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Détail de l'auteur
Auteur Joanne MAHONY |
Documents disponibles écrits par cet auteur (2)
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'I'm not just a guinea pig': Academic and community perceptions of participatory autism research / Jacquiline DEN HOUTING in Autism, 25-1 (January 2021)
[article]
Titre : 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research Type de document : Texte imprimé et/ou numérique Auteurs : Jacquiline DEN HOUTING, Auteur ; Julianne HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.148-163 Langues : Anglais (eng) Mots-clés : autism co-production community engagement participatory research patient and public involvement stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437
in Autism > 25-1 (January 2021) . - p.148-163[article] 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research [Texte imprimé et/ou numérique] / Jacquiline DEN HOUTING, Auteur ; Julianne HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur . - p.148-163.
Langues : Anglais (eng)
in Autism > 25-1 (January 2021) . - p.148-163
Mots-clés : autism co-production community engagement participatory research patient and public involvement stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 ''Peas in a pod'': Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults / Rozanna LILLEY in Journal of Autism and Developmental Disorders, 53-3 (March 2023)
[article]
Titre : ''Peas in a pod'': Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults Type de document : Texte imprimé et/ou numérique Auteurs : Rozanna LILLEY, Auteur ; Wenn LAWSON, Auteur ; Gabrielle HALL, Auteur ; Joanne MAHONY, Auteur ; Hayley CLAPHAM, Auteur ; Melanie HEYWORTH, Auteur ; Samuel ARNOLD, Auteur ; Julian TROLLOR, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1146-1161 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: 'conceptualising the Autistic family', 'creating Autistic community', and 'contesting Autistic identity'. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults. En ligne : https://doi.org/10.1007/s10803-022-05667-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=500
in Journal of Autism and Developmental Disorders > 53-3 (March 2023) . - p.1146-1161[article] ''Peas in a pod'': Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults [Texte imprimé et/ou numérique] / Rozanna LILLEY, Auteur ; Wenn LAWSON, Auteur ; Gabrielle HALL, Auteur ; Joanne MAHONY, Auteur ; Hayley CLAPHAM, Auteur ; Melanie HEYWORTH, Auteur ; Samuel ARNOLD, Auteur ; Julian TROLLOR, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur . - p.1146-1161.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 53-3 (March 2023) . - p.1146-1161
Index. décimale : PER Périodiques Résumé : In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: 'conceptualising the Autistic family', 'creating Autistic community', and 'contesting Autistic identity'. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults. En ligne : https://doi.org/10.1007/s10803-022-05667-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=500