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“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)
[article]
Titre : “Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa Type de document : Texte imprimé et/ou numérique 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
in Autism Research > 5-3 (June 2012) . - p.201-210[article] “Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa [Texte imprimé et/ou numérique] / 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)
[article]
Titre : 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research Type de document : Texte imprimé et/ou numérique Auteurs : Jacquiline DEN HOUTING, Auteur ; Julianne HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.148-163 Langues : Anglais (eng) Mots-clés : autism co-production community engagement participatory research patient and public involvement stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437
in Autism > 25-1 (January 2021) . - p.148-163[article] 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research [Texte imprimé et/ou numérique] / Jacquiline DEN HOUTING, Auteur ; Julianne HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur . - p.148-163.
Langues : Anglais (eng)
in Autism > 25-1 (January 2021) . - p.148-163
Mots-clés : autism co-production community engagement participatory research patient and public involvement stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families / V. C. FONG in Autism, 26-2 (February 2022)
[article]
Titre : A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families Type de document : Texte imprimé et/ou numérique Auteurs : V. C. FONG, Auteur ; B. S. LEE, Auteur ; G. 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
in Autism > 26-2 (February 2022) . - p.525-537[article] A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families [Texte imprimé et/ou numérique] / V. C. FONG, Auteur ; B. S. LEE, Auteur ; G. 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 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)
[article]
Titre : Development and validation of the conversation questionnaire: A psychometric measure of communication challenges generated from the self-reports of autistic people Type de document : Texte imprimé et/ou numérique Auteurs : Alexander C. WILSON, Auteur Langues : Anglais (eng) Mots-clés : Autism social communication conversation pragmatics psychometrics community engagement Index. décimale : PER Périodiques Résumé : Existing measures of communication challenges in autism are based on diagnostic criteria and research/clinical observations of autistic people, rather than what autistic people themselves identify as difficulties. In this study, the Conversation Questionnaire (CQ) was developed based on community engagement with autistic people to identify what they find challenging about conversation. This new tool was then administered online to autistic, dyslexic and neurotypical people (N=312) in a validation phase of the study. Item-response theory modelling indicated that a two-dimensional structure accounted for response patterns. These dimensions reflected difficulties knowing what to say (15 items) and engaging in behaviours possibly disruptive to neurotypical conversation (21 items). The dimensions showed good internal consistency and convergent and discriminant validity, and could distinguish between autistic and neurotypical people (d=1.59 and d=2.07 respectively). The CQ might help contribute to diagnostic assessment for autism in adults as part of a holistic assessment. The questionnaire might also be useful with other neurodiverse groups, and provide a tool for clinicians and researchers to identify individuals’ strengths and difficulties in conversation (e.g., as part of interventions in speech and language therapy). En ligne : http://dx.doi.org/10.1177/23969415221123286 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491
in Autism & Developmental Language Impairments > 7 (January-December 2022)[article] Development and validation of the conversation questionnaire: A psychometric measure of communication challenges generated from the self-reports of autistic people [Texte imprimé et/ou numérique] / Alexander C. WILSON, Auteur.
Langues : Anglais (eng)
in Autism & Developmental Language Impairments > 7 (January-December 2022)
Mots-clés : Autism social communication conversation pragmatics psychometrics community engagement Index. décimale : PER Périodiques Résumé : Existing measures of communication challenges in autism are based on diagnostic criteria and research/clinical observations of autistic people, rather than what autistic people themselves identify as difficulties. In this study, the Conversation Questionnaire (CQ) was developed based on community engagement with autistic people to identify what they find challenging about conversation. This new tool was then administered online to autistic, dyslexic and neurotypical people (N=312) in a validation phase of the study. Item-response theory modelling indicated that a two-dimensional structure accounted for response patterns. These dimensions reflected difficulties knowing what to say (15 items) and engaging in behaviours possibly disruptive to neurotypical conversation (21 items). The dimensions showed good internal consistency and convergent and discriminant validity, and could distinguish between autistic and neurotypical people (d=1.59 and d=2.07 respectively). The CQ might help contribute to diagnostic assessment for autism in adults as part of a holistic assessment. The questionnaire might also be useful with other neurodiverse groups, and provide a tool for clinicians and researchers to identify individuals’ strengths and difficulties in conversation (e.g., as part of interventions in speech and language therapy). En ligne : http://dx.doi.org/10.1177/23969415221123286 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491