28 recherche sur le mot-clé 'participatory research'

'I'm not just a guinea pig': Academic and community perceptions of participatory autism research / Jacquiline DEN HOUTING in Autism, 25-1 (January 2021)  

Public ISBD [article]  inAutism > 25-1 (January 2021) . - p.148-163 Titre : 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research Type de document : texte imprimé Auteurs : Jacquiline DEN HOUTING, Auteur ; Julianne M. 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 [article] 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research [texte imprimé] / Jacquiline DEN HOUTING, Auteur ; Julianne M. 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

'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production / Gemma L. WILLIAMS in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2205-2215 Titre : 'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production Type de document : texte imprimé Auteurs : Gemma L. WILLIAMS, Auteur ; Rebecca ELLIS, Auteur ; Willow HOLLOWAY, Auteur ; Selena CAEMAWR, Auteur ; Monique CRAINE, Auteur ; Kathryn WILLIAMS, Auteur ; Aimee GRANT, Auteur Article en page(s) : p.2205-2215 Langues : Anglais (eng) Mots-clés : action research  autism  community-based participatory research  participatory action research  participatory research  qualitative research Index. décimale : PER Périodiques Résumé : This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings - involving four Autistic community leader members and three Autistic researchers - was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member 'field' notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.Lay Abstract In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other?s sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights. En ligne : https://dx.doi.org/10.1177/13623613241253014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] 'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production [texte imprimé] / Gemma L. WILLIAMS, Auteur ; Rebecca ELLIS, Auteur ; Willow HOLLOWAY, Auteur ; Selena CAEMAWR, Auteur ; Monique CRAINE, Auteur ; Kathryn WILLIAMS, Auteur ; Aimee GRANT, Auteur . - p.2205-2215. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2205-2215 Mots-clés : action research  autism  community-based participatory research  participatory action research  participatory research  qualitative research Index. décimale : PER Périodiques Résumé : This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings - involving four Autistic community leader members and three Autistic researchers - was to (1) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (2) establish a safe space and a model of accessible communication. We draw on extracts from transcripts made during meetings, member 'field' notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first community council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.Lay Abstract In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other?s sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights. En ligne : https://dx.doi.org/10.1177/13623613241253014 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

"Different but connected": Participatory action research using Photovoice to explore well-being in autistic young adults / Gary Yu Hin LAM in Autism, 24-5 (July 2020)  

Public ISBD [article]  inAutism > 24-5 (July 2020) . - p.1246-1259 Titre : "Different but connected": Participatory action research using Photovoice to explore well-being in autistic young adults Type de document : texte imprimé Auteurs : Gary Yu Hin LAM, Auteur ; Emily HOLDEN, Auteur ; Megan FITZPATRICK, Auteur ; Linda RAFFAELE MENDEZ, Auteur ; Karen BERKMAN, Auteur Article en page(s) : p.1246-1259 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  participatory research  qualitative research  quality of life  transition Index. décimale : PER Périodiques Résumé : Past research has mainly focused on autistic people's deficits and poor outcomes compared to other groups of people. Little is known about their positive life experiences, and how to support them to achieve a higher quality of life. It is important to include autistic individuals in research so that they can influence how their voices are represented in a meaningful way and how the research results will be useful to them. In this study, a university researcher collaborated with 14 autistic young adults in a post-school transition program to design and run the research, collect and analyze the data, and use the results to create a presentation to the community. Specifically, the participants took photos in daily life and discussed their ideas about what a good life means to them. Results showed that these young adults described themselves as uniquely and different, but they were eager to learn and adapt. They also valued their relationships with their families, friends, and animals around them, as well as the community at large. This research shows that autistic individuals have important perspectives to share and knowledge to contribute when they are given the opportunities to participate in different aspects of research. The findings will be useful in developing services and influencing policies that promote well-being among autistic adults. En ligne : http://dx.doi.org/10.1177/1362361319898961 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=427 [article] "Different but connected": Participatory action research using Photovoice to explore well-being in autistic young adults [texte imprimé] / Gary Yu Hin LAM, Auteur ; Emily HOLDEN, Auteur ; Megan FITZPATRICK, Auteur ; Linda RAFFAELE MENDEZ, Auteur ; Karen BERKMAN, Auteur . - p.1246-1259. Langues : Anglais (eng) in Autism > 24-5 (July 2020) . - p.1246-1259 Mots-clés : adults  autism spectrum disorders  participatory research  qualitative research  quality of life  transition Index. décimale : PER Périodiques Résumé : Past research has mainly focused on autistic people's deficits and poor outcomes compared to other groups of people. Little is known about their positive life experiences, and how to support them to achieve a higher quality of life. It is important to include autistic individuals in research so that they can influence how their voices are represented in a meaningful way and how the research results will be useful to them. In this study, a university researcher collaborated with 14 autistic young adults in a post-school transition program to design and run the research, collect and analyze the data, and use the results to create a presentation to the community. Specifically, the participants took photos in daily life and discussed their ideas about what a good life means to them. Results showed that these young adults described themselves as uniquely and different, but they were eager to learn and adapt. They also valued their relationships with their families, friends, and animals around them, as well as the community at large. This research shows that autistic individuals have important perspectives to share and knowledge to contribute when they are given the opportunities to participate in different aspects of research. The findings will be useful in developing services and influencing policies that promote well-being among autistic adults. En ligne : http://dx.doi.org/10.1177/1362361319898961 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=427

'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children / Aspasia Stacey RABBA ; Poulomee DATTA ; Emma DRESENS ; Rena WANG ; Lin CONG ; Ngoc DANG ; Gabrielle HALL ; Melanie HEYWORTH ; Wenn LAWSON ; Patricia LEE ; Rozanna LILLEY ; Emily MA ; Hau T.T. NGUYEN ; Kim-Van NGUYEN ; Phuc NGUYEN ; Chong Tze YEOW ; Elizabeth PELLICANO in Autism & Developmental Language Impairments, 8 (January-December 2023)  

Public ISBD [article]  inAutism & Developmental Language Impairments > 8 (January-December 2023) Titre : 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children Type de document : texte imprimé Auteurs : Aspasia Stacey RABBA, Auteur ; Poulomee DATTA, Auteur ; Emma DRESENS, Auteur ; Rena WANG, Auteur ; Lin CONG, Auteur ; Ngoc DANG, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Patricia LEE, Auteur ; Rozanna LILLEY, Auteur ; Emily MA, Auteur ; Hau T.T. NGUYEN, Auteur ; Kim-Van NGUYEN, Auteur ; Phuc NGUYEN, Auteur ; Chong Tze YEOW, Auteur ; Elizabeth PELLICANO, Auteur Langues : Anglais (eng) Mots-clés : Participatory research  community participation  cultural and linguistic diversity  autism  impact Index. décimale : PER Périodiques Résumé : Background and aimsParticipatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project.MethodsUsing key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study.ResultsWe found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being.ConclusionsThese findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners.ImplicationsThis study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities. En ligne : https://dx.doi.org/10.1177/23969415231210482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518 [article] 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children [texte imprimé] / Aspasia Stacey RABBA, Auteur ; Poulomee DATTA, Auteur ; Emma DRESENS, Auteur ; Rena WANG, Auteur ; Lin CONG, Auteur ; Ngoc DANG, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Patricia LEE, Auteur ; Rozanna LILLEY, Auteur ; Emily MA, Auteur ; Hau T.T. NGUYEN, Auteur ; Kim-Van NGUYEN, Auteur ; Phuc NGUYEN, Auteur ; Chong Tze YEOW, Auteur ; Elizabeth PELLICANO, Auteur. Langues : Anglais (eng) in Autism & Developmental Language Impairments > 8 (January-December 2023) Mots-clés : Participatory research  community participation  cultural and linguistic diversity  autism  impact Index. décimale : PER Périodiques Résumé : Background and aimsParticipatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project.MethodsUsing key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study.ResultsWe found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being.ConclusionsThese findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners.ImplicationsThis study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities. En ligne : https://dx.doi.org/10.1177/23969415231210482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518

Participatory autism research: Early career and established researchers' views and experiences / Hannah PICKARD in Autism, 26-1 (January 2022)  

Public ISBD [article]  inAutism > 26-1 (January 2022) . - p.75-87 Titre : Participatory autism research: Early career and established researchers' views and experiences Type de document : texte imprimé Auteurs : Hannah PICKARD, Auteur ; Elizabeth PELLICANO, Auteur ; Jacquiline DEN HOUTING, Auteur ; Laura 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 [article] Participatory autism research: Early career and established researchers' views and experiences [texte imprimé] / Hannah PICKARD, Auteur ; Elizabeth PELLICANO, Auteur ; Jacquiline DEN HOUTING, Auteur ; Laura 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)  

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‘You feel part of something bigger’: Stakeholders’ experiences of a long-term community–academic participatory research partnership / Elizabeth PELLICANO in Autism, 29-11 (November 2025)  

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Making the future together: Shaping autism research through meaningful participation / Sue FLETCHER-WATSON in Autism, 23-4 (May 2019)  

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Participatory Development and Psychometric Evaluation of the Introspective Predictive Processing Inventory: A Self-Report Measure for Autistic and Non-Autistic Adults / Marik ROOS in Autism, 30-6 (June 2026)  

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Reporting community involvement in autism research: Findings from the journal Autism / Diana Weiting TAN ; Laura CRANE ; Tori HAAR ; Melanie HEYWORTH ; Rebecca POULSEN ; Elizabeth PELLICANO in Autism, 29-2 (February 2025)  

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