7 recherche sur le mot-clé 'community engagement'

“Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa / Roy Richard GRINKER in Autism Research, 5-3 (June 2012)  

Public ISBD [article]  inAutism Research > 5-3 (June 2012) . - p.201-210 Titre : “Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa Type de document : texte imprimé Auteurs : Roy Richard GRINKER, Auteur ; Nola J. CHAMBERS, Auteur ; Nono NJONGWE, Auteur ; Adrienne E. LAGMAN, Auteur ; Whitney GUTHRIE, Auteur ; Sheri T. STRONACH, Auteur ; Bonnie O. RICHARD, Auteur ; Shuaib KAUCHALI, Auteur ; Beverley KILLIAN, Auteur ; Meera CHHAGAN, Auteur ; Fikri YUCEL, Auteur ; Mwenda KUDUMU, Auteur ; Christie BARKER-CUMMINGS, Auteur ; Judith K. GRETHER, Auteur ; Amy M. WETHERBY, Auteur Année de publication : 2012 Article en page(s) : p.201-210 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  community engagement  cross-cultural studies  epidemiology  Korea  South Africa Index. décimale : PER Périodiques Résumé : Little research has been conducted on behavioral characteristics of children with autism spectrum disorder (ASD) from diverse cultures within the US, or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in two community-based research projects—an epidemiologic investigation of 7- to 12-year olds in South Korea and the Early Autism Project, an ASD detection program for 18- to 36-month-old Zulu-speaking children in South Africa. Despite the differences in wealth between these communities, ASD is underdiagnosed in both settings, and generally not reported in clinical or educational records. Moreover, in both countries, there is low availability of services. In both cases, local knowledge helped researchers to address both ethnographic as well as practical problems. Researchers identified the ways in which these communities generate and negotiate the cultural meanings of developmental disorders. Researchers incorporated that knowledge, as they engaged communities in a research protocol, adapted and translated screening and diagnostic tools, and developed methods for screening, evaluating, and diagnosing children with ASD. En ligne : http://dx.doi.org/10.1002/aur.1229 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=163 [article] “Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa [texte imprimé] / Roy Richard GRINKER, Auteur ; Nola J. CHAMBERS, Auteur ; Nono NJONGWE, Auteur ; Adrienne E. LAGMAN, Auteur ; Whitney GUTHRIE, Auteur ; Sheri T. STRONACH, Auteur ; Bonnie O. RICHARD, Auteur ; Shuaib KAUCHALI, Auteur ; Beverley KILLIAN, Auteur ; Meera CHHAGAN, Auteur ; Fikri YUCEL, Auteur ; Mwenda KUDUMU, Auteur ; Christie BARKER-CUMMINGS, Auteur ; Judith K. GRETHER, Auteur ; Amy M. WETHERBY, Auteur . - 2012 . - p.201-210. Langues : Anglais (eng) in Autism Research > 5-3 (June 2012) . - p.201-210 Mots-clés : autism spectrum disorder  community engagement  cross-cultural studies  epidemiology  Korea  South Africa Index. décimale : PER Périodiques Résumé : Little research has been conducted on behavioral characteristics of children with autism spectrum disorder (ASD) from diverse cultures within the US, or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in two community-based research projects—an epidemiologic investigation of 7- to 12-year olds in South Korea and the Early Autism Project, an ASD detection program for 18- to 36-month-old Zulu-speaking children in South Africa. Despite the differences in wealth between these communities, ASD is underdiagnosed in both settings, and generally not reported in clinical or educational records. Moreover, in both countries, there is low availability of services. In both cases, local knowledge helped researchers to address both ethnographic as well as practical problems. Researchers identified the ways in which these communities generate and negotiate the cultural meanings of developmental disorders. Researchers incorporated that knowledge, as they engaged communities in a research protocol, adapted and translated screening and diagnostic tools, and developed methods for screening, evaluating, and diagnosing children with ASD. En ligne : http://dx.doi.org/10.1002/aur.1229 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=163

'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

A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families / Vanessa C. FONG in Autism, 26-2 (February 2022)  

Public ISBD [article]  inAutism > 26-2 (February 2022) . - p.525-537 Titre : A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families Type de document : texte imprimé Auteurs : Vanessa C. FONG, Auteur ; Bo Sang LEE, Auteur ; Grace IAROCCI, Auteur Article en page(s) : p.525-537 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  community engagement  education services  family functioning and support  policy  qualitative research  social services  of interest with respect to the research, authorship, and/or publication of this  article. Index. décimale : PER Périodiques Résumé : Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. En ligne : http://dx.doi.org/10.1177/13623613211034067 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452 [article] A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families [texte imprimé] / Vanessa C. FONG, Auteur ; Bo Sang LEE, Auteur ; Grace IAROCCI, Auteur . - p.525-537. Langues : Anglais (eng) in Autism > 26-2 (February 2022) . - p.525-537 Mots-clés : autism spectrum disorders  community engagement  education services  family functioning and support  policy  qualitative research  social services  of interest with respect to the research, authorship, and/or publication of this  article. Index. décimale : PER Périodiques Résumé : Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. En ligne : http://dx.doi.org/10.1177/13623613211034067 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=452

Community-engaged research: Bringing the science of developmental psychopathology into the real world / Stephanie H. PARADE ; Ernestine JENNINGS ; Lindsay HUFFHINES ; Darlynn M. ROJO-WISSAR ; Colleen CARON ; Blythe BERGER ; Laura R. STROUD ; Audrey R. TYRKA in Development and Psychopathology, 36-5 (December 2024)  

Public ISBD [article]  inDevelopment and Psychopathology > 36-5 (December 2024) . - p.2349-2356 Titre : Community-engaged research: Bringing the science of developmental psychopathology into the real world : Development and Psychopathology Type de document : texte imprimé Auteurs : Stephanie H. PARADE, Auteur ; Ernestine JENNINGS, Auteur ; Lindsay HUFFHINES, Auteur ; Darlynn M. ROJO-WISSAR, Auteur ; Colleen CARON, Auteur ; Blythe BERGER, Auteur ; Laura R. STROUD, Auteur ; Audrey R. TYRKA, Auteur Année de publication : 2024 Article en page(s) : p.2349-2356 Langues : Anglais (eng) Mots-clés : Academic-community partnerships  community collaboration  community engagement  community-engaged research  research-community partnerships Index. décimale : PER Périodiques Résumé : The science of developmental psychopathology has made outstanding progress over the past 40 years in understanding adaptive and maladaptive developmental processes across the life span. Yet most of this work has been researcher driven with little involvement of community partners in the research process, limiting the potential public health significance of our work. To continue to advance the field we must move beyond the physical and conceptual walls of our research laboratories and into the real world. In this article, we define and describe the importance of community-engaged research, and present our overarching principles for engaging the community including practicing respect, shared power and decision-making, prioritizing the needs of the community, and engaging in consistent and transparent communication. We present several associated recommendations for best practice and highlight examples from our own research that is grounded in a developmental psychopathology perspective to illustrate these practices. Recommendations for the future of the discipline of development and psychopathology, with emphasis on training and continuing education, are described. En ligne : https://dx.doi.org/10.1017/S0954579424001020 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=545 [article] Community-engaged research: Bringing the science of developmental psychopathology into the real world : Development and Psychopathology [texte imprimé] / Stephanie H. PARADE, Auteur ; Ernestine JENNINGS, Auteur ; Lindsay HUFFHINES, Auteur ; Darlynn M. ROJO-WISSAR, Auteur ; Colleen CARON, Auteur ; Blythe BERGER, Auteur ; Laura R. STROUD, Auteur ; Audrey R. TYRKA, Auteur . - 2024 . - p.2349-2356. Langues : Anglais (eng) in Development and Psychopathology > 36-5 (December 2024) . - p.2349-2356 Mots-clés : Academic-community partnerships  community collaboration  community engagement  community-engaged research  research-community partnerships Index. décimale : PER Périodiques Résumé : The science of developmental psychopathology has made outstanding progress over the past 40 years in understanding adaptive and maladaptive developmental processes across the life span. Yet most of this work has been researcher driven with little involvement of community partners in the research process, limiting the potential public health significance of our work. To continue to advance the field we must move beyond the physical and conceptual walls of our research laboratories and into the real world. In this article, we define and describe the importance of community-engaged research, and present our overarching principles for engaging the community including practicing respect, shared power and decision-making, prioritizing the needs of the community, and engaging in consistent and transparent communication. We present several associated recommendations for best practice and highlight examples from our own research that is grounded in a developmental psychopathology perspective to illustrate these practices. Recommendations for the future of the discipline of development and psychopathology, with emphasis on training and continuing education, are described. En ligne : https://dx.doi.org/10.1017/S0954579424001020 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=545

‘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)  

Public ISBD [article]  inAutism > 29-11 (November 2025) . - p.2818-2831 Titre : ‘You feel part of something bigger’: Stakeholders’ experiences of a long-term community–academic participatory research partnership Type de document : texte imprimé Auteurs : Elizabeth PELLICANO, Auteur ; Catherine A. BENT, Auteur ; Teresa IACONO, Auteur ; Kristy CAPES, Auteur ; Shannon UPSON, Auteur ; Kristelle HUDRY, Auteur Article en page(s) : p.2818-2831 Langues : Anglais (eng) Mots-clés : community–academic partnership  community engagement  early intervention  early years  participatory research  service evaluation Index. décimale : PER Périodiques Résumé : Many community–academic partnerships are established to conduct meaningful research and practice. Yet, little is written about their sustainability and what does exist suggests that effective partnerships are hard to sustain. In this study, we sought insights into what might support successful, enduring community–academic partnerships focused on early childhood autism service provision. We conducted semi-structured interviews and focus groups with 30 staff connected to a university-based early childhood service in education, allied health, management, and research roles, who had been involved in a decade-long community–academic partnership. We analysed the data using reflexive thematic analysis adopting an inductive approach. We identified three key themes. Staff shared strong values and commitments towards inclusive practice and evidence-based practice, which were embedded in the ethos of the partnership (Theme 1). They reported tangible, mutual benefits from working in partnership, with gains in learning and confidence supporting autistic children and families (Theme 2). Interviewees also highlighted the importance of strong equitable relationships, open communication, and fair processes, even if these were not always straightforward to achieve (Theme 3). These insights illustrate the value of ongoing monitoring of community–academic partnerships seeking to inform autism research programmes, policies and practices, while also building sustained community capacity.Lay Abstract When academic researchers work in partnership with community members, the research that gets done is usually more meaningful to people’s everyday lives. But these ‘community–academic partnerships’ can be difficult to set up, and even more difficult to keep going. In this project, we wanted to know what factors help to support the success of long-term community–academic partnerships, specifically for early childhood autism services. We spoke in depth to 30 staff connected to a university-based early childhood service, including early childhood educators, allied health professionals (psychologists, speech pathologists, occupational therapists), people managing the service and researchers. All had been involved in a community–research partnership that had been going on for a decade. Two researchers independent of the service led the interviews and analysis, looking for patterns in participants’ responses. We identified three main ideas or ‘themes’. Staff spoke of their strong values and commitments towards inclusive practice and evidence-based practice, which were shared among those within the partnership (Theme 1). They felt they had learned a lot from being involved in the partnership and had gained confidence supporting autistic children and families (Theme 2). Above all, though, they spoke of how the relationships within the partnership really mattered to making it a success. They emphasised the importance of trust, good communication and fair processes – but also noted that these things were not always achievable (Theme 3). These findings help us understand how researchers and community members can work effectively together to bring lasting benefits to autism research and services, and to the community more broadly. En ligne : https://dx.doi.org/10.1177/13623613251348485 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=570 [article] ‘You feel part of something bigger’: Stakeholders’ experiences of a long-term community–academic participatory research partnership [texte imprimé] / Elizabeth PELLICANO, Auteur ; Catherine A. BENT, Auteur ; Teresa IACONO, Auteur ; Kristy CAPES, Auteur ; Shannon UPSON, Auteur ; Kristelle HUDRY, Auteur . - p.2818-2831. Langues : Anglais (eng) in Autism > 29-11 (November 2025) . - p.2818-2831 Mots-clés : community–academic partnership  community engagement  early intervention  early years  participatory research  service evaluation Index. décimale : PER Périodiques Résumé : Many community–academic partnerships are established to conduct meaningful research and practice. Yet, little is written about their sustainability and what does exist suggests that effective partnerships are hard to sustain. In this study, we sought insights into what might support successful, enduring community–academic partnerships focused on early childhood autism service provision. We conducted semi-structured interviews and focus groups with 30 staff connected to a university-based early childhood service in education, allied health, management, and research roles, who had been involved in a decade-long community–academic partnership. We analysed the data using reflexive thematic analysis adopting an inductive approach. We identified three key themes. Staff shared strong values and commitments towards inclusive practice and evidence-based practice, which were embedded in the ethos of the partnership (Theme 1). They reported tangible, mutual benefits from working in partnership, with gains in learning and confidence supporting autistic children and families (Theme 2). Interviewees also highlighted the importance of strong equitable relationships, open communication, and fair processes, even if these were not always straightforward to achieve (Theme 3). These insights illustrate the value of ongoing monitoring of community–academic partnerships seeking to inform autism research programmes, policies and practices, while also building sustained community capacity.Lay Abstract When academic researchers work in partnership with community members, the research that gets done is usually more meaningful to people’s everyday lives. But these ‘community–academic partnerships’ can be difficult to set up, and even more difficult to keep going. In this project, we wanted to know what factors help to support the success of long-term community–academic partnerships, specifically for early childhood autism services. We spoke in depth to 30 staff connected to a university-based early childhood service, including early childhood educators, allied health professionals (psychologists, speech pathologists, occupational therapists), people managing the service and researchers. All had been involved in a community–research partnership that had been going on for a decade. Two researchers independent of the service led the interviews and analysis, looking for patterns in participants’ responses. We identified three main ideas or ‘themes’. Staff spoke of their strong values and commitments towards inclusive practice and evidence-based practice, which were shared among those within the partnership (Theme 1). They felt they had learned a lot from being involved in the partnership and had gained confidence supporting autistic children and families (Theme 2). Above all, though, they spoke of how the relationships within the partnership really mattered to making it a success. They emphasised the importance of trust, good communication and fair processes – but also noted that these things were not always achievable (Theme 3). These findings help us understand how researchers and community members can work effectively together to bring lasting benefits to autism research and services, and to the community more broadly. En ligne : https://dx.doi.org/10.1177/13623613251348485 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=570

Development and validation of the conversation questionnaire: A psychometric measure of communication challenges generated from the self-reports of autistic people / Alexander C. WILSON in Autism & Developmental Language Impairments, 7 (January-December 2022)  

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The development and utilization of a diversity advisory board in an intervention to support social skill development for autistic transition-aged youth / Ed-Dee G. WILLIAMS in Autism, 29-8 (August 2025)  

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