What do parents of children with autism expect from participation in research? A community survey about early autism studies / Sue FLETCHER-WATSON in Autism, 23-1 (January 2019)  

Public ISBD [article]  inAutism > 23-1 (January 2019) . - p.175-186 Titre : What do parents of children with autism expect from participation in research? A community survey about early autism studies Type de document : Texte imprimé et/ou numérique Auteurs : Sue FLETCHER-WATSON, Auteur ; K. LARSEN, Auteur ; E. SALOMONE, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; S. BERANOVA, Auteur ; Frédérique BONNET-BRILHAULT, Auteur ; R. C. BEDIA, Auteur ; Tony CHARMAN, Auteur ; Natasha CHERICONI, Auteur ; I. C. CONCEICAO, Auteur ; K. DAVIES, Auteur ; T. FARONI, Auteur ; Marie GOMOT, Auteur ; E. JONES, Auteur ; A. KAALE, Auteur ; Katarzyna KAPICA, Auteur ; R. KAWA, Auteur ; A. KYLLIAINEN, Auteur ; J. LEFORT-BESNARD, Auteur ; J. MALVY, Auteur ; S. M. DE DIOS, Auteur ; S. MARKOVSKA-SIMOSKA, Auteur ; I. MILLO, Auteur ; N. MIRANDA, Auteur ; G. PASCO, Auteur ; E. PISULA, Auteur ; M. RALEVA, Auteur ; Bernadette ROGE, Auteur ; Synnve SCHJØLBERG, Auteur ; P. TOMALSKI, Auteur ; A. M. VICENTE, Auteur ; N. YIRMIYA, Auteur ; Cost Essea Working GRP, Auteur Article en page(s) : p.175-186 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  development  ethics  infancy  parents  spectrum  intervention  outcomes  adults  risk  Psychology Index. décimale : PER Périodiques Résumé : Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects. En ligne : http://dx.doi.org/10.1177/1362361317728436 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=379 [article] What do parents of children with autism expect from participation in research? A community survey about early autism studies [Texte imprimé et/ou numérique] / Sue FLETCHER-WATSON, Auteur ; K. LARSEN, Auteur ; E. SALOMONE, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; S. BERANOVA, Auteur ; Frédérique BONNET-BRILHAULT, Auteur ; R. C. BEDIA, Auteur ; Tony CHARMAN, Auteur ; Natasha CHERICONI, Auteur ; I. C. CONCEICAO, Auteur ; K. DAVIES, Auteur ; T. FARONI, Auteur ; Marie GOMOT, Auteur ; E. JONES, Auteur ; A. KAALE, Auteur ; Katarzyna KAPICA, Auteur ; R. KAWA, Auteur ; A. KYLLIAINEN, Auteur ; J. LEFORT-BESNARD, Auteur ; J. MALVY, Auteur ; S. M. DE DIOS, Auteur ; S. MARKOVSKA-SIMOSKA, Auteur ; I. MILLO, Auteur ; N. MIRANDA, Auteur ; G. PASCO, Auteur ; E. PISULA, Auteur ; M. RALEVA, Auteur ; Bernadette ROGE, Auteur ; Synnve SCHJØLBERG, Auteur ; P. TOMALSKI, Auteur ; A. M. VICENTE, Auteur ; N. YIRMIYA, Auteur ; Cost Essea Working GRP, Auteur . - p.175-186. Langues : Anglais (eng) in Autism > 23-1 (January 2019) . - p.175-186 Mots-clés : autism spectrum disorder  development  ethics  infancy  parents  spectrum  intervention  outcomes  adults  risk  Psychology Index. décimale : PER Périodiques Résumé : Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects. En ligne : http://dx.doi.org/10.1177/1362361317728436 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=379

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