Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities / Rackeb TESFAYE in Autism, 23-8 (November 2019)  

Public ISBD [article]  inAutism > 23-8 (November 2019) . - p.1882-1896 Titre : Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities Type de document : texte imprimé Auteurs : Rackeb TESFAYE, Auteur ; Valérie COURCHESNE, Auteur ; Afiqah YUSUF, Auteur ; Tal SAVION-LEMIEUX, Auteur ; Ilina SINGH, Auteur ; Keiko SHIKAKO-THOMAS, Auteur ; Pat MIRENDA, Auteur ; Charlotte WADDELL, Auteur ; Isabel M. SMITH, Auteur ; David B. NICHOLAS, Auteur ; Peter SZATMARI, Auteur ; Teresa BENNETT, Auteur ; Eric DUKU, Auteur ; Stelios GEORGIADES, Auteur ; Connor M. KERNS, Auteur ; Tracy VAILLANCOURT, Auteur ; Anat ZAIDMAN-ZAIT, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Mayada ELSABBAGH, Auteur Article en page(s) : p.1882-1896 Langues : Anglais (eng) Mots-clés : Autism  disabilities  first-person perspective  inclusion  lived experience  participatory research Index. décimale : PER Périodiques Résumé : Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with various disabilities, which may be applicable to youth with autism spectrum disorder. Two-hundred and eighty-four articles met the inclusion criteria of our scoping review. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries, and art) expressed through four communication output modalities (language, sign language and gestures, writing, and images). A group of parents who have children with autism spectrum disorder were then presented with a synthesis of results. This parent consultation was used to build on approaches identified in the literature. Parents identified barriers that may be encountered during participant engagement and provided insights on how best to conduct first-person research with youth with autism spectrum disorder. Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth, and expert contributions. En ligne : http://dx.doi.org/10.1177/1362361319831487 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407 [article] Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities [texte imprimé] / Rackeb TESFAYE, Auteur ; Valérie COURCHESNE, Auteur ; Afiqah YUSUF, Auteur ; Tal SAVION-LEMIEUX, Auteur ; Ilina SINGH, Auteur ; Keiko SHIKAKO-THOMAS, Auteur ; Pat MIRENDA, Auteur ; Charlotte WADDELL, Auteur ; Isabel M. SMITH, Auteur ; David B. NICHOLAS, Auteur ; Peter SZATMARI, Auteur ; Teresa BENNETT, Auteur ; Eric DUKU, Auteur ; Stelios GEORGIADES, Auteur ; Connor M. KERNS, Auteur ; Tracy VAILLANCOURT, Auteur ; Anat ZAIDMAN-ZAIT, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Mayada ELSABBAGH, Auteur . - p.1882-1896. Langues : Anglais (eng) in Autism > 23-8 (November 2019) . - p.1882-1896 Mots-clés : Autism  disabilities  first-person perspective  inclusion  lived experience  participatory research Index. décimale : PER Périodiques Résumé : Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with various disabilities, which may be applicable to youth with autism spectrum disorder. Two-hundred and eighty-four articles met the inclusion criteria of our scoping review. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries, and art) expressed through four communication output modalities (language, sign language and gestures, writing, and images). A group of parents who have children with autism spectrum disorder were then presented with a synthesis of results. This parent consultation was used to build on approaches identified in the literature. Parents identified barriers that may be encountered during participant engagement and provided insights on how best to conduct first-person research with youth with autism spectrum disorder. Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth, and expert contributions. En ligne : http://dx.doi.org/10.1177/1362361319831487 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407

Community engagement and knowledge translation: Progress and challenge in autism research / Mayada ELSABBAGH in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.771-781 Titre : Community engagement and knowledge translation: Progress and challenge in autism research Type de document : texte imprimé Auteurs : Mayada ELSABBAGH, Auteur ; Afiqah YUSUF, Auteur ; Shreya PRASANNA, Auteur ; Keiko SHIKAKO-THOMAS, Auteur ; Crystal A RUFF, Auteur ; Michael G. FEHLINGS, Auteur Article en page(s) : p.771-781 Langues : Anglais (eng) Mots-clés : community needs  engagement  knowledge translation  low- and middle-income countries Index. décimale : PER Périodiques Résumé : The last decade has seen significant growth in scientific understanding and public awareness of autism. There is still a long road ahead before this awareness can be matched with parallel improvements in evidence-based practice. The process of translating evidence into community care has been hampered by the seeming disconnect between the mainstream scientific research agenda and the immediate priorities of many communities. The need for community engagement in the process of translating knowledge into impact has been recognized. However, there remains little consensus or empirical data regarding the process of such engagement and how to measure its impact. We shed light on a number of engagement models and tools, previously advocated in health research, as they apply to autism research. Furthermore, we illustrate the utility of such tools in supporting identification of knowledge gaps and priorities, using two community-based case studies. The case studies illustrate that information generated from research is indeed relevant and critical for knowledge users in the community. Simple and systematic methods can support the translation and uptake of knowledge in diverse communities, therefore enhancing engagement with research and bridging research findings with immediate community needs. En ligne : http://dx.doi.org/10.1177/1362361314546561 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] Community engagement and knowledge translation: Progress and challenge in autism research [texte imprimé] / Mayada ELSABBAGH, Auteur ; Afiqah YUSUF, Auteur ; Shreya PRASANNA, Auteur ; Keiko SHIKAKO-THOMAS, Auteur ; Crystal A RUFF, Auteur ; Michael G. FEHLINGS, Auteur . - p.771-781. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.771-781 Mots-clés : community needs  engagement  knowledge translation  low- and middle-income countries Index. décimale : PER Périodiques Résumé : The last decade has seen significant growth in scientific understanding and public awareness of autism. There is still a long road ahead before this awareness can be matched with parallel improvements in evidence-based practice. The process of translating evidence into community care has been hampered by the seeming disconnect between the mainstream scientific research agenda and the immediate priorities of many communities. The need for community engagement in the process of translating knowledge into impact has been recognized. However, there remains little consensus or empirical data regarding the process of such engagement and how to measure its impact. We shed light on a number of engagement models and tools, previously advocated in health research, as they apply to autism research. Furthermore, we illustrate the utility of such tools in supporting identification of knowledge gaps and priorities, using two community-based case studies. The case studies illustrate that information generated from research is indeed relevant and critical for knowledge users in the community. Simple and systematic methods can support the translation and uptake of knowledge in diverse communities, therefore enhancing engagement with research and bridging research findings with immediate community needs. En ligne : http://dx.doi.org/10.1177/1362361314546561 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

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