91 recherche sur le mot-clé 'Caregivers'

The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review / V. LEE in Autism Research, 14-12 (December 2021)  

Public ISBD [article]  inAutism Research > 14-12 (December 2021) . - p.2477-2494 Titre : The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review Type de document : Texte imprimé et/ou numérique Auteurs : V. LEE, Auteur ; Carly ALBAUM, Auteur ; Paula TABLON-MODICA, Auteur ; F. AHMAD, Auteur ; J. W. GORTER, Auteur ; N. KHANLOU, Auteur ; C. MCMORRIS, Auteur ; J. LAI, Auteur ; C. HARRISON, Auteur ; T. HEDLEY, Auteur ; P. JOHNSTON, Auteur ; C. PUTTERMAN, Auteur ; M. SPOELSTRA, Auteur ; J. A. WEISS, Auteur Article en page(s) : p.2477-2494 Langues : Anglais (eng) Mots-clés : Adolescent  Autism Spectrum Disorder  Autistic Disorder  Covid-19  Caregivers  Child  Communicable Disease Control  Humans  Mental Health  Pandemics  SARS-CoV-2  Covid  autism  caregivers  literature review  mental health Index. décimale : PER Périodiques Résumé : Caregivers and families of autistic people have experienced stress and increase in demands due to the COVID-19 pandemic that may have long-term negative consequences for both their own and their children's mental health. A scoping review was conducted to identify pandemic related demands experienced by caregivers and families of autistic children and youth. The review also consolidated information on coping strategies and parenting-related guidelines that have emerged to help parents meet these demands. Search strategies were approved by a research librarian and were conducted in peer-reviewed and gray literature databases between May 2020 and February 2021. Additional resources were solicited through author networks and social media. All articles were published between December 2019 and February 2021. Article summaries were charted, and a thematic analysis was conducted with confirmation of findings with our knowledge users. Twenty-three published articles and 14 pieces of gray literature were included in the review. The majority of articles characterized and highlighted the increase in demands on caregivers of autistic children and youth during the pandemic globally. Both quantitative and qualitative studies suggest that parents have experienced an increase in stress and mental health-related symptoms during lockdown measures. Findings suggest that families are employing coping strategies, but there no evidence-based supports were identified. The review highlighted the potential long-term impact of prolonged exposure to increasing demands on the mental health and wellbeing of caregivers and families of autistic people, and pointed to a need for the rapid development and evaluation of flexible and timely support programs. LAY SUMMARY: Caregivers and families of autistic children and youth have faced increased demands due to pandemic-related lockdown measures. We reviewed the literature to outline sources of stress, links to their influence on caregiver mental health, and if support programs have emerged to help them. Our findings suggest a number of demands have increased caregivers' risk to mental health challenges, and their potential impact on family wellbeing. Ongoing development of evidence-based supports of all families of autistic children and youth are needed. En ligne : http://dx.doi.org/10.1002/aur.2616 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=450 [article] The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review [Texte imprimé et/ou numérique] / V. LEE, Auteur ; Carly ALBAUM, Auteur ; Paula TABLON-MODICA, Auteur ; F. AHMAD, Auteur ; J. W. GORTER, Auteur ; N. KHANLOU, Auteur ; C. MCMORRIS, Auteur ; J. LAI, Auteur ; C. HARRISON, Auteur ; T. HEDLEY, Auteur ; P. JOHNSTON, Auteur ; C. PUTTERMAN, Auteur ; M. SPOELSTRA, Auteur ; J. A. WEISS, Auteur . - p.2477-2494. Langues : Anglais (eng) in Autism Research > 14-12 (December 2021) . - p.2477-2494 Mots-clés : Adolescent  Autism Spectrum Disorder  Autistic Disorder  Covid-19  Caregivers  Child  Communicable Disease Control  Humans  Mental Health  Pandemics  SARS-CoV-2  Covid  autism  caregivers  literature review  mental health Index. décimale : PER Périodiques Résumé : Caregivers and families of autistic people have experienced stress and increase in demands due to the COVID-19 pandemic that may have long-term negative consequences for both their own and their children's mental health. A scoping review was conducted to identify pandemic related demands experienced by caregivers and families of autistic children and youth. The review also consolidated information on coping strategies and parenting-related guidelines that have emerged to help parents meet these demands. Search strategies were approved by a research librarian and were conducted in peer-reviewed and gray literature databases between May 2020 and February 2021. Additional resources were solicited through author networks and social media. All articles were published between December 2019 and February 2021. Article summaries were charted, and a thematic analysis was conducted with confirmation of findings with our knowledge users. Twenty-three published articles and 14 pieces of gray literature were included in the review. The majority of articles characterized and highlighted the increase in demands on caregivers of autistic children and youth during the pandemic globally. Both quantitative and qualitative studies suggest that parents have experienced an increase in stress and mental health-related symptoms during lockdown measures. Findings suggest that families are employing coping strategies, but there no evidence-based supports were identified. The review highlighted the potential long-term impact of prolonged exposure to increasing demands on the mental health and wellbeing of caregivers and families of autistic people, and pointed to a need for the rapid development and evaluation of flexible and timely support programs. LAY SUMMARY: Caregivers and families of autistic children and youth have faced increased demands due to pandemic-related lockdown measures. We reviewed the literature to outline sources of stress, links to their influence on caregiver mental health, and if support programs have emerged to help them. Our findings suggest a number of demands have increased caregivers' risk to mental health challenges, and their potential impact on family wellbeing. Ongoing development of evidence-based supports of all families of autistic children and youth are needed. En ligne : http://dx.doi.org/10.1002/aur.2616 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=450

Caregivers’ knowledge of autism in a local peri-urban community of Nepal: A cross-sectional study in Kirtipur, Kathmandu / Rena SHRESTHA in Research in Autism Spectrum Disorders, 80 (February 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 80 (February 2021) . - p.101696 Titre : Caregivers’ knowledge of autism in a local peri-urban community of Nepal: A cross-sectional study in Kirtipur, Kathmandu Type de document : Texte imprimé et/ou numérique Auteurs : Rena SHRESTHA, Auteur ; Cheryl DISSANAYAKE, Auteur ; Josephine BARBARO, Auteur Article en page(s) : p.101696 Langues : Anglais (eng) Mots-clés : Autism  Knowledge  Caregivers  Nepal Index. décimale : PER Périodiques Résumé : Early markers of autism emerge during the first two years of life with a reliable diagnosis possible by 24 months of age. Caregivers’ knowledge about autism is crucial to facilitate the early identification of autism. However, research on caregivers’ knowledge of autism in low- and middle-income countries (LMICs) is scarce. The current study examined Nepalese caregivers’ knowledge about autism and potential differences in knowledge as a consequence of demographic characteristics. A population-based cross-sectional survey was conducted with 1895 caregivers (Mean age = 28 years, SD = 5.2) with children between 11–30 months of age in Kirtipur Municipality in Kathmandu, Nepal. Although Nepalese caregivers showed strong knowledge on early social attention and communication behaviours in infants/toddlers, only one-fourth reported any knowledge about autism. Moreover, knowledge on autism differed significantly by caregivers’ age, education and caste/ethnicity. Caregivers over 25 years of age, with more than secondary education and belonging to the upper caste and advantaged groups, had more knowledge about autism. The significant lack of knowledge regarding autism amongst Nepalese caregivers indicates the need to raise awareness, targeting caregivers from all ages, educational levels and caste/ethnic groups, to facilitate early recognition of autism. En ligne : https://doi.org/10.1016/j.rasd.2020.101696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438 [article] Caregivers’ knowledge of autism in a local peri-urban community of Nepal: A cross-sectional study in Kirtipur, Kathmandu [Texte imprimé et/ou numérique] / Rena SHRESTHA, Auteur ; Cheryl DISSANAYAKE, Auteur ; Josephine BARBARO, Auteur . - p.101696. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 80 (February 2021) . - p.101696 Mots-clés : Autism  Knowledge  Caregivers  Nepal Index. décimale : PER Périodiques Résumé : Early markers of autism emerge during the first two years of life with a reliable diagnosis possible by 24 months of age. Caregivers’ knowledge about autism is crucial to facilitate the early identification of autism. However, research on caregivers’ knowledge of autism in low- and middle-income countries (LMICs) is scarce. The current study examined Nepalese caregivers’ knowledge about autism and potential differences in knowledge as a consequence of demographic characteristics. A population-based cross-sectional survey was conducted with 1895 caregivers (Mean age = 28 years, SD = 5.2) with children between 11–30 months of age in Kirtipur Municipality in Kathmandu, Nepal. Although Nepalese caregivers showed strong knowledge on early social attention and communication behaviours in infants/toddlers, only one-fourth reported any knowledge about autism. Moreover, knowledge on autism differed significantly by caregivers’ age, education and caste/ethnicity. Caregivers over 25 years of age, with more than secondary education and belonging to the upper caste and advantaged groups, had more knowledge about autism. The significant lack of knowledge regarding autism amongst Nepalese caregivers indicates the need to raise awareness, targeting caregivers from all ages, educational levels and caste/ethnic groups, to facilitate early recognition of autism. En ligne : https://doi.org/10.1016/j.rasd.2020.101696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438

Factors Contributing to Psychological Ill-Effects and Resilience of Caregivers of Children with Developmental Disabilities During a Nation-wide Lockdown During the COVID-19 Pandemic / Tammy S. H. LIM in Journal of Autism and Developmental Disorders, 52-7 (July 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3015-3025 Titre : Factors Contributing to Psychological Ill-Effects and Resilience of Caregivers of Children with Developmental Disabilities During a Nation-wide Lockdown During the COVID-19 Pandemic Type de document : Texte imprimé et/ou numérique Auteurs : Tammy S. H. LIM, Auteur ; Mae Yue TAN, Auteur ; Ramkumar AISHWORIYA, Auteur ; Ying Qi KANG, Auteur ; Magdalena Yvonne KOH, Auteur ; Liang SHEN, Auteur ; Shang Chee CHONG, Auteur Article en page(s) : p.3015-3025 Langues : Anglais (eng) Mots-clés : Anxiety/epidemiology/psychology  Autism Spectrum Disorder  Covid-19  Caregivers/psychology  Child  Communicable Disease Control  Depression/epidemiology/psychology  Developmental Disabilities/epidemiology  Humans  Pandemics  Resilience, Psychological  Stress, Psychological/epidemiology/psychology  Anxiety  Caregivers  Depression  Developmental disability  Resilience Index. décimale : PER Périodiques Résumé : We evaluated factors affecting psychological ill-effects and resilience of caregivers of children with developmental disabilities during the coronavirus pandemic. Depression, Anxiety, and Stress Scales (DASS-21) and Connor-Davidson Resilience Scale 25-item were administered. Logistic regression was used to identify factors associated with psychological ill-effects and resilience. DASS-21 depression, anxiety and stress scores were high; these were associated with difficulties with infection control measures, autism diagnosis, and need for early intervention services. For caregivers of children with ASD, our DASS-21 scores were significantly higher than non-pandemic scores locally and in other Asian sites. Resilience scores correlated inversely with DASS-21 scores. Targeted support to selected at-risk caregivers and improving resilience can help their coping. En ligne : http://dx.doi.org/10.1007/s10803-021-05180-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477 [article] Factors Contributing to Psychological Ill-Effects and Resilience of Caregivers of Children with Developmental Disabilities During a Nation-wide Lockdown During the COVID-19 Pandemic [Texte imprimé et/ou numérique] / Tammy S. H. LIM, Auteur ; Mae Yue TAN, Auteur ; Ramkumar AISHWORIYA, Auteur ; Ying Qi KANG, Auteur ; Magdalena Yvonne KOH, Auteur ; Liang SHEN, Auteur ; Shang Chee CHONG, Auteur . - p.3015-3025. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3015-3025 Mots-clés : Anxiety/epidemiology/psychology  Autism Spectrum Disorder  Covid-19  Caregivers/psychology  Child  Communicable Disease Control  Depression/epidemiology/psychology  Developmental Disabilities/epidemiology  Humans  Pandemics  Resilience, Psychological  Stress, Psychological/epidemiology/psychology  Anxiety  Caregivers  Depression  Developmental disability  Resilience Index. décimale : PER Périodiques Résumé : We evaluated factors affecting psychological ill-effects and resilience of caregivers of children with developmental disabilities during the coronavirus pandemic. Depression, Anxiety, and Stress Scales (DASS-21) and Connor-Davidson Resilience Scale 25-item were administered. Logistic regression was used to identify factors associated with psychological ill-effects and resilience. DASS-21 depression, anxiety and stress scores were high; these were associated with difficulties with infection control measures, autism diagnosis, and need for early intervention services. For caregivers of children with ASD, our DASS-21 scores were significantly higher than non-pandemic scores locally and in other Asian sites. Resilience scores correlated inversely with DASS-21 scores. Targeted support to selected at-risk caregivers and improving resilience can help their coping. En ligne : http://dx.doi.org/10.1007/s10803-021-05180-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477

Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware / S. SRINIVASAN in Autism Research, 14-8 (August 2021)  

Public ISBD [article]  inAutism Research > 14-8 (August 2021) . - p.1736-1758 Titre : Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware Type de document : Texte imprimé et/ou numérique Auteurs : S. SRINIVASAN, Auteur ; A. EKBLADH, Auteur ; B. FREEDMAN, Auteur ; Anjana N. BHAT, Auteur Article en page(s) : p.1736-1758 Langues : Anglais (eng) Mots-clés : Activities of Daily Living  Adolescent  Autism Spectrum Disorder/therapy  Caregivers  Child  Counseling  Delaware  Health Services Accessibility  Health Services Needs and Demand  Humans  Needs Assessment  Autism Spectrum Disorder  caregivers  children and youth  family support  healthcare  needs assessment  unmet needs  declare. Index. décimale : PER Périodiques Résumé : The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24?years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 and 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20-24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted child/youth unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant's functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families. LAY SUMMARY: A statewide needs assessment survey of caregivers of children and youth with ASD revealed that 50% responders had unmet needs relative to both child/youth healthcare services and family support services. Number of prior services received, limitations in accessing healthcare, and unmet needs for family support are linked to child/youth unmet healthcare needs. Severity of autism and difficulties accessing child/youth healthcare are associated with participant's functional dependence. Together, these findings call for placing the family at the heart of the service system in ASD. En ligne : http://dx.doi.org/10.1002/aur.2514 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449 [article] Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware [Texte imprimé et/ou numérique] / S. SRINIVASAN, Auteur ; A. EKBLADH, Auteur ; B. FREEDMAN, Auteur ; Anjana N. BHAT, Auteur . - p.1736-1758. Langues : Anglais (eng) in Autism Research > 14-8 (August 2021) . - p.1736-1758 Mots-clés : Activities of Daily Living  Adolescent  Autism Spectrum Disorder/therapy  Caregivers  Child  Counseling  Delaware  Health Services Accessibility  Health Services Needs and Demand  Humans  Needs Assessment  Autism Spectrum Disorder  caregivers  children and youth  family support  healthcare  needs assessment  unmet needs  declare. Index. décimale : PER Périodiques Résumé : The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24?years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 and 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20-24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted child/youth unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant's functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families. LAY SUMMARY: A statewide needs assessment survey of caregivers of children and youth with ASD revealed that 50% responders had unmet needs relative to both child/youth healthcare services and family support services. Number of prior services received, limitations in accessing healthcare, and unmet needs for family support are linked to child/youth unmet healthcare needs. Severity of autism and difficulties accessing child/youth healthcare are associated with participant's functional dependence. Together, these findings call for placing the family at the heart of the service system in ASD. En ligne : http://dx.doi.org/10.1002/aur.2514 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449

A qualitative study of autism services and supports in Singapore: Perspectives of service providers, autistic adults and caregivers / E. HAN in Autism, 25-8 (November 2021)  

Public ISBD [article]  inAutism > 25-8 (November 2021) . - p.2279-2290 Titre : A qualitative study of autism services and supports in Singapore: Perspectives of service providers, autistic adults and caregivers Type de document : Texte imprimé et/ou numérique Auteurs : E. HAN, Auteur ; M. M. J. TAN, Auteur ; L. CRANE, Auteur ; H. LEGIDO-QUIGLEY, Auteur Article en page(s) : p.2279-2290 Langues : Anglais (eng) Mots-clés : Adult  Autism Spectrum Disorder/therapy  Autistic Disorder  Caregivers  Humans  Qualitative Research  Singapore  autism services and supports  autistic adults  caregivers  qualitative research  service providers Index. décimale : PER Périodiques Résumé : Because autism is a lifelong and complex condition, autistic people may need a range of supports cutting across different sectors (e.g. health, education and social care) at different stages of their lives. Studies in some countries have shown that autistic people and their families face difficulties accessing the services they need, but no research has been done on this topic in Singapore. To start addressing this gap, we interviewed 21 service providers, autistic adults and caregivers/parents of autistic children to find out their perceptions and experiences of autism services and supports in Singapore. Our participants told us that beyond improving access to autism-specific services, they also hoped to see more flexible supports in an inclusive environment and a broader change in societal attitudes. This study highlights that autism service provision should be informed by autistic voices and not only focus on impairment but also recognise the strengths of autistic people alongside their very real needs. The whole of society - including policymakers, professionals, employers, educators, families and autistic people themselves - needs to work together to fight autism stigma and discrimination. En ligne : http://dx.doi.org/10.1177/13623613211016112 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 [article] A qualitative study of autism services and supports in Singapore: Perspectives of service providers, autistic adults and caregivers [Texte imprimé et/ou numérique] / E. HAN, Auteur ; M. M. J. TAN, Auteur ; L. CRANE, Auteur ; H. LEGIDO-QUIGLEY, Auteur . - p.2279-2290. Langues : Anglais (eng) in Autism > 25-8 (November 2021) . - p.2279-2290 Mots-clés : Adult  Autism Spectrum Disorder/therapy  Autistic Disorder  Caregivers  Humans  Qualitative Research  Singapore  autism services and supports  autistic adults  caregivers  qualitative research  service providers Index. décimale : PER Périodiques Résumé : Because autism is a lifelong and complex condition, autistic people may need a range of supports cutting across different sectors (e.g. health, education and social care) at different stages of their lives. Studies in some countries have shown that autistic people and their families face difficulties accessing the services they need, but no research has been done on this topic in Singapore. To start addressing this gap, we interviewed 21 service providers, autistic adults and caregivers/parents of autistic children to find out their perceptions and experiences of autism services and supports in Singapore. Our participants told us that beyond improving access to autism-specific services, they also hoped to see more flexible supports in an inclusive environment and a broader change in societal attitudes. This study highlights that autism service provision should be informed by autistic voices and not only focus on impairment but also recognise the strengths of autistic people alongside their very real needs. The whole of society - including policymakers, professionals, employers, educators, families and autistic people themselves - needs to work together to fight autism stigma and discrimination. En ligne : http://dx.doi.org/10.1177/13623613211016112 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451

Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders / Amy M. DANIELS in Journal of Autism and Developmental Disorders, 47-8 (August 2017)  

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Brief Report: Assessment Experiences of Children with Neurogenetic Syndromes: Caregivers' Perceptions and Suggestions for Improvement / Bridgette KELLEHER in Journal of Autism and Developmental Disorders, 50-4 (April 2020)  

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Brief Report: Identifying Concerns of Military Caregivers with Children Diagnosed with ASD Following a Military Directed Relocation / B. E. FARLEY in Journal of Autism and Developmental Disorders, 52-1 (January 2022)  

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Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort / L. C. WHITE in Journal of Autism and Developmental Disorders, 51-10 (October 2021)  

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Brief report: Parenting stress among Chinese and Dutch caregivers of children with autism / Fangyuan LIU in Research in Autism Spectrum Disorders, 107 (September 2023)  

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