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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 Participatory autism research: Early career and established researchers' views and experiences / H. PICKARD in Autism, 26-1 (January 2022)
[article]
Titre : Participatory autism research: Early career and established researchers' views and experiences Type de document : Texte imprimé et/ou numérique Auteurs : H. PICKARD, Auteur ; E. PELLICANO, Auteur ; Jacquiline DEN HOUTING, Auteur ; L. CRANE, Auteur Article en page(s) : p.75-87 Langues : Anglais (eng) Mots-clés : autism co-production early career engagement participatory research researchers Index. décimale : PER Périodiques Résumé : 'Participatory autism research' refers to ways of involving autistic people and their allies (e.g. family members) in making decisions about research. These decisions can include what research gets done, how it gets done and how research findings are used. While there is more and more interest in participatory autism research, we know little about how researchers at different stages of their careers use this approach. To find out more, we discussed these issues with 25 researchers. Fourteen of these were at an early stage of their careers, and 11 were more senior researchers. We spoke to people in individual interviews or in groups. We then used a technique called thematic analysis to analyse our data, which involved us looking for common topics or 'themes' discussed by our participants. What did we find? Our participants told us that participatory autism research was a flexible approach, meaning that autistic people can be involved in research in many different ways. While people viewed this flexibility in a positive way, it also caused some confusion about what does or does not 'count' as participatory research. Our participants also spoke about how important it was to build relationships with those involved in their research, but they also said it could be difficult to communicate well with diverse groups of people who may not have much experience of research. Finally, our participants said it was hard to do participatory research when there was not much time, funding or support available to researchers. In this article, we discuss these findings, focusing on what needs to change to ensure that autistic people and their allies are meaningfully involved in autism research. En ligne : http://dx.doi.org/10.1177/13623613211019594 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451
in Autism > 26-1 (January 2022) . - p.75-87[article] Participatory autism research: Early career and established researchers' views and experiences [Texte imprimé et/ou numérique] / H. PICKARD, Auteur ; E. PELLICANO, Auteur ; Jacquiline DEN HOUTING, Auteur ; L. CRANE, Auteur . - p.75-87.
Langues : Anglais (eng)
in Autism > 26-1 (January 2022) . - p.75-87
Mots-clés : autism co-production early career engagement participatory research researchers Index. décimale : PER Périodiques Résumé : 'Participatory autism research' refers to ways of involving autistic people and their allies (e.g. family members) in making decisions about research. These decisions can include what research gets done, how it gets done and how research findings are used. While there is more and more interest in participatory autism research, we know little about how researchers at different stages of their careers use this approach. To find out more, we discussed these issues with 25 researchers. Fourteen of these were at an early stage of their careers, and 11 were more senior researchers. We spoke to people in individual interviews or in groups. We then used a technique called thematic analysis to analyse our data, which involved us looking for common topics or 'themes' discussed by our participants. What did we find? Our participants told us that participatory autism research was a flexible approach, meaning that autistic people can be involved in research in many different ways. While people viewed this flexibility in a positive way, it also caused some confusion about what does or does not 'count' as participatory research. Our participants also spoke about how important it was to build relationships with those involved in their research, but they also said it could be difficult to communicate well with diverse groups of people who may not have much experience of research. Finally, our participants said it was hard to do participatory research when there was not much time, funding or support available to researchers. In this article, we discuss these findings, focusing on what needs to change to ensure that autistic people and their allies are meaningfully involved in autism research. En ligne : http://dx.doi.org/10.1177/13623613211019594 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 Towards reproducible and respectful autism research: Combining open and participatory autism research practices / Hannah HOBSON in Research in Autism Spectrum Disorders, 106 (August 2023)
[article]
Titre : Towards reproducible and respectful autism research: Combining open and participatory autism research practices Type de document : Texte imprimé et/ou numérique Auteurs : Hannah HOBSON, Auteur ; Audrey LINDEN, Auteur ; Laura CRANE, Auteur ; Tamara KALANDADZE, Auteur Année de publication : 2023 Article en page(s) : 102196 Langues : Anglais (eng) Mots-clés : Autism Open science Open research Participatory research Co-production Index. décimale : PER Périodiques Résumé : Background Open research broadly refers to a set of practices that aim to increase transparency, rigor, reproducibility and inclusivity of research. Participatory research refers to incorporating the views and sharing power with the autism community to decide what research gets done, how it is done and how it is implemented. There is growing interest in both open and participatory practices in autism research. To date, however, these practices have tended to be considered separately. Method In this paper, we outline the value of both open and participatory approaches to the autism research field, highlighting key points of overlap. Results We propose three core principles underpinning open and participatory autism research: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. Conclusion There are various challenges and opportunities of adopting open and participatory principles in autism research. We hope our principles support researchers to embed these approaches more fully within their work. En ligne : https://doi.org/10.1016/j.rasd.2023.102196 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509
in Research in Autism Spectrum Disorders > 106 (August 2023) . - 102196[article] Towards reproducible and respectful autism research: Combining open and participatory autism research practices [Texte imprimé et/ou numérique] / Hannah HOBSON, Auteur ; Audrey LINDEN, Auteur ; Laura CRANE, Auteur ; Tamara KALANDADZE, Auteur . - 2023 . - 102196.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 106 (August 2023) . - 102196
Mots-clés : Autism Open science Open research Participatory research Co-production Index. décimale : PER Périodiques Résumé : Background Open research broadly refers to a set of practices that aim to increase transparency, rigor, reproducibility and inclusivity of research. Participatory research refers to incorporating the views and sharing power with the autism community to decide what research gets done, how it is done and how it is implemented. There is growing interest in both open and participatory practices in autism research. To date, however, these practices have tended to be considered separately. Method In this paper, we outline the value of both open and participatory approaches to the autism research field, highlighting key points of overlap. Results We propose three core principles underpinning open and participatory autism research: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. Conclusion There are various challenges and opportunities of adopting open and participatory principles in autism research. We hope our principles support researchers to embed these approaches more fully within their work. En ligne : https://doi.org/10.1016/j.rasd.2023.102196 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509