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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 "That he won't experience life like he should": Exploring worries of family caregivers of transition-age autistic youth / Grazia DIPIERRO ; Caroline Duke CHAIKIN ; Rita OBEID ; Kristen A. BERG ; Karen J. ISHLER in Research in Autism Spectrum Disorders, 109 (November 2023)
[article]
Titre : "That he won't experience life like he should": Exploring worries of family caregivers of transition-age autistic youth Type de document : Texte imprimé et/ou numérique Auteurs : Grazia DIPIERRO, Auteur ; Caroline Duke CHAIKIN, Auteur ; Rita OBEID, Auteur ; Kristen A. BERG, Auteur ; Karen J. ISHLER, Auteur Article en page(s) : 102283 Langues : Anglais (eng) Mots-clés : Family caregivers Caregiver burden Worry Transition to adulthood Quantitative Qualitative Index. décimale : PER Périodiques Résumé : Background Caregiver (CG) worry, a dimension of CG burden, has rarely been explored in CGs of transition-aged autistic youth. The present study investigated CG, youth, and service characteristics as potential predictors of CG worry and explored expressed concerns from CGs about their autistic youth and their care. Method Data were drawn from a study of 174 family CGs of transition-age autistic youth (age 16-30 years), living in a midwestern metropolitan area. Using a CG worries scale, CGs rated eight worries (e.g., worry about youth?s safety, etc.) experienced in the past six months. An OLS regression model of CG worry focused on predictors of CG characteristics (age, health, financial burden, involvement in youth?s care), youth characteristics (age, social engagement, adaptive functioning, problematic behavior) and service characteristics (access barriers and engagement in transition planning). CG responses to an open-ended question about their greatest worry regarding the youth and their care were analyzed thematically. Results CGs were mostly middle-aged mothers, caring for predominantly male (71.8%) ASD youth whose average age was 21. Regression models indicated that CG worry was predicted by problematic behaviors and barriers to accessing services. The expressed CG worries were grouped into four themes, including youth reliance on family CGs, possibilities for the youth?s future, youth relationships, and support for youth. Conclusions These findings support the need for improved access to services for transition-aged youth and raise awareness of the need for potential services and interventions to help families manage various worries during this time. En ligne : https://doi.org/10.1016/j.rasd.2023.102283 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518
in Research in Autism Spectrum Disorders > 109 (November 2023) . - 102283[article] "That he won't experience life like he should": Exploring worries of family caregivers of transition-age autistic youth [Texte imprimé et/ou numérique] / Grazia DIPIERRO, Auteur ; Caroline Duke CHAIKIN, Auteur ; Rita OBEID, Auteur ; Kristen A. BERG, Auteur ; Karen J. ISHLER, Auteur . - 102283.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 109 (November 2023) . - 102283
Mots-clés : Family caregivers Caregiver burden Worry Transition to adulthood Quantitative Qualitative Index. décimale : PER Périodiques Résumé : Background Caregiver (CG) worry, a dimension of CG burden, has rarely been explored in CGs of transition-aged autistic youth. The present study investigated CG, youth, and service characteristics as potential predictors of CG worry and explored expressed concerns from CGs about their autistic youth and their care. Method Data were drawn from a study of 174 family CGs of transition-age autistic youth (age 16-30 years), living in a midwestern metropolitan area. Using a CG worries scale, CGs rated eight worries (e.g., worry about youth?s safety, etc.) experienced in the past six months. An OLS regression model of CG worry focused on predictors of CG characteristics (age, health, financial burden, involvement in youth?s care), youth characteristics (age, social engagement, adaptive functioning, problematic behavior) and service characteristics (access barriers and engagement in transition planning). CG responses to an open-ended question about their greatest worry regarding the youth and their care were analyzed thematically. Results CGs were mostly middle-aged mothers, caring for predominantly male (71.8%) ASD youth whose average age was 21. Regression models indicated that CG worry was predicted by problematic behaviors and barriers to accessing services. The expressed CG worries were grouped into four themes, including youth reliance on family CGs, possibilities for the youth?s future, youth relationships, and support for youth. Conclusions These findings support the need for improved access to services for transition-aged youth and raise awareness of the need for potential services and interventions to help families manage various worries during this time. En ligne : https://doi.org/10.1016/j.rasd.2023.102283 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518 "We are exhausted, worn out, and broken": Understanding the impact of service satisfaction on caregiver well-being / Janet MCLAUGHLIN ; Margaret SCHNEIDER in Autism Research, 16-11 (November 2023)
[article]
Titre : "We are exhausted, worn out, and broken": Understanding the impact of service satisfaction on caregiver well-being Type de document : Texte imprimé et/ou numérique Auteurs : Janet MCLAUGHLIN, Auteur ; Margaret SCHNEIDER, Auteur Article en page(s) : p.2198-2207 Langues : Anglais (eng) Mots-clés : autism policy qualitative quantitative service satisfaction well-being Index. décimale : PER Périodiques Résumé : Abstract Few studies exist that have examined the impact of service-related factors and system-level disruptions (i.e., the pandemic) on families of autistic children in Canada using large sample sizes. To address this gap, the goal of this research was to examine the impact of satisfaction with autism services on caregiver stress, controlling for important demographic variables, such as family income, marital status, and child level of support needs. The impact of navigating and accessing services on parent well-being was also explored. A total of 1810 primary caregivers of autistic children or youth living in Ontario, Canada completed a survey with both closed- and open-ended questions in the summer of 2021. A hierarchical multiple regression was conducted to examine the impact of satisfaction with autism services on caregiver stress. Open-ended responses on the survey from a subset of the sample (n?=?637) were coded using thematic analysis to understand the impact of navigating and accessing services on parent well-being. Satisfaction with services significantly predicted caregiver stress after controlling for marital support, family income, and child level of support needs. Qualitative analysis revealed impacts of navigating and accessing services in three areas: (1) Physical, (2) Emotional/Psychological, and (3) Financial Well-being. Understanding parent perceptions of satisfaction with services can shed light on strategies for improving services that support parent well-being. En ligne : https://doi.org/10.1002/aur.3024 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=517
in Autism Research > 16-11 (November 2023) . - p.2198-2207[article] "We are exhausted, worn out, and broken": Understanding the impact of service satisfaction on caregiver well-being [Texte imprimé et/ou numérique] / Janet MCLAUGHLIN, Auteur ; Margaret SCHNEIDER, Auteur . - p.2198-2207.
Langues : Anglais (eng)
in Autism Research > 16-11 (November 2023) . - p.2198-2207
Mots-clés : autism policy qualitative quantitative service satisfaction well-being Index. décimale : PER Périodiques Résumé : Abstract Few studies exist that have examined the impact of service-related factors and system-level disruptions (i.e., the pandemic) on families of autistic children in Canada using large sample sizes. To address this gap, the goal of this research was to examine the impact of satisfaction with autism services on caregiver stress, controlling for important demographic variables, such as family income, marital status, and child level of support needs. The impact of navigating and accessing services on parent well-being was also explored. A total of 1810 primary caregivers of autistic children or youth living in Ontario, Canada completed a survey with both closed- and open-ended questions in the summer of 2021. A hierarchical multiple regression was conducted to examine the impact of satisfaction with autism services on caregiver stress. Open-ended responses on the survey from a subset of the sample (n?=?637) were coded using thematic analysis to understand the impact of navigating and accessing services on parent well-being. Satisfaction with services significantly predicted caregiver stress after controlling for marital support, family income, and child level of support needs. Qualitative analysis revealed impacts of navigating and accessing services in three areas: (1) Physical, (2) Emotional/Psychological, and (3) Financial Well-being. Understanding parent perceptions of satisfaction with services can shed light on strategies for improving services that support parent well-being. En ligne : https://doi.org/10.1002/aur.3024 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=517