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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)
[article]
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
in Journal of Autism and Developmental Disorders > 50-5 (May 2020) . - p.1725-1747[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 Neuroimaging research with diverse children with ASD: Impact of a social story on parent understanding and likelihood of participation / Ainsley LOSH in Research in Autism Spectrum Disorders, 71 (March 2020)
[article]
Titre : Neuroimaging research with diverse children with ASD: Impact of a social story on parent understanding and likelihood of participation Type de document : Texte imprimé et/ou numérique Auteurs : Ainsley LOSH, Auteur ; Laura Alicia ALBA, Auteur ; Jan BLACHER, Auteur ; Katherine K. M. STAVROPOULOS, Auteur Article en page(s) : p.101511 Langues : Anglais (eng) Mots-clés : Autism ASD Neuroimaging EEG Social stories Informed consent Index. décimale : PER Périodiques Résumé : Background The successful inclusion of youth with autism spectrum disorder (ASD) in neuroimaging research is imperative for advancing our understanding of the neurobiological underpinnings of ASD. In order to generate knowledge that is representative of all affected youth, it is essential to include participants who are culturally and linguistically diverse. However, these families often face barriers to participation in neuroimaging research, including distrust and limited knowledge about research, above and beyond any challenges associated with ASD (e.g., behaviors, sensory hypersensitivities). Method This study included a diverse group of Spanish- and English-speaking parents of children with ASD (N?=?79) to examine the impact of a social story on (a) their understanding of EEG study procedures and (b) their likelihood to enroll in a neuroimaging study. Results Both English- and Spanish-speaking parents who viewed a social story demonstrated better understanding of EEG procedures than parents who read a written explanation, with Spanish-speaking parents also perceiving their understanding to be better in the social story condition. Although parents who viewed a social story were not more likely to participate in neuroimaging research than parents who read a written description, they were less likely to indicate needing more information and more likely to cite their child’s specific behavior problems as the rationale for unlikelihood to participate. Conclusion These results suggest that social stories may be effective tools in the informed consent process for promoting parent understanding of neuroimaging procedures, and useful during recruitment to aid parents in determining whether their child with ASD will be successful in a neuroimaging study. En ligne : https://doi.org/10.1016/j.rasd.2020.101511 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=417
in Research in Autism Spectrum Disorders > 71 (March 2020) . - p.101511[article] Neuroimaging research with diverse children with ASD: Impact of a social story on parent understanding and likelihood of participation [Texte imprimé et/ou numérique] / Ainsley LOSH, Auteur ; Laura Alicia ALBA, Auteur ; Jan BLACHER, Auteur ; Katherine K. M. STAVROPOULOS, Auteur . - p.101511.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 71 (March 2020) . - p.101511
Mots-clés : Autism ASD Neuroimaging EEG Social stories Informed consent Index. décimale : PER Périodiques Résumé : Background The successful inclusion of youth with autism spectrum disorder (ASD) in neuroimaging research is imperative for advancing our understanding of the neurobiological underpinnings of ASD. In order to generate knowledge that is representative of all affected youth, it is essential to include participants who are culturally and linguistically diverse. However, these families often face barriers to participation in neuroimaging research, including distrust and limited knowledge about research, above and beyond any challenges associated with ASD (e.g., behaviors, sensory hypersensitivities). Method This study included a diverse group of Spanish- and English-speaking parents of children with ASD (N?=?79) to examine the impact of a social story on (a) their understanding of EEG study procedures and (b) their likelihood to enroll in a neuroimaging study. Results Both English- and Spanish-speaking parents who viewed a social story demonstrated better understanding of EEG procedures than parents who read a written explanation, with Spanish-speaking parents also perceiving their understanding to be better in the social story condition. Although parents who viewed a social story were not more likely to participate in neuroimaging research than parents who read a written description, they were less likely to indicate needing more information and more likely to cite their child’s specific behavior problems as the rationale for unlikelihood to participate. Conclusion These results suggest that social stories may be effective tools in the informed consent process for promoting parent understanding of neuroimaging procedures, and useful during recruitment to aid parents in determining whether their child with ASD will be successful in a neuroimaging study. En ligne : https://doi.org/10.1016/j.rasd.2020.101511 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=417