Attitudes of the autism community to early autism research / Sue FLETCHER-WATSON in Autism, 21-1 (January 2017)  

Public ISBD [article]  inAutism > 21-1 (January 2017) . - p.61-74 Titre : Attitudes of the autism community to early autism research Type de document : Texte imprimé et/ou numérique Auteurs : Sue FLETCHER-WATSON, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; Št?pánka BERANOVÁ, Auteur ; Frédérique BONNET-BRILHAULT, Auteur ; Ricardo CANAL-BEDIA, Auteur ; Tony CHARMAN, Auteur ; Natasha CHERICONI, Auteur ; Inês C CONCEIÇÃO, Auteur ; Kim DAVIES, Auteur ; Teresa FARRONI, Auteur ; Marie GOMOT, Auteur ; Emily JONES, Auteur ; Anett KAALE, Auteur ; Katarzyna KAPICA, Auteur ; Rafal KAWA, Auteur ; Anneli KYLLIAINEN, Auteur ; Kenneth LARSEN, Auteur ; Jeremy LEFORT-BESNARD, Auteur ; Joëlle MALVY, Auteur ; Sara DIOS MANSO DE, Auteur ; Silvana MARKOVSKA-SIMOSKA, Auteur ; Inbal MILLO, Auteur ; Natercia MIRANDA, Auteur ; Greg PASCO, Auteur ; Ewa PISULA, Auteur ; Marija RALEVA, Auteur ; Bernadette ROGE, Auteur ; Erica SALOMONE, Auteur ; Synnve SCHJØLBERG, Auteur ; Przemys?aw TOMALSKI, Auteur ; Astrid M VICENTE, Auteur ; Nurit YIRMIYA, Auteur Article en page(s) : p.61-74 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  development  ethics  infancy  public engagement Index. décimale : PER Périodiques Résumé : Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of ‘at-risk’ language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n?=?2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase ‘at-risk’ to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account. En ligne : http://dx.doi.org/10.1177/1362361315626577 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=297 [article] Attitudes of the autism community to early autism research [Texte imprimé et/ou numérique] / Sue FLETCHER-WATSON, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; Št?pánka BERANOVÁ, Auteur ; Frédérique BONNET-BRILHAULT, Auteur ; Ricardo CANAL-BEDIA, Auteur ; Tony CHARMAN, Auteur ; Natasha CHERICONI, Auteur ; Inês C CONCEIÇÃO, Auteur ; Kim DAVIES, Auteur ; Teresa FARRONI, Auteur ; Marie GOMOT, Auteur ; Emily JONES, Auteur ; Anett KAALE, Auteur ; Katarzyna KAPICA, Auteur ; Rafal KAWA, Auteur ; Anneli KYLLIAINEN, Auteur ; Kenneth LARSEN, Auteur ; Jeremy LEFORT-BESNARD, Auteur ; Joëlle MALVY, Auteur ; Sara DIOS MANSO DE, Auteur ; Silvana MARKOVSKA-SIMOSKA, Auteur ; Inbal MILLO, Auteur ; Natercia MIRANDA, Auteur ; Greg PASCO, Auteur ; Ewa PISULA, Auteur ; Marija RALEVA, Auteur ; Bernadette ROGE, Auteur ; Erica SALOMONE, Auteur ; Synnve SCHJØLBERG, Auteur ; Przemys?aw TOMALSKI, Auteur ; Astrid M VICENTE, Auteur ; Nurit YIRMIYA, Auteur . - p.61-74. Langues : Anglais (eng) in Autism > 21-1 (January 2017) . - p.61-74 Mots-clés : autism spectrum disorder  development  ethics  infancy  public engagement Index. décimale : PER Périodiques Résumé : Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of ‘at-risk’ language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n?=?2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase ‘at-risk’ to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account. En ligne : http://dx.doi.org/10.1177/1362361315626577 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=297

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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