10 recherche sur le mot-clé 'stakeholders'

Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders / Thomas W. FRAZIER in Journal of Autism and Developmental Disorders, 48-11 (November 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-11 (November 2018) . - p.3965-3971 Titre : Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders Type de document : texte imprimé Auteurs : Thomas W. FRAZIER, Auteur ; Geraldine DAWSON, Auteur ; Donna S. MURRAY, Auteur ; Andy SHIH, Auteur ; Jessica Snyder SACHS, Auteur ; Angela GEIGER, Auteur Année de publication : 2018 Article en page(s) : p.3965-3971 Langues : Anglais (eng) Mots-clés : Adult transition  Autism  Caregivers  Funding  Research priorities  Stakeholders Index. décimale : PER Périodiques Résumé : Inclusion of stakeholder voices in the allocation of research funding can increase the relevance of results and improve community engagement in research. We describe the results of an online survey that gathered input from community stakeholders regarding autism research priorities. A demographically diverse sample of respondents (N = 6004; 79.1% female; 72.5% ages 30-59; 86.4% USA) completed the survey. Results indicated a preference for applied relative to basic science topics, though both basic and applied science areas were rated as important. Respondents gave their highest ratings to research focused on co-occurring conditions, health and well-being, adult transition, and lifespan issues. These results can guide decision-making by public and private funders when developing science funding priorities and engaging in science dissemination activities. En ligne : http://dx.doi.org/10.1007/s10803-018-3642-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370 [article] Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders [texte imprimé] / Thomas W. FRAZIER, Auteur ; Geraldine DAWSON, Auteur ; Donna S. MURRAY, Auteur ; Andy SHIH, Auteur ; Jessica Snyder SACHS, Auteur ; Angela GEIGER, Auteur . - 2018 . - p.3965-3971. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-11 (November 2018) . - p.3965-3971 Mots-clés : Adult transition  Autism  Caregivers  Funding  Research priorities  Stakeholders Index. décimale : PER Périodiques Résumé : Inclusion of stakeholder voices in the allocation of research funding can increase the relevance of results and improve community engagement in research. We describe the results of an online survey that gathered input from community stakeholders regarding autism research priorities. A demographically diverse sample of respondents (N = 6004; 79.1% female; 72.5% ages 30-59; 86.4% USA) completed the survey. Results indicated a preference for applied relative to basic science topics, though both basic and applied science areas were rated as important. Respondents gave their highest ratings to research focused on co-occurring conditions, health and well-being, adult transition, and lifespan issues. These results can guide decision-making by public and private funders when developing science funding priorities and engaging in science dissemination activities. En ligne : http://dx.doi.org/10.1007/s10803-018-3642-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370

Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood / Vanessa H. BAL in Autism Research, 11-11 (November 2018)  

Public ISBD [article]  inAutism Research > 11-11 (November 2018) . - p.1446-1454 Titre : Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood Type de document : texte imprimé Auteurs : Vanessa H. BAL, Auteur ; Robert L. HENDREN, Auteur ; Tony CHARMAN, Auteur ; Leonard ABBEDUTO, Auteur ; Connie KASARI, Auteur ; Laura G. KLINGER, Auteur ; Whitney ENCE, Auteur ; Tara GLAVIN, Auteur ; Gregory L. LYONS, Auteur ; Erin ROSENBERG, Auteur Article en page(s) : p.1446-1454 Langues : Anglais (eng) Mots-clés : lifespan  outcome  stakeholders  strengths Index. décimale : PER Périodiques Résumé : The autism spectrum disorder (ASD) research community is increasingly considering the importance of measuring outcomes that are meaningful to individuals with ASD and their families. The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from 280 participants, including people with ASD and their families, service providers, and researchers. Six themes were identified: (a) the definition of "outcome" varies by context and perspective; (b) the need to broaden the scope of what researchers measure; (c) the need for new assessment tools; (d) the need to expand data analytic methods; (e) where to focus (with emphasis on considering different developmental stages and aspects of diversity); and (f) a need for community partnerships to bridge research and daily practice. The challenge that the research community now faces is how to move the evidence base for clinical practice forward while keeping alive the divergence of views and considerations that are relevant for thinking about complex outcomes for the highly heterogeneous group of individuals with ASD. This commentary provides recommendations, with an emphasis on lifespan viewpoints that encompass individual strengths and preferences. Autism Research 2018, 11: 1446-1454. (c) 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from a variety of stakeholders. This commentary outlines the six themes identified from keynote and panel presentations and audience-participated discussions. Recommendations are made to emphasize perspectives that look across the lifespan and encompass individual strengths and preferences. En ligne : http://dx.doi.org/10.1002/aur.2034 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370 [article] Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood [texte imprimé] / Vanessa H. BAL, Auteur ; Robert L. HENDREN, Auteur ; Tony CHARMAN, Auteur ; Leonard ABBEDUTO, Auteur ; Connie KASARI, Auteur ; Laura G. KLINGER, Auteur ; Whitney ENCE, Auteur ; Tara GLAVIN, Auteur ; Gregory L. LYONS, Auteur ; Erin ROSENBERG, Auteur . - p.1446-1454. Langues : Anglais (eng) in Autism Research > 11-11 (November 2018) . - p.1446-1454 Mots-clés : lifespan  outcome  stakeholders  strengths Index. décimale : PER Périodiques Résumé : The autism spectrum disorder (ASD) research community is increasingly considering the importance of measuring outcomes that are meaningful to individuals with ASD and their families. The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from 280 participants, including people with ASD and their families, service providers, and researchers. Six themes were identified: (a) the definition of "outcome" varies by context and perspective; (b) the need to broaden the scope of what researchers measure; (c) the need for new assessment tools; (d) the need to expand data analytic methods; (e) where to focus (with emphasis on considering different developmental stages and aspects of diversity); and (f) a need for community partnerships to bridge research and daily practice. The challenge that the research community now faces is how to move the evidence base for clinical practice forward while keeping alive the divergence of views and considerations that are relevant for thinking about complex outcomes for the highly heterogeneous group of individuals with ASD. This commentary provides recommendations, with an emphasis on lifespan viewpoints that encompass individual strengths and preferences. Autism Research 2018, 11: 1446-1454. (c) 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from a variety of stakeholders. This commentary outlines the six themes identified from keynote and panel presentations and audience-participated discussions. Recommendations are made to emphasize perspectives that look across the lifespan and encompass individual strengths and preferences. En ligne : http://dx.doi.org/10.1002/aur.2034 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370

Exploring community perspectives on autism genetics research: Indications of supportive views and educational needs / Melanie M. DE WIT in Autism, 30-2 (February 2026)  

Public ISBD [article]  inAutism > 30-2 (February 2026) . - p.390-401 Titre : Exploring community perspectives on autism genetics research: Indications of supportive views and educational needs Type de document : texte imprimé Auteurs : Melanie M. DE WIT, Auteur ; Janneke R. ZINKSTOK, Auteur ; Riley BUIJSMAN, Auteur ; Abdel ABDELLAOUI, Auteur ; Sander BEGEER, Auteur ; Tinca J.C. POLDERMAN, Auteur Article en page(s) : p.390-401 Langues : Anglais (eng) Mots-clés : Behavioural genetics  community perspectives  genetic testing and counselling  genetics  stakeholders Index. décimale : PER Périodiques Résumé : Autistic advocates have raised substantial concerns regarding genetics research on autism. It is yet unclear whether these concerns reflect the perspectives of the broader autism community. In a sample of 1757 Dutch autistic adults, 445 parents of autistic children and 126 legal representatives of autistic adults, we explored perspectives on genetics research. We used a pilot repeated survey, consisting of questions about the perceived importance of the heritability of autism, reasons for this importance and the desire to learn more about heritability. Over 95% of the participants found it at least a little important to know that autism is highly heritable, and 67% would like to learn more about it. Participants mentioned that they find it important to increase knowledge about the causes of autism, and to improve the diagnostic process. There were no substantial differences in perspectives between stakeholder groups. Contrasting previous work, this pilot study indicates support for genetics research in autism, which highlights diversity in community perspectives. It also identifies an unmet educational need. We conclude that education on the topic of genetics, active research involvement of the autism community, and an ongoing dialogue between all parties are crucial to ethically and meaningfully move autism genetics forward.Lay abstract Some autistic people have shared strong concerns about research on the genetics of autism. However, this has not been investigated systematically in a large and diverse group of stakeholders. Therefore, researchers asked questions to over 1700 autistic adults in the Netherlands, 445 parents of autistic children and 126 legal guardians of autistic adults. The questions were (a) ‘is it important to know that autism is heritable?’, (b) ‘why is this important to know?’ and (c) ‘would you want to learn more about the heritability of autism?’. Over 95% of the people said it is at least a little important to know that autism is heritable. Around 67% also said they would like to learn more about it. Many people said that learning about the genetics of autism could help us understand the causes of autism better and could help improve the diagnostic process. This study shows that there are different opinions about genetics research. It was also noted that people need clear and simple information about autism genetics. To make autism genetics research better and more respectful, it is important to give clear information about genetics, to involve autistic people and their families in research, and to have open conversations between researchers and the autism community. This way, autism genetics research can move forward in a way that is fair and helpful for everyone. En ligne : https://dx.doi.org/10.1177/13623613251384342 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=579 [article] Exploring community perspectives on autism genetics research: Indications of supportive views and educational needs [texte imprimé] / Melanie M. DE WIT, Auteur ; Janneke R. ZINKSTOK, Auteur ; Riley BUIJSMAN, Auteur ; Abdel ABDELLAOUI, Auteur ; Sander BEGEER, Auteur ; Tinca J.C. POLDERMAN, Auteur . - p.390-401. Langues : Anglais (eng) in Autism > 30-2 (February 2026) . - p.390-401 Mots-clés : Behavioural genetics  community perspectives  genetic testing and counselling  genetics  stakeholders Index. décimale : PER Périodiques Résumé : Autistic advocates have raised substantial concerns regarding genetics research on autism. It is yet unclear whether these concerns reflect the perspectives of the broader autism community. In a sample of 1757 Dutch autistic adults, 445 parents of autistic children and 126 legal representatives of autistic adults, we explored perspectives on genetics research. We used a pilot repeated survey, consisting of questions about the perceived importance of the heritability of autism, reasons for this importance and the desire to learn more about heritability. Over 95% of the participants found it at least a little important to know that autism is highly heritable, and 67% would like to learn more about it. Participants mentioned that they find it important to increase knowledge about the causes of autism, and to improve the diagnostic process. There were no substantial differences in perspectives between stakeholder groups. Contrasting previous work, this pilot study indicates support for genetics research in autism, which highlights diversity in community perspectives. It also identifies an unmet educational need. We conclude that education on the topic of genetics, active research involvement of the autism community, and an ongoing dialogue between all parties are crucial to ethically and meaningfully move autism genetics forward.Lay abstract Some autistic people have shared strong concerns about research on the genetics of autism. However, this has not been investigated systematically in a large and diverse group of stakeholders. Therefore, researchers asked questions to over 1700 autistic adults in the Netherlands, 445 parents of autistic children and 126 legal guardians of autistic adults. The questions were (a) ‘is it important to know that autism is heritable?’, (b) ‘why is this important to know?’ and (c) ‘would you want to learn more about the heritability of autism?’. Over 95% of the people said it is at least a little important to know that autism is heritable. Around 67% also said they would like to learn more about it. Many people said that learning about the genetics of autism could help us understand the causes of autism better and could help improve the diagnostic process. This study shows that there are different opinions about genetics research. It was also noted that people need clear and simple information about autism genetics. To make autism genetics research better and more respectful, it is important to give clear information about genetics, to involve autistic people and their families in research, and to have open conversations between researchers and the autism community. This way, autism genetics research can move forward in a way that is fair and helpful for everyone. En ligne : https://dx.doi.org/10.1177/13623613251384342 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=579

The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses / Zohreh TALEBIZADEH in Autism Research, 13-8 (August 2020)  

Public ISBD [article]  inAutism Research > 13-8 (August 2020) . - p.1286-1299 Titre : The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses Type de document : texte imprimé Auteurs : Zohreh TALEBIZADEH, Auteur ; Ayten SHAH, Auteur Article en page(s) : p.1286-1299 Langues : Anglais (eng) Mots-clés : autism  conceptual framework  genetics  engagement  outcomes  stakeholders  translational research Index. décimale : PER Périodiques Résumé : The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous condition like autism. As one path toward addressing these challenges, we have previously introduced Autism Genetics Outcomes (AutGO), an initiative to support broad stakeholder partnerships and promote a new integrated concept called GO (i.e., research approaches that draw on both genetics and clinical outcomes perspectives). Herein, we developed a workflow for collecting stakeholders' feedback toward the development of a GO hypothesis. AutGO is an evolving initiative, and here we describe how its three essential components (conceptual framework, applicability, and implementation) have been developed. As a proof-of-concept, the AutGO team sought to demonstrate how a GO hypothesis could be developed using a semi-structured literature review workflow. We also developed a prototype from published reports and formulated a GO hypothesis for autism. Rather than seeking community stakeholder input after a research project is conceptualized and designed, the developed conceptual framework demonstrates the feasibility of formulating scientific hypotheses by engaging stakeholders in retrospective semi-structured literature reviews. The presented workflow, prototype, and discussed recommendations will bring awareness in the autism research community about the benefits of applying the GO approach in order to promote translational aspects in genetics research. LAY SUMMARY: We used a community-based engagement approach to develop AutGO (Autism Genetics Outcomes), an initiative to establish stakeholder partnerships and to promote research approaches (we refer to as GO) that draw on both genetics and clinical outcomes perspectives. Specifically, we developed a conceptual framework that includes a literature review process for developing GO hypotheses and stakeholder feedback collection protocol. Our work will bring awareness in the autism research community about the benefits of integrating patient perspectives in genetics research. Autism Res 2020, 13: 1286-1299. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC. En ligne : http://dx.doi.org/10.1002/aur.2331 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430 [article] The AutGO Initiative: A Conceptual Framework for Developing Genetics-Outcomes Research Hypotheses [texte imprimé] / Zohreh TALEBIZADEH, Auteur ; Ayten SHAH, Auteur . - p.1286-1299. Langues : Anglais (eng) in Autism Research > 13-8 (August 2020) . - p.1286-1299 Mots-clés : autism  conceptual framework  genetics  engagement  outcomes  stakeholders  translational research Index. décimale : PER Périodiques Résumé : The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous condition like autism. As one path toward addressing these challenges, we have previously introduced Autism Genetics Outcomes (AutGO), an initiative to support broad stakeholder partnerships and promote a new integrated concept called GO (i.e., research approaches that draw on both genetics and clinical outcomes perspectives). Herein, we developed a workflow for collecting stakeholders' feedback toward the development of a GO hypothesis. AutGO is an evolving initiative, and here we describe how its three essential components (conceptual framework, applicability, and implementation) have been developed. As a proof-of-concept, the AutGO team sought to demonstrate how a GO hypothesis could be developed using a semi-structured literature review workflow. We also developed a prototype from published reports and formulated a GO hypothesis for autism. Rather than seeking community stakeholder input after a research project is conceptualized and designed, the developed conceptual framework demonstrates the feasibility of formulating scientific hypotheses by engaging stakeholders in retrospective semi-structured literature reviews. The presented workflow, prototype, and discussed recommendations will bring awareness in the autism research community about the benefits of applying the GO approach in order to promote translational aspects in genetics research. LAY SUMMARY: We used a community-based engagement approach to develop AutGO (Autism Genetics Outcomes), an initiative to establish stakeholder partnerships and to promote research approaches (we refer to as GO) that draw on both genetics and clinical outcomes perspectives. Specifically, we developed a conceptual framework that includes a literature review process for developing GO hypotheses and stakeholder feedback collection protocol. Our work will bring awareness in the autism research community about the benefits of integrating patient perspectives in genetics research. Autism Res 2020, 13: 1286-1299. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC. En ligne : http://dx.doi.org/10.1002/aur.2331 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430

'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

‘Picking the best of a bad bunch’: Exploring stakeholder perspectives of self-harm assessment tools for autistic adults / Victoria NEWELL in Autism, 29-11 (November 2025)  

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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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Sibling Relationships: Parent-Child Agreement and Contributions of Siblings With and Without ASD / Megan L. BRACONNIER in Journal of Autism and Developmental Disorders, 48-5 (May 2018)  

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Stakeholder perspectives on transition planning, implementation, and outcomes for students with autism spectrum disorder / Claire SNELL-ROOD in Autism, 24-5 (July 2020)  

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A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults / Sarah WIGHAM in Autism, 26-8 (November 2022)  

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