7 recherche sur le mot-clé 'co-production'

Cadê o Kauê? Co-design and acceptability testing of a chat-story aimed at enhancing youth participation in the promotion of mental health in Brazil / Sheila Giardini MURTA ; Josimar Antônio de Alcântara MENDES ; Felipe Rodrigues SISTON ; Rafa Ribeiro Alves DE SOUZA ; Rafaela DE OLIVEIRA DA CUNHA ; Julyana ALVES FERREIRA ; Victor Hugo de Lima DE SANTOS ; Brenda Thallys Rocha SEABRA ; TALK2U ; Ilina SINGH in Journal of Child Psychology and Psychiatry, 66-5 (May 2025)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 66-5 (May 2025) . - p.697-715 Titre : Cadê o Kauê? Co-design and acceptability testing of a chat-story aimed at enhancing youth participation in the promotion of mental health in Brazil Type de document : texte imprimé Auteurs : Sheila Giardini MURTA, Auteur ; Josimar Antônio de Alcântara MENDES, Auteur ; Felipe Rodrigues SISTON, Auteur ; Rafa Ribeiro Alves DE SOUZA, Auteur ; Rafaela DE OLIVEIRA DA CUNHA, Auteur ; Julyana ALVES FERREIRA, Auteur ; Victor Hugo de Lima DE SANTOS, Auteur ; Brenda Thallys Rocha SEABRA, Auteur ; TALK2U, Auteur ; Ilina SINGH, Auteur Article en page(s) : p.697-715 Langues : Anglais (eng) Mots-clés : youth participation  video games  storytelling  digital interventions  adolescents  user-centred design  civic engagement  co-design  mental health  wellbeing  co-production  empowerment  peer support  gaming  chatbot Index. décimale : PER Périodiques Résumé : Background Adolescent mental health is vital for public health, yet many interventions fail to recognise adolescents as proactive community contributors. This paper discusses the co-design and acceptability testing of a chat-story intervention to enhance Brazilian adolescents' participation in the promotion of mental health in their peer communities. We specifically highlight the iterative process of co-creating this intervention with community stakeholders. Methods The co-design was led by researchers, a youth collaborative group, and health-tech experts. Part 1 included quantitative (n 1,768) and qualitative (n 46) studies with Brazilian adolescents aged 15 18 for priority-setting. Part 2 involved co-creation and technical production, with input from youth advisors (n 24), school staff (n 11), and policy experts (n 3). In Part 3, the chat-story was user tested (n 32). Parts 4 and 5 assessed acceptability through a qualitative study in schools (n 138) and initial efficacy during an online campaign (n 795). Results Participants aspired to support their peers' mental health in schools, both one-to-one and collectively, but felt unprepared. This informed the chat-story's goal of enhancing peer support and collective action skills. Themes identified during Part 1, such as prejudice and academic pressure, were woven into the narrative to raise awareness of the social determinants of mental health, drawing from real-life stories. In the final story, players search for their missing best friend at school, uncovering his anxiety struggles and practicing skills such as empathic listening and partnership building. A manual for teachers was collaboratively designed for use within school settings, supplementing direct-to-user online applications. Acceptability testing showed participants found the tool authentic and user-friendly. Online users perceived the tool as preparing and motivating them to offer peer support and engage in collective action. Conclusions The immersive co-creation model, enriched by input from key stakeholders, yielded a relevant and well-received intervention for Brazilian adolescents. Co-designed creative tools like chat-stories hold promise as digital mental health tools, fostering awareness, critical reflection, and inspiring adolescents to drive positive social change. En ligne : https://doi.org/10.1111/jcpp.14078 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Cadê o Kauê? Co-design and acceptability testing of a chat-story aimed at enhancing youth participation in the promotion of mental health in Brazil [texte imprimé] / Sheila Giardini MURTA, Auteur ; Josimar Antônio de Alcântara MENDES, Auteur ; Felipe Rodrigues SISTON, Auteur ; Rafa Ribeiro Alves DE SOUZA, Auteur ; Rafaela DE OLIVEIRA DA CUNHA, Auteur ; Julyana ALVES FERREIRA, Auteur ; Victor Hugo de Lima DE SANTOS, Auteur ; Brenda Thallys Rocha SEABRA, Auteur ; TALK2U, Auteur ; Ilina SINGH, Auteur . - p.697-715. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 66-5 (May 2025) . - p.697-715 Mots-clés : youth participation  video games  storytelling  digital interventions  adolescents  user-centred design  civic engagement  co-design  mental health  wellbeing  co-production  empowerment  peer support  gaming  chatbot Index. décimale : PER Périodiques Résumé : Background Adolescent mental health is vital for public health, yet many interventions fail to recognise adolescents as proactive community contributors. This paper discusses the co-design and acceptability testing of a chat-story intervention to enhance Brazilian adolescents' participation in the promotion of mental health in their peer communities. We specifically highlight the iterative process of co-creating this intervention with community stakeholders. Methods The co-design was led by researchers, a youth collaborative group, and health-tech experts. Part 1 included quantitative (n 1,768) and qualitative (n 46) studies with Brazilian adolescents aged 15 18 for priority-setting. Part 2 involved co-creation and technical production, with input from youth advisors (n 24), school staff (n 11), and policy experts (n 3). In Part 3, the chat-story was user tested (n 32). Parts 4 and 5 assessed acceptability through a qualitative study in schools (n 138) and initial efficacy during an online campaign (n 795). Results Participants aspired to support their peers' mental health in schools, both one-to-one and collectively, but felt unprepared. This informed the chat-story's goal of enhancing peer support and collective action skills. Themes identified during Part 1, such as prejudice and academic pressure, were woven into the narrative to raise awareness of the social determinants of mental health, drawing from real-life stories. In the final story, players search for their missing best friend at school, uncovering his anxiety struggles and practicing skills such as empathic listening and partnership building. A manual for teachers was collaboratively designed for use within school settings, supplementing direct-to-user online applications. Acceptability testing showed participants found the tool authentic and user-friendly. Online users perceived the tool as preparing and motivating them to offer peer support and engage in collective action. Conclusions The immersive co-creation model, enriched by input from key stakeholders, yielded a relevant and well-received intervention for Brazilian adolescents. Co-designed creative tools like chat-stories hold promise as digital mental health tools, fostering awareness, critical reflection, and inspiring adolescents to drive positive social change. En ligne : https://doi.org/10.1111/jcpp.14078 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study / Lucy BEASANT in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1540-1550 Titre : Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study Type de document : texte imprimé Auteurs : Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah N. DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur Article en page(s) : p.1540-1550 Langues : Anglais (eng) Mots-clés : autistic adults  co-production  learning disabilities  qualitative research  trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study [texte imprimé] / Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah N. DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur . - p.1540-1550. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1540-1550 Mots-clés : autistic adults  co-production  learning disabilities  qualitative research  trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

'It depends entirely on the nature of those supports': Community perceptions of the appropriateness of early support services for autistic children / Rhylee SULEK in Autism, 29-5 (May 2025)  

Public ISBD [article]  inAutism > 29-5 (May 2025) . - p.1275-1284 Titre : 'It depends entirely on the nature of those supports': Community perceptions of the appropriateness of early support services for autistic children Type de document : texte imprimé Auteurs : Rhylee SULEK, Auteur ; Chris EDWARDS, Auteur ; Ruth MONK, Auteur ; Lee PATRICK, Auteur ; Sarah PILLAR, Auteur ; Andrew J.O. WHITEHOUSE, Auteur ; Hannah WADDINGTON, Auteur Article en page(s) : p.1275-1284 Langues : Anglais (eng) Mots-clés : autism  co-production  early support services  neurodiversity  reflexive thematic analysis Index. décimale : PER Périodiques Résumé : Autistic advocates emphasise the need for neurodiversity-affirming and strengths-based approaches to support services; however, little is known about broader community perspectives regarding the appropriateness of offering early support services to autistic children. This co-designed mixed-methods study employed surveys to gather insights from 253 participants in Australia and New Zealand, including autistic adults, parents, and professionals. Participants shared views on the appropriateness of early support services for autistic children. About half of participants indicated that it was appropriate to provide early support services, while the other half indicated that it depended on the nature of those support services. Reflexive thematic analysis resulted in three overarching themes which explain these views. 'They are children first, after all' emphasises the importance of preserving childhood experiences and involving children in decision-making. 'We shouldn t be aiming to fix the child' underscores the need for support services to align with neurodiversity-affirming approaches. Finally, 'Supports are beneficial' highlights the perceived positive impact that early, individualised support services can provide for autistic children. These findings predominantly signal a shift away from medicalised models towards a neurodiversity-affirming approach across participant groups.Lay abstract We do not know much about what support services people think are okay for young autistic children. This study was a survey of 253 people. We asked autistic adults, parents, and professionals from Australia and New Zealand whether they thought it was okay to provide support services to autistic children. About half the people who shared their thoughts said it was okay to provide support services to autistic children and the other half said it depended on what the support service was like. They had three main ideas about whether support services were okay or not. The first one is that we should remember that these autistic children are children first, so we need to keep their childhood experiences in mind and let them have a say in decisions. The second is that we should not try to 'fix' the child, but instead, use supports that respect and understand the unique ways the child thinks. The final idea is that early, personalised help is good for autistic children and can make a positive difference in their lives. This study suggests that we should focus on what each child needs, think about how children can join in, and provide help in ways that respect autistic children. En ligne : https://dx.doi.org/10.1177/13623613241302372 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555 [article] 'It depends entirely on the nature of those supports': Community perceptions of the appropriateness of early support services for autistic children [texte imprimé] / Rhylee SULEK, Auteur ; Chris EDWARDS, Auteur ; Ruth MONK, Auteur ; Lee PATRICK, Auteur ; Sarah PILLAR, Auteur ; Andrew J.O. WHITEHOUSE, Auteur ; Hannah WADDINGTON, Auteur . - p.1275-1284. Langues : Anglais (eng) in Autism > 29-5 (May 2025) . - p.1275-1284 Mots-clés : autism  co-production  early support services  neurodiversity  reflexive thematic analysis Index. décimale : PER Périodiques Résumé : Autistic advocates emphasise the need for neurodiversity-affirming and strengths-based approaches to support services; however, little is known about broader community perspectives regarding the appropriateness of offering early support services to autistic children. This co-designed mixed-methods study employed surveys to gather insights from 253 participants in Australia and New Zealand, including autistic adults, parents, and professionals. Participants shared views on the appropriateness of early support services for autistic children. About half of participants indicated that it was appropriate to provide early support services, while the other half indicated that it depended on the nature of those support services. Reflexive thematic analysis resulted in three overarching themes which explain these views. 'They are children first, after all' emphasises the importance of preserving childhood experiences and involving children in decision-making. 'We shouldn t be aiming to fix the child' underscores the need for support services to align with neurodiversity-affirming approaches. Finally, 'Supports are beneficial' highlights the perceived positive impact that early, individualised support services can provide for autistic children. These findings predominantly signal a shift away from medicalised models towards a neurodiversity-affirming approach across participant groups.Lay abstract We do not know much about what support services people think are okay for young autistic children. This study was a survey of 253 people. We asked autistic adults, parents, and professionals from Australia and New Zealand whether they thought it was okay to provide support services to autistic children. About half the people who shared their thoughts said it was okay to provide support services to autistic children and the other half said it depended on what the support service was like. They had three main ideas about whether support services were okay or not. The first one is that we should remember that these autistic children are children first, so we need to keep their childhood experiences in mind and let them have a say in decisions. The second is that we should not try to 'fix' the child, but instead, use supports that respect and understand the unique ways the child thinks. The final idea is that early, personalised help is good for autistic children and can make a positive difference in their lives. This study suggests that we should focus on what each child needs, think about how children can join in, and provide help in ways that respect autistic children. En ligne : https://dx.doi.org/10.1177/13623613241302372 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555

'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia / Diana Weiting TAN in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1344-1356 Titre : 'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia Type de document : texte imprimé Auteurs : Diana Weiting TAN, Auteur ; Marion RABUKA, Auteur ; Tori HAAR, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1344-1356 Langues : Anglais (eng) Mots-clés : autism  co-production  discrimination  higher education  inclusive education  participatory research  stigma Index. décimale : PER Périodiques Résumé : In recent years, the number of autistic people entering university has increased in Australia and worldwide. While an encouraging trend, autistic students' completion rates remain much lower than non-autistic students in Australia. Perhaps unsurprisingly, numerous studies investigating autistic people?s experiences at universities have identified stigma and discrimination as a significant barrier facing autistic people in higher education. In this study, our team of autistic co-researchers and non-autistic researchers co-produced an in-depth qualitative study to understand the contexts and circumstances in which autistic people felt stigmatised or experienced discrimination at universities in Australia. We interviewed 21 autistic people who either had completed at least one university course, or were studying a university course, or had enrolled in but discontinued at least one university course in Australia. Using reflexive thematic analysis, we identified four themes: (1) 'My disability is something that people just don t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. Based on these findings, we suggested implementing Universal Design for Learning, neurodiversity-affirming and trauma-informed practices, together with a participatory approach to better design university curricula, processes, and support services for autistic students. Lay Abstract Autistic students experience many challenges at university. One significant barrier identified in past research was autistic students' experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students' experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university - some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) 'My disability is something that people just don t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs. En ligne : https://dx.doi.org/10.1177/13623613231219744 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] 'It?s a symbolic violence': Autistic people?s experiences of discrimination at universities in Australia [texte imprimé] / Diana Weiting TAN, Auteur ; Marion RABUKA, Auteur ; Tori HAAR, Auteur ; Elizabeth PELLICANO, Auteur . - p.1344-1356. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1344-1356 Mots-clés : autism  co-production  discrimination  higher education  inclusive education  participatory research  stigma Index. décimale : PER Périodiques Résumé : In recent years, the number of autistic people entering university has increased in Australia and worldwide. While an encouraging trend, autistic students' completion rates remain much lower than non-autistic students in Australia. Perhaps unsurprisingly, numerous studies investigating autistic people?s experiences at universities have identified stigma and discrimination as a significant barrier facing autistic people in higher education. In this study, our team of autistic co-researchers and non-autistic researchers co-produced an in-depth qualitative study to understand the contexts and circumstances in which autistic people felt stigmatised or experienced discrimination at universities in Australia. We interviewed 21 autistic people who either had completed at least one university course, or were studying a university course, or had enrolled in but discontinued at least one university course in Australia. Using reflexive thematic analysis, we identified four themes: (1) 'My disability is something that people just don t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. Based on these findings, we suggested implementing Universal Design for Learning, neurodiversity-affirming and trauma-informed practices, together with a participatory approach to better design university curricula, processes, and support services for autistic students. Lay Abstract Autistic students experience many challenges at university. One significant barrier identified in past research was autistic students' experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students' experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university - some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) 'My disability is something that people just don t have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs. En ligne : https://dx.doi.org/10.1177/13623613231219744 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

'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

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

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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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