (May 2020) . - p.1725-1747 Mots-clés : Clinical trials  Decisional capacity  Fragile X syndrome  Informed consent Index. décimale : PER Périodiques Résumé : Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants were 152 adolescents and adults (80 males, 72 females) with FXS who completed a measure of decisional capacity and a comprehensive battery of neurocognitive and psychiatric measures. Females outperformed males on all aspects of decisional capacity. The ability to understand aspects of the clinical trial had the strongest association with the ability to appreciate and reason about the decision. Scaffolding improved understanding, suggesting researchers can take steps to improve decisional capacity and the informed consent process. En ligne : http://dx.doi.org/10.1007/s10803-019-03930-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=422

Impact of Receiving Genetic Diagnoses on Parents' Perceptions of Their Children with Autism and Intellectual Disability / Robert Klitzman ; Ekaterina Bezborodko ; Wendy K. CHUNG ; Paul S. APPELBAUM in Journal of Autism and Developmental Disorders, 55-1 (January 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-1 (January 2025) . - p.284-296 Titre : Impact of Receiving Genetic Diagnoses on Parents' Perceptions of Their Children with Autism and Intellectual Disability : Journal of Autism and Developmental Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Robert Klitzman, Auteur ; Ekaterina Bezborodko, Auteur ; Wendy K. CHUNG, Auteur ; Paul S. APPELBAUM, Auteur Article en page(s) : p.284-296 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : To assess whether genetic test results identifying the cause of a child?s autism, when accompanied by other neurodevelopmental disorders (NDD), including intellectual disability, alter how parents perceive and treat their child. 28 parents of 22 individuals with autism (mean age: 15 years), usually with other NDDs, were interviewed after receiving genetic diagnoses indicating a de novo mutation through the Simons Foundation Powering Autism Research for Knowledge study. Diagnosis of a de novo genetic variant can alter parental perceptions of offspring with autism and other NDDs. Parents often blamed their child less, saw their child as less in control of symptoms, and developed more patience, framing expectations accordingly. Parents had mixed feelings about receiving genetic diagnoses, with sadness sometimes accompanying reframed expectations. Genetic diagnoses could change views of the child among extended family members, teachers, social service agencies, insurers, and broader communities and society. Genetic testing might also reduce delays in diagnoses of autism among African American, Latino and other children. These data, the first to examine several critical aspects of how parents and others view children with autism and other NDDs after receiving genetic diagnoses, highlight vital needs for education of multiple stakeholders (including geneticists, other physicians, genetic counselors, parents, individuals with autism, social service agencies, insurers, policymakers, and the broader public), research (to include perspectives of extended family members, insurers, social service agencies and teachers) and practice (to increase recognition and awareness of the potential benefits and effects of genetic testing for such children). En ligne : https://doi.org/10.1007/s10803-023-06195-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=546 [article] Impact of Receiving Genetic Diagnoses on Parents' Perceptions of Their Children with Autism and Intellectual Disability : Journal of Autism and Developmental Disorders [Texte imprimé et/ou numérique] / Robert Klitzman, Auteur ; Ekaterina Bezborodko, Auteur ; Wendy K. CHUNG, Auteur ; Paul S. APPELBAUM, Auteur . - p.284-296. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-1 (January 2025) . - p.284-296 Index. décimale : PER Périodiques Résumé : To assess whether genetic test results identifying the cause of a child?s autism, when accompanied by other neurodevelopmental disorders (NDD), including intellectual disability, alter how parents perceive and treat their child. 28 parents of 22 individuals with autism (mean age: 15 years), usually with other NDDs, were interviewed after receiving genetic diagnoses indicating a de novo mutation through the Simons Foundation Powering Autism Research for Knowledge study. Diagnosis of a de novo genetic variant can alter parental perceptions of offspring with autism and other NDDs. Parents often blamed their child less, saw their child as less in control of symptoms, and developed more patience, framing expectations accordingly. Parents had mixed feelings about receiving genetic diagnoses, with sadness sometimes accompanying reframed expectations. Genetic diagnoses could change views of the child among extended family members, teachers, social service agencies, insurers, and broader communities and society. Genetic testing might also reduce delays in diagnoses of autism among African American, Latino and other children. These data, the first to examine several critical aspects of how parents and others view children with autism and other NDDs after receiving genetic diagnoses, highlight vital needs for education of multiple stakeholders (including geneticists, other physicians, genetic counselors, parents, individuals with autism, social service agencies, insurers, policymakers, and the broader public), research (to include perspectives of extended family members, insurers, social service agencies and teachers) and practice (to increase recognition and awareness of the potential benefits and effects of genetic testing for such children). En ligne : https://doi.org/10.1007/s10803-023-06195-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=546

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