Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda / Katherine M. WALTON in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1120-1134 Titre : Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda Type de document : Texte imprimé et/ou numérique Auteurs : Katherine M. WALTON, Auteur ; Alayna R. BOROWY, Auteur ; Rachel A. GORDON, Auteur ; Allison L. WAINER, Auteur Article en page(s) : p.1120-1134 Langues : Anglais (eng) Mots-clés : early intervention  neurodiversity  research agenda  stakeholder consultation Index. décimale : PER Périodiques Résumé : This article outlines a stakeholder-created research agenda to guide future early intervention research for autistic children. We collaborated with 10 autism service providers, 10 parents of individuals with autism, and 10 autistic people across a total of 18 small group and 2 inter-group meetings occurring over 2?years. Together, we synthesized results from (1) these stakeholder workshops and (2) a survey completed by 237 autistic adults, autism providers, caregivers, and autism researchers in the United States. The finalized research agenda includes (1) Guiding Principles, (2) Research Priorities, and (3) Systems Implications. The full version of the early intervention autism research agenda is available in Supplemental Material. In this article, we summarize the main points of the research agenda and discuss unique themes highlighted by stakeholders in considering early autism intervention research. Finally, we highlight the need to include stakeholders in decision-making and consultant positions throughout the research process to align future work most directly and optimally with the goals and needs of the autism community. We have gathered guidance directly from our stakeholders and experiences with Project Stakeholders Engaging in Early Intervention Research (STEER) into a researcher workbook which we hope may facilitate these efforts. This workbook is available in Supplemental Material. Lay abstract In this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material. En ligne : https://dx.doi.org/10.1177/13623613231195743 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda [Texte imprimé et/ou numérique] / Katherine M. WALTON, Auteur ; Alayna R. BOROWY, Auteur ; Rachel A. GORDON, Auteur ; Allison L. WAINER, Auteur . - p.1120-1134. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1120-1134 Mots-clés : early intervention  neurodiversity  research agenda  stakeholder consultation Index. décimale : PER Périodiques Résumé : This article outlines a stakeholder-created research agenda to guide future early intervention research for autistic children. We collaborated with 10 autism service providers, 10 parents of individuals with autism, and 10 autistic people across a total of 18 small group and 2 inter-group meetings occurring over 2?years. Together, we synthesized results from (1) these stakeholder workshops and (2) a survey completed by 237 autistic adults, autism providers, caregivers, and autism researchers in the United States. The finalized research agenda includes (1) Guiding Principles, (2) Research Priorities, and (3) Systems Implications. The full version of the early intervention autism research agenda is available in Supplemental Material. In this article, we summarize the main points of the research agenda and discuss unique themes highlighted by stakeholders in considering early autism intervention research. Finally, we highlight the need to include stakeholders in decision-making and consultant positions throughout the research process to align future work most directly and optimally with the goals and needs of the autism community. We have gathered guidance directly from our stakeholders and experiences with Project Stakeholders Engaging in Early Intervention Research (STEER) into a researcher workbook which we hope may facilitate these efforts. This workbook is available in Supplemental Material. Lay abstract In this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material. En ligne : https://dx.doi.org/10.1177/13623613231195743 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

"It just depends": Parent, teacher, and expert conceptualization of social communication in young autistic children / Katherine M. WALTON in Autism, 28-4 (April 2024)  

Public ISBD [article]  inAutism > 28-4 (April 2024) . - p.920-931 Titre : "It just depends": Parent, teacher, and expert conceptualization of social communication in young autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Katherine M. WALTON, Auteur ; Alayna R. BOROWY, Auteur ; Christopher A. TAYLOR, Auteur Article en page(s) : p.920-931 Langues : Anglais (eng) Mots-clés : autism,focus groups,social communication,stakeholder perspectives Index. décimale : PER Périodiques Résumé : Improving social communication is a frequent goal of early autism services. However, it is unclear whether existing models of social communication align with the perspectives and priorities of key stakeholders, including parents, teachers, and expert clinicians. Stakeholder perspectives on social communication characteristics and priorities for young autistic children were gathered during seven focus groups. Participants included parents (three groups; n = 21), teachers (two groups; n = 8), and experts in early social communication and autism (two groups; n = 14). Content analysis procedures were used to develop and refine a codebook for themes and sub-themes that emerged from the focus group data and to code this data. Qualitative data analysis revealed several themes consistent with existing models of social communication in autism (expressive and receptive communication; social interaction), as well as novel themes related to unconventional communication, the impact of context on social communication, and the role of emotion regulation in social communication. Overall, participants expressed that adequately capturing autistic children?s social communication skills was challenging because autistic social communication is influenced greatly by a number of contextual, relational, motivational, and regulatory factors. These findings provide valuable insight for aligning social communication measurement and support with stakeholder priorities. Lay abstract Improving social communication is often one goal during early autism services. However, researchers do not yet know whether their ideas about which social communication skills should be targeted during services for young autistic children are the same as the goals of autism community members, such as parents, teachers, and expert clinicians. This study used focus groups (meetings of small groups of community members) to ask people from these groups about what aspects of social communication are most important to support in young autistic children. A total of 43 people participated in these focus groups. These groups included parents (three groups; 21 people), teachers (two groups; 8 people), and experts in early social communication and autism (two groups; 14 people). Focus group participants talked about several aspects of social communication that were already familiar to the research team, such as problems with expressive communication, language understanding, and social interaction. However, participants also talked about several parts of social communication that were less familiar to the research team and had usually not been mentioned in previous research. These included (1) considering the value of unusual forms of communication, (2) taking context and setting into account when considering social communication, and (3) how communication and emotion regulation impact one another. The information from these focus groups will be helpful to making sure that researchers and clinicians focus their social communication supports on areas that are most important to parents and teachers. En ligne : https://dx.doi.org/10.1177/13623613231185401 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=525 [article] "It just depends": Parent, teacher, and expert conceptualization of social communication in young autistic children [Texte imprimé et/ou numérique] / Katherine M. WALTON, Auteur ; Alayna R. BOROWY, Auteur ; Christopher A. TAYLOR, Auteur . - p.920-931. Langues : Anglais (eng) in Autism > 28-4 (April 2024) . - p.920-931 Mots-clés : autism,focus groups,social communication,stakeholder perspectives Index. décimale : PER Périodiques Résumé : Improving social communication is a frequent goal of early autism services. However, it is unclear whether existing models of social communication align with the perspectives and priorities of key stakeholders, including parents, teachers, and expert clinicians. Stakeholder perspectives on social communication characteristics and priorities for young autistic children were gathered during seven focus groups. Participants included parents (three groups; n = 21), teachers (two groups; n = 8), and experts in early social communication and autism (two groups; n = 14). Content analysis procedures were used to develop and refine a codebook for themes and sub-themes that emerged from the focus group data and to code this data. Qualitative data analysis revealed several themes consistent with existing models of social communication in autism (expressive and receptive communication; social interaction), as well as novel themes related to unconventional communication, the impact of context on social communication, and the role of emotion regulation in social communication. Overall, participants expressed that adequately capturing autistic children?s social communication skills was challenging because autistic social communication is influenced greatly by a number of contextual, relational, motivational, and regulatory factors. These findings provide valuable insight for aligning social communication measurement and support with stakeholder priorities. Lay abstract Improving social communication is often one goal during early autism services. However, researchers do not yet know whether their ideas about which social communication skills should be targeted during services for young autistic children are the same as the goals of autism community members, such as parents, teachers, and expert clinicians. This study used focus groups (meetings of small groups of community members) to ask people from these groups about what aspects of social communication are most important to support in young autistic children. A total of 43 people participated in these focus groups. These groups included parents (three groups; 21 people), teachers (two groups; 8 people), and experts in early social communication and autism (two groups; 14 people). Focus group participants talked about several aspects of social communication that were already familiar to the research team, such as problems with expressive communication, language understanding, and social interaction. However, participants also talked about several parts of social communication that were less familiar to the research team and had usually not been mentioned in previous research. These included (1) considering the value of unusual forms of communication, (2) taking context and setting into account when considering social communication, and (3) how communication and emotion regulation impact one another. The information from these focus groups will be helpful to making sure that researchers and clinicians focus their social communication supports on areas that are most important to parents and teachers. En ligne : https://dx.doi.org/10.1177/13623613231185401 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=525

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