Centre d'Information et de documentation du CRA Rhône-Alpes
CRA
Informations pratiques
-
Adresse
Centre d'information et de documentation
du CRA Rhône-Alpes
Centre Hospitalier le Vinatier
bât 211
95, Bd Pinel
69678 Bron CedexHoraires
Lundi au Vendredi
9h00-12h00 13h30-16h00Contact
Tél: +33(0)4 37 91 54 65
Mail
Fax: +33(0)4 37 91 54 37
-
Résultat de la recherche
5 recherche sur le mot-clé 'Mixed-methods'
Affiner la recherche Générer le flux rss de la recherche
Partager le résultat de cette recherche Faire une suggestion
Autistic Adults' Experiences of Diagnosis Disclosure / Yunhe HUANG in Journal of Autism and Developmental Disorders, 52-12 (December 2022)
[article]
Titre : Autistic Adults' Experiences of Diagnosis Disclosure Type de document : Texte imprimé et/ou numérique Auteurs : Yunhe HUANG, Auteur ; Ye In Jane HWANG, Auteur ; Samuel R. C. ARNOLD, Auteur ; Lauren P LAWSON, Auteur ; Amanda L. RICHDALE, Auteur ; Julian N. TROLLOR, Auteur Année de publication : 2022 Article en page(s) : p.5301-5307 Langues : Anglais (eng) Mots-clés : Adult Humans Disclosure Autistic Disorder/diagnosis Autism Spectrum Disorder Social Stigma Prejudice Adults Autism Diagnosis Mixed-methods Stigma Index. décimale : PER Périodiques Résumé : As autism is an invisible and often stigmatised condition, disclosing the diagnosis may lead to both support and/or discrimination. This mixed-methods questionnaire study examined autistic adults' experiences of disclosure in various contexts. The sample consisted of 393 participants aged 17-83Â years from two longitudinal surveys. Almost all participants disclosed their diagnosis to someone, most commonly to friends. A significant minority of participants studying and/or working at the time had not disclosed to their education provider/employer. Content analysis of open-ended responses showed participants desired to gain understanding and support from disclosure but feared prejudice. While some received support, others encountered dismissiveness and misunderstanding. Findings highlight the need to improve autism understanding and reduce stigma within and beyond educational and employment contexts. En ligne : http://dx.doi.org/10.1007/s10803-021-05384-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489
in Journal of Autism and Developmental Disorders > 52-12 (December 2022) . - p.5301-5307[article] Autistic Adults' Experiences of Diagnosis Disclosure [Texte imprimé et/ou numérique] / Yunhe HUANG, Auteur ; Ye In Jane HWANG, Auteur ; Samuel R. C. ARNOLD, Auteur ; Lauren P LAWSON, Auteur ; Amanda L. RICHDALE, Auteur ; Julian N. TROLLOR, Auteur . - 2022 . - p.5301-5307.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-12 (December 2022) . - p.5301-5307
Mots-clés : Adult Humans Disclosure Autistic Disorder/diagnosis Autism Spectrum Disorder Social Stigma Prejudice Adults Autism Diagnosis Mixed-methods Stigma Index. décimale : PER Périodiques Résumé : As autism is an invisible and often stigmatised condition, disclosing the diagnosis may lead to both support and/or discrimination. This mixed-methods questionnaire study examined autistic adults' experiences of disclosure in various contexts. The sample consisted of 393 participants aged 17-83Â years from two longitudinal surveys. Almost all participants disclosed their diagnosis to someone, most commonly to friends. A significant minority of participants studying and/or working at the time had not disclosed to their education provider/employer. Content analysis of open-ended responses showed participants desired to gain understanding and support from disclosure but feared prejudice. While some received support, others encountered dismissiveness and misunderstanding. Findings highlight the need to improve autism understanding and reduce stigma within and beyond educational and employment contexts. En ligne : http://dx.doi.org/10.1007/s10803-021-05384-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489 Choose your Own Adventure: Pathways to Adulthood Autism Diagnosis in Australia / Yunhe HUANG in Journal of Autism and Developmental Disorders, 52-7 (July 2022)
[article]
Titre : Choose your Own Adventure: Pathways to Adulthood Autism Diagnosis in Australia Type de document : Texte imprimé et/ou numérique Auteurs : Yunhe HUANG, Auteur ; Samuel R. C. ARNOLD, Auteur ; Kitty-Rose FOLEY, Auteur ; Julian N. TROLLOR, Auteur Article en page(s) : p.2984-2996 Langues : Anglais (eng) Mots-clés : Adult Australia Autism Spectrum Disorder/diagnosis/psychology Autistic Disorder/diagnosis/psychology Communication Humans Surveys and Questionnaires Adults Autism Diagnosis Mixed-methods Index. décimale : PER Périodiques Résumé : Pathways to diagnosis in adulthood are poorly understood. Even less is known about undiagnosed adults who believe they may be autistic. This mixed-methods online survey examined adults' journeys from initial concern to receiving the diagnosis. Quantitative findings showed the diagnostic process to be highly heterogeneous. Qualitative analysis identified desires for explanation and support as motives for seeking diagnosis. Cost and fear of not being taken seriously were major barriers, echoed by qualitative responses that described the process as confusing, expensive and time-consuming. While most participants were satisfied with the diagnosis, their emotional reactions were complex. Findings support the need for thoroughly implementing national guidelines, and for improved knowledge and communication in mainstream clinicians encountering clients with possible autism characteristics. En ligne : http://dx.doi.org/10.1007/s10803-021-05169-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477
in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.2984-2996[article] Choose your Own Adventure: Pathways to Adulthood Autism Diagnosis in Australia [Texte imprimé et/ou numérique] / Yunhe HUANG, Auteur ; Samuel R. C. ARNOLD, Auteur ; Kitty-Rose FOLEY, Auteur ; Julian N. TROLLOR, Auteur . - p.2984-2996.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.2984-2996
Mots-clés : Adult Australia Autism Spectrum Disorder/diagnosis/psychology Autistic Disorder/diagnosis/psychology Communication Humans Surveys and Questionnaires Adults Autism Diagnosis Mixed-methods Index. décimale : PER Périodiques Résumé : Pathways to diagnosis in adulthood are poorly understood. Even less is known about undiagnosed adults who believe they may be autistic. This mixed-methods online survey examined adults' journeys from initial concern to receiving the diagnosis. Quantitative findings showed the diagnostic process to be highly heterogeneous. Qualitative analysis identified desires for explanation and support as motives for seeking diagnosis. Cost and fear of not being taken seriously were major barriers, echoed by qualitative responses that described the process as confusing, expensive and time-consuming. While most participants were satisfied with the diagnosis, their emotional reactions were complex. Findings support the need for thoroughly implementing national guidelines, and for improved knowledge and communication in mainstream clinicians encountering clients with possible autism characteristics. En ligne : http://dx.doi.org/10.1007/s10803-021-05169-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477 Working with Children with Autism Spectrum Disorder in a Medical Setting: Insights from Certified Child Life Specialists / Emily J JENSEN in Journal of Autism and Developmental Disorders, 50-1 (January 2020)
[article]
Titre : Working with Children with Autism Spectrum Disorder in a Medical Setting: Insights from Certified Child Life Specialists Type de document : Texte imprimé et/ou numérique Auteurs : Emily J JENSEN, Auteur ; Cheryl GEISTHARDT, Auteur ; Pamela A. SARIGIANI, Auteur Article en page(s) : p.189-198 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder Child life specialists Mixed-methods Pediatric medical care Index. décimale : PER Périodiques Résumé : This study aimed to gain an understanding of Certified Child Life Specialists' (CCLS) experiences with and suggestions for working with children with autism spectrum disorder (ASD) in a medical setting. Using a mixed-method design, 118 CCLS completed an online survey and 16 participated in follow-up interviews. Participants believed many medical professionals, including CCLS, are not adequately prepared to work with children with ASD, negatively impacting quality of care. Participants emphasized that outcomes are best for children with ASD when parents and medical staff collaborate to meet the unique needs of each child. CCLS reported working with children with ASD can provide insights for enhancing the quality of care for all children. Participants' suggestions for training and resource development are discussed. En ligne : http://dx.doi.org/10.1007/s10803-019-04245-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414
in Journal of Autism and Developmental Disorders > 50-1 (January 2020) . - p.189-198[article] Working with Children with Autism Spectrum Disorder in a Medical Setting: Insights from Certified Child Life Specialists [Texte imprimé et/ou numérique] / Emily J JENSEN, Auteur ; Cheryl GEISTHARDT, Auteur ; Pamela A. SARIGIANI, Auteur . - p.189-198.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 50-1 (January 2020) . - p.189-198
Mots-clés : Autism spectrum disorder Child life specialists Mixed-methods Pediatric medical care Index. décimale : PER Périodiques Résumé : This study aimed to gain an understanding of Certified Child Life Specialists' (CCLS) experiences with and suggestions for working with children with autism spectrum disorder (ASD) in a medical setting. Using a mixed-method design, 118 CCLS completed an online survey and 16 participated in follow-up interviews. Participants believed many medical professionals, including CCLS, are not adequately prepared to work with children with ASD, negatively impacting quality of care. Participants emphasized that outcomes are best for children with ASD when parents and medical staff collaborate to meet the unique needs of each child. CCLS reported working with children with ASD can provide insights for enhancing the quality of care for all children. Participants' suggestions for training and resource development are discussed. En ligne : http://dx.doi.org/10.1007/s10803-019-04245-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414 A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 1, quantitative findings / Umar TOSEEB in Autism, 27-1 (January 2023)
[article]
Titre : A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 1, quantitative findings Type de document : Texte imprimé et/ou numérique Auteurs : Umar TOSEEB, Auteur ; Kathryn ASBURY, Auteur Article en page(s) : p.105-116 Langues : Anglais (eng) Mots-clés : autism COVID-19 longitudinal mental health mixed-methods qualitative quantitative special educational needs Index. décimale : PER Périodiques Résumé : Autistic children and adolescents and their parents are likely to have been disproportionally affected during the COVID-19 pandemic. There has been little focus on how the mental health of these vulnerable families developed during the pandemic and how it compared to those with other special educational needs and disabilities. Questionnaires were completed by a maximum of 527 parents/carers about their own and their child’s mental health at one or more time points between 23 March 2020 (at the onset of the first lockdown) and 10 October 2020 (when schools fully reopened for face-to-face teaching). Multi-level regression models were fitted to the data. Autistic young people had more depression and anxiety symptoms compared to young people with other special educational needs and disabilities throughout the study period. As lockdown progressed and schools subsequently reopened for face-to-face teaching, anxiety levels decreased for young people with special educational needs and disabilities but not for autistic young people, whose anxiety levels remained stable throughout. Depression symptoms, however, remained stable for both groups during this period as did parents’/carers’ psychological distress and well-being. These findings shed new light on the likely disproportionate effect of the COVID-19 pandemic on anxiety levels in autistic young people. Lay abstract Autistic children and adolescents, and their parents/carers, tend to experience more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. The rapid change in society as a result of the COVID-19 pandemic is likely to have disproportionately affected autistic young people and their parents/carers. We investigated how the mental health of autistic young people, and their parents/carers, developed during the first lockdown in the United Kingdom and how it changed once schools fully reopened for face-to-face teaching approximately 6 months later. Parents/carers completed online standardised questionnaires about their own and their child’s mental health at four time points between March 2020 and October 2020. We found that, throughout this period, autistic young people experienced more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. Anxiety levels decreased as lockdown progressed and schools reopened for face-to-face teaching but only for those with other special educational needs and disabilities. For autistic young people, both anxiety and depression symptoms remained high throughout. There were no differences in the mental health of parents/carers of autistic children compared to those with other special educational needs and disabilities. These findings suggest that the mental health of autistic children and adolescents is likely to have been disproportionately affected during and after the first lockdown in the United Kingdom. In the second part of this article (Asbury & Toseeb, 2022), we attempt to explain these trends using qualitative data provided by parents during the same period. En ligne : http://dx.doi.org/10.1177/13623613221082715 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491
in Autism > 27-1 (January 2023) . - p.105-116[article] A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 1, quantitative findings [Texte imprimé et/ou numérique] / Umar TOSEEB, Auteur ; Kathryn ASBURY, Auteur . - p.105-116.
Langues : Anglais (eng)
in Autism > 27-1 (January 2023) . - p.105-116
Mots-clés : autism COVID-19 longitudinal mental health mixed-methods qualitative quantitative special educational needs Index. décimale : PER Périodiques Résumé : Autistic children and adolescents and their parents are likely to have been disproportionally affected during the COVID-19 pandemic. There has been little focus on how the mental health of these vulnerable families developed during the pandemic and how it compared to those with other special educational needs and disabilities. Questionnaires were completed by a maximum of 527 parents/carers about their own and their child’s mental health at one or more time points between 23 March 2020 (at the onset of the first lockdown) and 10 October 2020 (when schools fully reopened for face-to-face teaching). Multi-level regression models were fitted to the data. Autistic young people had more depression and anxiety symptoms compared to young people with other special educational needs and disabilities throughout the study period. As lockdown progressed and schools subsequently reopened for face-to-face teaching, anxiety levels decreased for young people with special educational needs and disabilities but not for autistic young people, whose anxiety levels remained stable throughout. Depression symptoms, however, remained stable for both groups during this period as did parents’/carers’ psychological distress and well-being. These findings shed new light on the likely disproportionate effect of the COVID-19 pandemic on anxiety levels in autistic young people. Lay abstract Autistic children and adolescents, and their parents/carers, tend to experience more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. The rapid change in society as a result of the COVID-19 pandemic is likely to have disproportionately affected autistic young people and their parents/carers. We investigated how the mental health of autistic young people, and their parents/carers, developed during the first lockdown in the United Kingdom and how it changed once schools fully reopened for face-to-face teaching approximately 6 months later. Parents/carers completed online standardised questionnaires about their own and their child’s mental health at four time points between March 2020 and October 2020. We found that, throughout this period, autistic young people experienced more symptoms of anxiety and depression compared to those with other special educational needs and disabilities. Anxiety levels decreased as lockdown progressed and schools reopened for face-to-face teaching but only for those with other special educational needs and disabilities. For autistic young people, both anxiety and depression symptoms remained high throughout. There were no differences in the mental health of parents/carers of autistic children compared to those with other special educational needs and disabilities. These findings suggest that the mental health of autistic children and adolescents is likely to have been disproportionately affected during and after the first lockdown in the United Kingdom. In the second part of this article (Asbury & Toseeb, 2022), we attempt to explain these trends using qualitative data provided by parents during the same period. En ligne : http://dx.doi.org/10.1177/13623613221082715 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491 A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 2, qualitative findings / Kathryn ASBURY in Autism, 27-1 (January 2023)
[article]
Titre : A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 2, qualitative findings Type de document : Texte imprimé et/ou numérique Auteurs : Kathryn ASBURY, Auteur ; Umar TOSEEB, Auteur Article en page(s) : p.188-199 Langues : Anglais (eng) Mots-clés : autism COVID-19 longitudinal mental health mixed-methods qualitative quantitative special educational needs Index. décimale : PER Périodiques Résumé : In Part 1 of this UK-based study, across four timepoints between March and October 2020, autistic children and young people showed higher levels of parent-reported depression and anxiety symptoms than those with other special educational needs and disabilities. In this study, we draw on qualitative data from 478 parents/carers of autistic pupils and those with other special educational needs and disabilities to conduct a longitudinal qualitative content analysis examining stability and change in the mental health of these young people, and their parents/carers, during the first 6 months of the COVID-19 pandemic. Worry and psychological distress were dominant categories at all timepoints and we noted that, in line with quantitative findings, worry in autistic pupils stayed stable over time but decreased for those with other special educational needs and disabilities. The third dominant category was wellbeing and we saw evidence that removing demands, especially the demand to attend school, was a driver of wellbeing for a significant minority of pupils, particularly autistic pupils, and their parents/carers. Overall, we observed no differences in mental health experiences between the two groups of parents, also mirroring quantitative findings. Lay abstract We know that autistic children and young people, and their caregivers, are at increased risk of mental ill health. We asked whether the first 6 months of COVID-19 exacerbated that risk, and whether the implications were different for autistic pupils and their caregivers, than for those with other special educational needs and difficulties. In a linked paper, we found that caregivers of autistic pupils reported higher levels of depression and anxiety symptoms in their children than parents of children with other special educational needs and difficulties (Toseeb & Asbury, 2022). For pupils with other special educational needs and difficulties, their parent-reported anxiety symptoms eased over time while remaining high throughout for autistic pupils. There were no differences in mental health and wellbeing between caregivers of autistic pupils and those with other special educational needs and difficulties. Here, we used parents’ written descriptions of their own and their child’s mental health during the first 6 months of COVID-19 to explore these linked findings in greater depth. We identified strong evidence of worry and distress for all, but most prominently autistic children and young people. Our finding that worry and distress declined over time for pupils with other special educational needs and difficulties, but not for autistic pupils, was supported and we observed a few differences between caregivers. We also found evidence of wellbeing throughout the sample, and examples of some (mainly autistic) pupils benefitting from a reduction in demands (e.g. going to school). This has implications for our understanding of the school experience for autistic pupils. Findings suggest that the mental health of autistic children and young people may have been disproportionately affected during the first 6 months of COVID-19 and that careful consideration of optimal support, from both health and education perspectives, is vital. En ligne : http://dx.doi.org/10.1177/13623613221086997 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491
in Autism > 27-1 (January 2023) . - p.188-199[article] A longitudinal study of the mental health of autistic children and adolescents and their parents during COVID-19: Part 2, qualitative findings [Texte imprimé et/ou numérique] / Kathryn ASBURY, Auteur ; Umar TOSEEB, Auteur . - p.188-199.
Langues : Anglais (eng)
in Autism > 27-1 (January 2023) . - p.188-199
Mots-clés : autism COVID-19 longitudinal mental health mixed-methods qualitative quantitative special educational needs Index. décimale : PER Périodiques Résumé : In Part 1 of this UK-based study, across four timepoints between March and October 2020, autistic children and young people showed higher levels of parent-reported depression and anxiety symptoms than those with other special educational needs and disabilities. In this study, we draw on qualitative data from 478 parents/carers of autistic pupils and those with other special educational needs and disabilities to conduct a longitudinal qualitative content analysis examining stability and change in the mental health of these young people, and their parents/carers, during the first 6 months of the COVID-19 pandemic. Worry and psychological distress were dominant categories at all timepoints and we noted that, in line with quantitative findings, worry in autistic pupils stayed stable over time but decreased for those with other special educational needs and disabilities. The third dominant category was wellbeing and we saw evidence that removing demands, especially the demand to attend school, was a driver of wellbeing for a significant minority of pupils, particularly autistic pupils, and their parents/carers. Overall, we observed no differences in mental health experiences between the two groups of parents, also mirroring quantitative findings. Lay abstract We know that autistic children and young people, and their caregivers, are at increased risk of mental ill health. We asked whether the first 6 months of COVID-19 exacerbated that risk, and whether the implications were different for autistic pupils and their caregivers, than for those with other special educational needs and difficulties. In a linked paper, we found that caregivers of autistic pupils reported higher levels of depression and anxiety symptoms in their children than parents of children with other special educational needs and difficulties (Toseeb & Asbury, 2022). For pupils with other special educational needs and difficulties, their parent-reported anxiety symptoms eased over time while remaining high throughout for autistic pupils. There were no differences in mental health and wellbeing between caregivers of autistic pupils and those with other special educational needs and difficulties. Here, we used parents’ written descriptions of their own and their child’s mental health during the first 6 months of COVID-19 to explore these linked findings in greater depth. We identified strong evidence of worry and distress for all, but most prominently autistic children and young people. Our finding that worry and distress declined over time for pupils with other special educational needs and difficulties, but not for autistic pupils, was supported and we observed a few differences between caregivers. We also found evidence of wellbeing throughout the sample, and examples of some (mainly autistic) pupils benefitting from a reduction in demands (e.g. going to school). This has implications for our understanding of the school experience for autistic pupils. Findings suggest that the mental health of autistic children and young people may have been disproportionately affected during the first 6 months of COVID-19 and that careful consideration of optimal support, from both health and education perspectives, is vital. En ligne : http://dx.doi.org/10.1177/13623613221086997 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491