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95 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)
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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
in Autism Research > 14-12 (December 2021) . - p.2477-2494[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)
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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
in Research in Autism Spectrum Disorders > 80 (February 2021) . - p.101696[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 The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism / Kathy LEADBITTER ; Louisa HARRISON ; Sophie LANGHORNE ; Ceri ELLIS ; Richard Smallman ; Amelia PEARSON ; Latha HACKETT ; Leo KROLL ; Alison Dunkerley ; Hilary Beach ; June Gilbert ; Amy van Gils ; Tessa Hutton ; Jonathan GREEN ; Penny BEE in Autism, 29-2 (February 2025)
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Titre : The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism : Autism Type de document : Texte imprimé et/ou numérique Auteurs : Kathy LEADBITTER, Auteur ; Louisa HARRISON, Auteur ; Sophie LANGHORNE, Auteur ; Ceri ELLIS, Auteur ; Richard Smallman, Auteur ; Amelia PEARSON, Auteur ; Latha HACKETT, Auteur ; Leo KROLL, Auteur ; Alison Dunkerley, Auteur ; Hilary Beach, Auteur ; June Gilbert, Auteur ; Amy van Gils, Auteur ; Tessa Hutton, Auteur ; Jonathan GREEN, Auteur ; Penny BEE, Auteur Article en page(s) : p.367-381 Langues : Anglais (eng) Mots-clés : autism diagnosis caregivers support acceptance commitment therapy Index. décimale : PER Périodiques Résumé : Caregivers can experience significant challenges following their child?s autism diagnosis and often seek informational, relational and emotional support. Post-diagnostic support for caregivers has received relatively little research attention and represents a significant gap in the international evidence base. We used an iterative codesign process to develop a manualised group-based post-diagnostic programme, Empower-Autism, with associated theory of change, to address the diverse needs of caregivers and improve caregiver mental health. Empower-Autism blended evidence-informed autism psychoeducation with psychotherapeutic components grounded in Acceptance and Commitment Therapy. Three feasibility groups (two in-person and one online) were delivered with 29 clinically referred, socioeconomically diverse caregivers. We evaluated feasibility and acceptability through quantitative attendance and satisfaction data, and thematic analysis of detailed interviews with 17 participants and 5 facilitators. Attendance was satisfactory (76% participants meeting prespecified criteria) and programme satisfaction was good. Qualitative analysis suggested the programme was acceptable and accessible, and highlighted the areas for improvement. Caregivers described perceived benefits from the programme, including improved wellbeing, social connection, autism positivity and more attuned parenting. Empower-Autism is being evaluated within a large randomised controlled trial and, if shown to be clinically and cost-effective, this programme will fill an identified evidence gap in the United Kingdom and global provision. Lay Abstract What is already known about the topic? Parents and carers face many challenges following their child?s autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing. What does this article add? This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child?s autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way. Implications for practice, research or policy The new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice. En ligne : https://dx.doi.org/10.1177/13623613241274566 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547
in Autism > 29-2 (February 2025) . - p.367-381[article] The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism : Autism [Texte imprimé et/ou numérique] / Kathy LEADBITTER, Auteur ; Louisa HARRISON, Auteur ; Sophie LANGHORNE, Auteur ; Ceri ELLIS, Auteur ; Richard Smallman, Auteur ; Amelia PEARSON, Auteur ; Latha HACKETT, Auteur ; Leo KROLL, Auteur ; Alison Dunkerley, Auteur ; Hilary Beach, Auteur ; June Gilbert, Auteur ; Amy van Gils, Auteur ; Tessa Hutton, Auteur ; Jonathan GREEN, Auteur ; Penny BEE, Auteur . - p.367-381.
Langues : Anglais (eng)
in Autism > 29-2 (February 2025) . - p.367-381
Mots-clés : autism diagnosis caregivers support acceptance commitment therapy Index. décimale : PER Périodiques Résumé : Caregivers can experience significant challenges following their child?s autism diagnosis and often seek informational, relational and emotional support. Post-diagnostic support for caregivers has received relatively little research attention and represents a significant gap in the international evidence base. We used an iterative codesign process to develop a manualised group-based post-diagnostic programme, Empower-Autism, with associated theory of change, to address the diverse needs of caregivers and improve caregiver mental health. Empower-Autism blended evidence-informed autism psychoeducation with psychotherapeutic components grounded in Acceptance and Commitment Therapy. Three feasibility groups (two in-person and one online) were delivered with 29 clinically referred, socioeconomically diverse caregivers. We evaluated feasibility and acceptability through quantitative attendance and satisfaction data, and thematic analysis of detailed interviews with 17 participants and 5 facilitators. Attendance was satisfactory (76% participants meeting prespecified criteria) and programme satisfaction was good. Qualitative analysis suggested the programme was acceptable and accessible, and highlighted the areas for improvement. Caregivers described perceived benefits from the programme, including improved wellbeing, social connection, autism positivity and more attuned parenting. Empower-Autism is being evaluated within a large randomised controlled trial and, if shown to be clinically and cost-effective, this programme will fill an identified evidence gap in the United Kingdom and global provision. Lay Abstract What is already known about the topic? Parents and carers face many challenges following their child?s autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing. What does this article add? This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child?s autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way. Implications for practice, research or policy The new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice. En ligne : https://dx.doi.org/10.1177/13623613241274566 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547 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)
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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
in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3015-3025[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)
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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
in Autism Research > 14-8 (August 2021) . - p.1736-1758[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)
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PermalinkAutism 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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PermalinkBrief 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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PermalinkBrief 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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PermalinkBrief 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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