Barriers to service and unmet need among autistic adolescents and young adults / Karen J ISHLER in Autism, 27-7 (October 2023)  

Public ISBD [article]  inAutism > 27-7 (October 2023) . - p.1997-2010 Titre : Barriers to service and unmet need among autistic adolescents and young adults Type de document : texte imprimé Auteurs : Karen J ISHLER, Auteur ; Kristen A. BERG, Auteur ; Tugba OLGAC, Auteur ; Rita OBEID, Auteur ; David E. BIEGEL, Auteur Article en page(s) : p.1997-2010 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  family caregivers  unmet service needs  obstacles Index. décimale : PER Périodiques Résumé : Many of the nearly six million autistic adolescents and adults in the United States require support to navigate daily life. Family members often provide the first line of support for autistic youth by providing care and coordinating services. Although considerable research has examined the perspectives of family members caring for young autistic children, comparatively less has focused on those caring for transition-age youth who often struggle to access needed services as they leave child-serving systems of care. This study examined caregiver-reported barriers to service for 174 adolescents and young adults on the spectrum (ages 16-30) and the association between such barriers and unmet service needs. Exploratory factor analysis suggested two service barrier domains: access (e.g., cost) and quality (e.g., providers not trained). Regression models indicated that caregivers whose youth were diagnosed at older ages perceived both greater access and quality barriers. Male caregivers reported fewer access barriers, and those who perceived greater caregiver burdens (daily life disruptions, financial difficulties, and worries) reported more access barriers. Caregivers whose youth lived with them reported fewer quality barriers. Greater access-but not quality-service barriers predicted greater unmet service needs. Findings have implications for service delivery to autistic youth and specific directions for future research.Lay AbstractPrior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families. En ligne : http://dx.doi.org/10.1177/13623613221150569 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510 [article] Barriers to service and unmet need among autistic adolescents and young adults [texte imprimé] / Karen J ISHLER, Auteur ; Kristen A. BERG, Auteur ; Tugba OLGAC, Auteur ; Rita OBEID, Auteur ; David E. BIEGEL, Auteur . - p.1997-2010. Langues : Anglais (eng) in Autism > 27-7 (October 2023) . - p.1997-2010 Mots-clés : autism spectrum disorders  family caregivers  unmet service needs  obstacles Index. décimale : PER Périodiques Résumé : Many of the nearly six million autistic adolescents and adults in the United States require support to navigate daily life. Family members often provide the first line of support for autistic youth by providing care and coordinating services. Although considerable research has examined the perspectives of family members caring for young autistic children, comparatively less has focused on those caring for transition-age youth who often struggle to access needed services as they leave child-serving systems of care. This study examined caregiver-reported barriers to service for 174 adolescents and young adults on the spectrum (ages 16-30) and the association between such barriers and unmet service needs. Exploratory factor analysis suggested two service barrier domains: access (e.g., cost) and quality (e.g., providers not trained). Regression models indicated that caregivers whose youth were diagnosed at older ages perceived both greater access and quality barriers. Male caregivers reported fewer access barriers, and those who perceived greater caregiver burdens (daily life disruptions, financial difficulties, and worries) reported more access barriers. Caregivers whose youth lived with them reported fewer quality barriers. Greater access-but not quality-service barriers predicted greater unmet service needs. Findings have implications for service delivery to autistic youth and specific directions for future research.Lay AbstractPrior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families. En ligne : http://dx.doi.org/10.1177/13623613221150569 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510

"Don?t Promise Something You can?t Deliver:" Caregivers' Advice for Improving Services to Adolescents and Young Adults with Autism / Kristen A. BERG in Autism Research and Treatment, 2023 (2023)  

Public ISBD [article]  inAutism Research and Treatment > 2023 (2023) Titre : "Don?t Promise Something You can?t Deliver:" Caregivers' Advice for Improving Services to Adolescents and Young Adults with Autism Type de document : texte imprimé Auteurs : Kristen A. BERG, Auteur ; Karen J. ISHLER, Auteur ; Sarah LYTLE, Auteur ; Ronna KAPLAN, Auteur ; Fei WANG, Auteur ; Tugba OLGAC, Auteur ; Stacy MINER, Auteur ; Marjorie N. EDGUER, Auteur ; David E. BIEGEL, Auteur Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day-to-day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship-building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood. En ligne : https://doi.org/10.1155/2023/6597554 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=538 [article] "Don?t Promise Something You can?t Deliver:" Caregivers' Advice for Improving Services to Adolescents and Young Adults with Autism [texte imprimé] / Kristen A. BERG, Auteur ; Karen J. ISHLER, Auteur ; Sarah LYTLE, Auteur ; Ronna KAPLAN, Auteur ; Fei WANG, Auteur ; Tugba OLGAC, Auteur ; Stacy MINER, Auteur ; Marjorie N. EDGUER, Auteur ; David E. BIEGEL, Auteur. Langues : Anglais (eng) in Autism Research and Treatment > 2023 (2023) Index. décimale : PER Périodiques Résumé : Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day-to-day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship-building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood. En ligne : https://doi.org/10.1155/2023/6597554 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=538

Service Use Among Transition-Age Youth with Autism Spectrum Disorder / K. J. ISHLER in Journal of Autism and Developmental Disorders, 52-3 (March 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-3 (March 2022) . - p.1051-1065 Titre : Service Use Among Transition-Age Youth with Autism Spectrum Disorder Type de document : texte imprimé Auteurs : K. J. ISHLER, Auteur ; David E. BIEGEL, Auteur ; F. WANG, Auteur ; T. OLGAC, Auteur ; S. LYTLE, Auteur ; S. MINER, Auteur ; M. EDGUER, Auteur ; R. KAPLAN, Auteur Article en page(s) : p.1051-1065 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autism Spectrum Disorder/epidemiology/psychology/therapy  Caregivers  Delivery of Health Care  Humans  Medicaid  Patient Acceptance of Health Care  United States  Young Adult  Autism spectrum disorder  Family  Predictors  Service use  Transition age Index. décimale : PER Périodiques Résumé : This study explored predictors of service use among 174 transition-age youth (age 16-30) with an Autism Spectrum Disorder using Andersen's (J Health Soc Behav 36(1):1-10, 1995) healthcare utilization model. Family caregivers were interviewed about past 6-month use of 15 services. On average, youth used 6.1 and needed 3.2 additional services. Greater service use was associated with two predisposing (caregiver college educated, caregiver not married/partnered), two enabling (youth has Medicaid waiver, youth in high school), and one need factor (lower adaptive functioning). Use of specific services was most strongly related to enabling (Medicaid waiver, in high school) and need factors (lower adaptive functioning, comorbid mental health diagnosis). Findings provide a snapshot of the "service cliff" faced by families and highlight the need for additional research. En ligne : http://dx.doi.org/10.1007/s10803-021-04999-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=455 [article] Service Use Among Transition-Age Youth with Autism Spectrum Disorder [texte imprimé] / K. J. ISHLER, Auteur ; David E. BIEGEL, Auteur ; F. WANG, Auteur ; T. OLGAC, Auteur ; S. LYTLE, Auteur ; S. MINER, Auteur ; M. EDGUER, Auteur ; R. KAPLAN, Auteur . - p.1051-1065. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-3 (March 2022) . - p.1051-1065 Mots-clés : Adolescent  Adult  Autism Spectrum Disorder/epidemiology/psychology/therapy  Caregivers  Delivery of Health Care  Humans  Medicaid  Patient Acceptance of Health Care  United States  Young Adult  Autism spectrum disorder  Family  Predictors  Service use  Transition age Index. décimale : PER Périodiques Résumé : This study explored predictors of service use among 174 transition-age youth (age 16-30) with an Autism Spectrum Disorder using Andersen's (J Health Soc Behav 36(1):1-10, 1995) healthcare utilization model. Family caregivers were interviewed about past 6-month use of 15 services. On average, youth used 6.1 and needed 3.2 additional services. Greater service use was associated with two predisposing (caregiver college educated, caregiver not married/partnered), two enabling (youth has Medicaid waiver, youth in high school), and one need factor (lower adaptive functioning). Use of specific services was most strongly related to enabling (Medicaid waiver, in high school) and need factors (lower adaptive functioning, comorbid mental health diagnosis). Findings provide a snapshot of the "service cliff" faced by families and highlight the need for additional research. En ligne : http://dx.doi.org/10.1007/s10803-021-04999-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=455

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