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Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions / Rini VOHRA in Autism, 18-7 (October 2014)
[article]
Titre : Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions Type de document : Texte imprimé et/ou numérique Auteurs : Rini VOHRA, Auteur ; Suresh MADHAVAN, Auteur ; Usha SAMBAMOORTHI, Auteur ; Claire ST PETER, Auteur Article en page(s) : p.815-826 Langues : Anglais (eng) Mots-clés : Access to services autism autism spectrum disorder health care burden of autism developmental disabilities family impact mental health condition quality of care Index. décimale : PER Périodiques Résumé : This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child’s special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. En ligne : http://dx.doi.org/10.1177/1362361313512902 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241
in Autism > 18-7 (October 2014) . - p.815-826[article] Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions [Texte imprimé et/ou numérique] / Rini VOHRA, Auteur ; Suresh MADHAVAN, Auteur ; Usha SAMBAMOORTHI, Auteur ; Claire ST PETER, Auteur . - p.815-826.
Langues : Anglais (eng)
in Autism > 18-7 (October 2014) . - p.815-826
Mots-clés : Access to services autism autism spectrum disorder health care burden of autism developmental disabilities family impact mental health condition quality of care Index. décimale : PER Périodiques Résumé : This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child’s special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. En ligne : http://dx.doi.org/10.1177/1362361313512902 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 Language Barriers Impact Access to Services for Children with Autism Spectrum Disorders / H. G. ST AMANT in Journal of Autism and Developmental Disorders, 48-2 (February 2018)
[article]
Titre : Language Barriers Impact Access to Services for Children with Autism Spectrum Disorders Type de document : Texte imprimé et/ou numérique Auteurs : H. G. ST AMANT, Auteur ; Sheree M. SCHRAGER, Auteur ; C. PENA-RICARDO, Auteur ; M. E. WILLIAMS, Auteur ; D. L. VANDERBILT, Auteur Article en page(s) : p.333-340 Langues : Anglais (eng) Mots-clés : Access to services Autism spectrum disorder Health care disparities Individualized education plan Language barriers Index. décimale : PER Périodiques Résumé : Racial and ethnic disparities in accessing health care have been described in children with autism spectrum disorder (ASD). In a retrospective chart review of 152 children with ASD, children of parents whose primary language was English were significantly more likely to have both social skills and communication goals within their individualized education plan (IEP) compared to children of parents whose primary language was not English. Additionally, children of primary English speakers received significantly more hours of direct services from their state disability program. After controlling for demographic covariates, findings suggest that language barriers may negatively affect parents' abilities to access health care services for their child with ASD. Acculturation factors must therefore be considered when analyzing disparities in autism. En ligne : https://doi.org/10.1007/s10803-017-3330-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=337
in Journal of Autism and Developmental Disorders > 48-2 (February 2018) . - p.333-340[article] Language Barriers Impact Access to Services for Children with Autism Spectrum Disorders [Texte imprimé et/ou numérique] / H. G. ST AMANT, Auteur ; Sheree M. SCHRAGER, Auteur ; C. PENA-RICARDO, Auteur ; M. E. WILLIAMS, Auteur ; D. L. VANDERBILT, Auteur . - p.333-340.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 48-2 (February 2018) . - p.333-340
Mots-clés : Access to services Autism spectrum disorder Health care disparities Individualized education plan Language barriers Index. décimale : PER Périodiques Résumé : Racial and ethnic disparities in accessing health care have been described in children with autism spectrum disorder (ASD). In a retrospective chart review of 152 children with ASD, children of parents whose primary language was English were significantly more likely to have both social skills and communication goals within their individualized education plan (IEP) compared to children of parents whose primary language was not English. Additionally, children of primary English speakers received significantly more hours of direct services from their state disability program. After controlling for demographic covariates, findings suggest that language barriers may negatively affect parents' abilities to access health care services for their child with ASD. Acculturation factors must therefore be considered when analyzing disparities in autism. En ligne : https://doi.org/10.1007/s10803-017-3330-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=337 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability / Jessica Hughes in Autism, 28-5 (May 2024)
[article]
Titre : 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability Type de document : Texte imprimé et/ou numérique Auteurs : Jessica Hughes, Auteur ; Ruth ROBERTS, Auteur ; Joanne TARVER, Auteur ; Cheryl WARTERS-LOUTH, Auteur ; Betty ZHANG, Auteur ; Emma SOUTHWARD, Auteur ; Rachel SHAW, Auteur ; Georgina EDWARDS, Auteur ; Jane WAITE, Auteur ; Effie PEARSON, Auteur Année de publication : 2024 Article en page(s) : p.1231-1244 Langues : Anglais (eng) Mots-clés : access to services anxiety autism challenging behaviour intellectual disability intervention Index. décimale : PER Périodiques Résumé : Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers' experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population. Lay Abstract Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families. En ligne : https://dx.doi.org/10.1177/13623613231196084 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527
in Autism > 28-5 (May 2024) . - p.1231-1244[article] 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability [Texte imprimé et/ou numérique] / Jessica Hughes, Auteur ; Ruth ROBERTS, Auteur ; Joanne TARVER, Auteur ; Cheryl WARTERS-LOUTH, Auteur ; Betty ZHANG, Auteur ; Emma SOUTHWARD, Auteur ; Rachel SHAW, Auteur ; Georgina EDWARDS, Auteur ; Jane WAITE, Auteur ; Effie PEARSON, Auteur . - 2024 . - p.1231-1244.
Langues : Anglais (eng)
in Autism > 28-5 (May 2024) . - p.1231-1244
Mots-clés : access to services anxiety autism challenging behaviour intellectual disability intervention Index. décimale : PER Périodiques Résumé : Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers' experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population. Lay Abstract Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families. En ligne : https://dx.doi.org/10.1177/13623613231196084 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 Perceived self-efficacy in parents of adolescents and adults with autism spectrum disorder / Jonathan A WEISS in Autism, 20-4 (May 2016)
[article]
Titre : Perceived self-efficacy in parents of adolescents and adults with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Jonathan A WEISS, Auteur ; Ami TINT, Auteur ; Melissa PAQUETTE-SMITH, Auteur ; Yona LUNSKY, Auteur Article en page(s) : p.425-434 Langues : Anglais (eng) Mots-clés : access to services autism spectrum disorder parent self-efficacy parenting Index. décimale : PER Périodiques Résumé : Many parents of adolescents and adults with autism spectrum disorder experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic, and clinical need variables as they relate to parents’ experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12–25?years of age. Results suggest that parent self-efficacy is related to a number of variables and not simply a child’s clinical situation, including child age, parent immigrant status, barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with autism spectrum disorder across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children. En ligne : http://dx.doi.org/10.1177/1362361315586292 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=287
in Autism > 20-4 (May 2016) . - p.425-434[article] Perceived self-efficacy in parents of adolescents and adults with autism spectrum disorder [Texte imprimé et/ou numérique] / Jonathan A WEISS, Auteur ; Ami TINT, Auteur ; Melissa PAQUETTE-SMITH, Auteur ; Yona LUNSKY, Auteur . - p.425-434.
Langues : Anglais (eng)
in Autism > 20-4 (May 2016) . - p.425-434
Mots-clés : access to services autism spectrum disorder parent self-efficacy parenting Index. décimale : PER Périodiques Résumé : Many parents of adolescents and adults with autism spectrum disorder experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic, and clinical need variables as they relate to parents’ experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12–25?years of age. Results suggest that parent self-efficacy is related to a number of variables and not simply a child’s clinical situation, including child age, parent immigrant status, barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with autism spectrum disorder across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children. En ligne : http://dx.doi.org/10.1177/1362361315586292 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=287 Impact of Choice on Social Outcomes of Adults with ASD / Margaret H. MEHLING in Journal of Autism and Developmental Disorders, 45-6 (June 2015)
[article]
Titre : Impact of Choice on Social Outcomes of Adults with ASD Type de document : Texte imprimé et/ou numérique Auteurs : Margaret H. MEHLING, Auteur ; Marc J. TASSE, Auteur Article en page(s) : p.1588-1602 Langues : Anglais (eng) Mots-clés : Autism Social relationships Social participation Access to services Personal control National core indicators Index. décimale : PER Périodiques Résumé : This study explores social outcomes for adults with autism spectrum disorder (ASD) in comparison to adults with developmental disabilities other than ASD by investigating the relationships between the constructs Social Participation and Relationships, Social Determination, and Personal Control. Structural equation modeling (SEM) was used to test a model of the relationships among constructs of interest and structured means analysis was used to test for mean group differences on these constructs. Results indicated that individuals with ASD had lower levels of Social Determination and Friendships than individuals with other developmental disabilities. SEM analyses yielded significant relationships between constructs. Results provide insight with regards to novel statistical, theoretical, and practical approaches to the study of social outcomes for individuals with ASD. En ligne : http://dx.doi.org/10.1007/s10803-014-2312-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=259
in Journal of Autism and Developmental Disorders > 45-6 (June 2015) . - p.1588-1602[article] Impact of Choice on Social Outcomes of Adults with ASD [Texte imprimé et/ou numérique] / Margaret H. MEHLING, Auteur ; Marc J. TASSE, Auteur . - p.1588-1602.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 45-6 (June 2015) . - p.1588-1602
Mots-clés : Autism Social relationships Social participation Access to services Personal control National core indicators Index. décimale : PER Périodiques Résumé : This study explores social outcomes for adults with autism spectrum disorder (ASD) in comparison to adults with developmental disabilities other than ASD by investigating the relationships between the constructs Social Participation and Relationships, Social Determination, and Personal Control. Structural equation modeling (SEM) was used to test a model of the relationships among constructs of interest and structured means analysis was used to test for mean group differences on these constructs. Results indicated that individuals with ASD had lower levels of Social Determination and Friendships than individuals with other developmental disabilities. SEM analyses yielded significant relationships between constructs. Results provide insight with regards to novel statistical, theoretical, and practical approaches to the study of social outcomes for individuals with ASD. En ligne : http://dx.doi.org/10.1007/s10803-014-2312-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=259