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

Examination of protective factors that promote prosocial skill development among children exposed to intimate partner violence / Megan R. HOLMES ; Anna E. Bender ; Susan YOON ; Kristen A. BERG ; Janelle Duda-Banwar ; Yafan Chen ; Kylie E. Evans ; Amy Korsch-Williams ; Adam T. Perzynski in Development and Psychopathology, 37-1 (February 2025)  

Public ISBD [article]  inDevelopment and Psychopathology > 37-1 (February 2025) . - p.490-503 Titre : Examination of protective factors that promote prosocial skill development among children exposed to intimate partner violence : Development and Psychopathology Type de document : texte imprimé Auteurs : Megan R. HOLMES, Auteur ; Anna E. Bender, Auteur ; Susan YOON, Auteur ; Kristen A. BERG, Auteur ; Janelle Duda-Banwar, Auteur ; Yafan Chen, Auteur ; Kylie E. Evans, Auteur ; Amy Korsch-Williams, Auteur ; Adam T. Perzynski, Auteur Article en page(s) : p.490-503 Langues : Anglais (eng) Mots-clés : Child maltreatment  intimate partner violence  longitudinal  prosocial skill development Index. décimale : PER Périodiques Résumé : This retrospective cohort study examined prosocial skills development in child welfare-involved children, how intimate partner violence (IPV) exposure explained heterogeneity in children s trajectories of prosocial skill development, and the degree to which protective factors across children s ecologies promoted prosocial skill development. Data were from 1,678 children from the National Survey of Child and Adolescent Well-being I, collected between 1999 and 2007. Cohort-sequential growth mixture models were estimated to identify patterns of prosocial skill development between the ages of 3 to 10 years. Four diverse pathways were identified, including two groups that started high (high subtle-decreasing; high decreasing-to-increasing) and two groups that started low (low stable; low increasing-to-decreasing). Children with prior history of child welfare involvement, preschool-age IPV exposure, school-age IPV exposure, or family income below the federal poverty level had higher odds of being in the high decreasing-to-increasing group compared with the high subtle-decreasing group. Children with a mother with greater than high school education or higher maternal responsiveness had higher odds of being in the low increasing-to-decreasing group compared with the low stable group. The importance of maternal responsiveness in fostering prosocial skill development underlines the need for further assessment and intervention. Recommendations for clinical assessment and parenting programs are provided. En ligne : https://dx.doi.org/10.1017/S0954579424000087 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=546 [article] Examination of protective factors that promote prosocial skill development among children exposed to intimate partner violence : Development and Psychopathology [texte imprimé] / Megan R. HOLMES, Auteur ; Anna E. Bender, Auteur ; Susan YOON, Auteur ; Kristen A. BERG, Auteur ; Janelle Duda-Banwar, Auteur ; Yafan Chen, Auteur ; Kylie E. Evans, Auteur ; Amy Korsch-Williams, Auteur ; Adam T. Perzynski, Auteur . - p.490-503. Langues : Anglais (eng) in Development and Psychopathology > 37-1 (February 2025) . - p.490-503 Mots-clés : Child maltreatment  intimate partner violence  longitudinal  prosocial skill development Index. décimale : PER Périodiques Résumé : This retrospective cohort study examined prosocial skills development in child welfare-involved children, how intimate partner violence (IPV) exposure explained heterogeneity in children s trajectories of prosocial skill development, and the degree to which protective factors across children s ecologies promoted prosocial skill development. Data were from 1,678 children from the National Survey of Child and Adolescent Well-being I, collected between 1999 and 2007. Cohort-sequential growth mixture models were estimated to identify patterns of prosocial skill development between the ages of 3 to 10 years. Four diverse pathways were identified, including two groups that started high (high subtle-decreasing; high decreasing-to-increasing) and two groups that started low (low stable; low increasing-to-decreasing). Children with prior history of child welfare involvement, preschool-age IPV exposure, school-age IPV exposure, or family income below the federal poverty level had higher odds of being in the high decreasing-to-increasing group compared with the high subtle-decreasing group. Children with a mother with greater than high school education or higher maternal responsiveness had higher odds of being in the low increasing-to-decreasing group compared with the low stable group. The importance of maternal responsiveness in fostering prosocial skill development underlines the need for further assessment and intervention. Recommendations for clinical assessment and parenting programs are provided. En ligne : https://dx.doi.org/10.1017/S0954579424000087 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=546

"Glimmers of hope and good things": Positive aspects of caregiving to autistic adolescents and young adults / Carina N MONTOYA in Autism, 29-1 (January 2025)  

Public ISBD [article]  inAutism > 29-1 (January 2025) . - p.233-246 Titre : "Glimmers of hope and good things": Positive aspects of caregiving to autistic adolescents and young adults Type de document : texte imprimé Auteurs : Carina N MONTOYA, Auteur ; Karen J ISHLER, Auteur ; Rita OBEID, Auteur ; Julie PAYNER, Auteur ; Kristen A. BERG, Auteur Article en page(s) : p.233-246 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  caregiving rewards  coping  family functioning and support  mixed methods  older adolescents  parenting  qualitative research  young adults Index. décimale : PER Périodiques Résumé : Studies commonly measure the challenges of caring for autistic adolescents and young adults, but scarcely explore the positive aspects of the caregiving experience. This study employed an equal-status concurrent mixed methods approach to quantitatively assess predictors of positive aspects of caregiving and qualitatively examine 174 caregivers' perceived rewards, or positive aspects, of caring for autistic adolescents and young adults (ages 16-30 years). Results from multiple regression analyses suggest that youth?s helping behavior most strongly predicted positive aspects of caregiving, and youth receiving more services and caregivers' greater report of social support and use of religious, acceptance, and instrumental support coping also significantly predicted greater reported positive aspects of caregiving. Findings from a phenomenologically informed thematic analysis suggest that caregivers find reward in witnessing youths' progress and joyous qualities, in the caregiver-youth relationship, and in caregivers' own growth. Mixed methods findings highlight that positive aspects of caregiving likely extend caregivers' self-development and may be relationship-specific. Study findings offer a strengths-based framework that highlights the positive aspects of caring for autistic adolescents and young adults. We contribute to the research in defining factors related to positive aspects of caregiving, which may inform future work and contribute to caregiver well-being.Lay abstractWe wanted to explore the positive, or rewarding, experiences of caregivers who were caring for older adolescents or young autistic adults. We surveyed 174 caregivers, asking questions about how they dealt with stressors, the support they had from people in their lives, and the different behaviors of the autistic youth they care for. Using an existing measure, as well as an open-ended question, we asked caregivers about the most rewarding aspects of caring for their youth. When examining survey responses, we found that caregivers who reported receiving more help and support from their autistic youth also reported more positive aspects related to caregiving. In response to our study?s open-ended question, caregivers talked about the reward of seeing their youth grow and progress (e.g. learning new skills, reaching new milestones), described positive aspects of the relationship with their youth (e.g. sharing a special bond), and reflected on their own learning and personal growth as caregivers and people. Our findings highlight the positive, or rewarding, aspects of caregiving for autistic adolescents and young adults. This work will inform future work studying positive aspects of caring for autistic individuals and how this may impact caregivers' psychological well-being. En ligne : https://dx.doi.org/10.1177/13623613241272050 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544 [article] "Glimmers of hope and good things": Positive aspects of caregiving to autistic adolescents and young adults [texte imprimé] / Carina N MONTOYA, Auteur ; Karen J ISHLER, Auteur ; Rita OBEID, Auteur ; Julie PAYNER, Auteur ; Kristen A. BERG, Auteur . - p.233-246. Langues : Anglais (eng) in Autism > 29-1 (January 2025) . - p.233-246 Mots-clés : autism spectrum disorders  caregiving rewards  coping  family functioning and support  mixed methods  older adolescents  parenting  qualitative research  young adults Index. décimale : PER Périodiques Résumé : Studies commonly measure the challenges of caring for autistic adolescents and young adults, but scarcely explore the positive aspects of the caregiving experience. This study employed an equal-status concurrent mixed methods approach to quantitatively assess predictors of positive aspects of caregiving and qualitatively examine 174 caregivers' perceived rewards, or positive aspects, of caring for autistic adolescents and young adults (ages 16-30 years). Results from multiple regression analyses suggest that youth?s helping behavior most strongly predicted positive aspects of caregiving, and youth receiving more services and caregivers' greater report of social support and use of religious, acceptance, and instrumental support coping also significantly predicted greater reported positive aspects of caregiving. Findings from a phenomenologically informed thematic analysis suggest that caregivers find reward in witnessing youths' progress and joyous qualities, in the caregiver-youth relationship, and in caregivers' own growth. Mixed methods findings highlight that positive aspects of caregiving likely extend caregivers' self-development and may be relationship-specific. Study findings offer a strengths-based framework that highlights the positive aspects of caring for autistic adolescents and young adults. We contribute to the research in defining factors related to positive aspects of caregiving, which may inform future work and contribute to caregiver well-being.Lay abstractWe wanted to explore the positive, or rewarding, experiences of caregivers who were caring for older adolescents or young autistic adults. We surveyed 174 caregivers, asking questions about how they dealt with stressors, the support they had from people in their lives, and the different behaviors of the autistic youth they care for. Using an existing measure, as well as an open-ended question, we asked caregivers about the most rewarding aspects of caring for their youth. When examining survey responses, we found that caregivers who reported receiving more help and support from their autistic youth also reported more positive aspects related to caregiving. In response to our study?s open-ended question, caregivers talked about the reward of seeing their youth grow and progress (e.g. learning new skills, reaching new milestones), described positive aspects of the relationship with their youth (e.g. sharing a special bond), and reflected on their own learning and personal growth as caregivers and people. Our findings highlight the positive, or rewarding, aspects of caregiving for autistic adolescents and young adults. This work will inform future work studying positive aspects of caring for autistic individuals and how this may impact caregivers' psychological well-being. En ligne : https://dx.doi.org/10.1177/13623613241272050 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544

"That he won't experience life like he should": Exploring worries of family caregivers of transition-age autistic youth / Grazia DIPIERRO ; Caroline Duke CHAIKIN ; Rita OBEID ; Kristen A. BERG ; Karen J. ISHLER in Research in Autism Spectrum Disorders, 109 (November 2023)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 109 (November 2023) . - 102283 Titre : "That he won't experience life like he should": Exploring worries of family caregivers of transition-age autistic youth Type de document : texte imprimé Auteurs : Grazia DIPIERRO, Auteur ; Caroline Duke CHAIKIN, Auteur ; Rita OBEID, Auteur ; Kristen A. BERG, Auteur ; Karen J. ISHLER, Auteur Article en page(s) : 102283 Langues : Anglais (eng) Mots-clés : Family caregivers  Caregiver burden  Worry  Transition to adulthood  Quantitative  Qualitative Index. décimale : PER Périodiques Résumé : Background Caregiver (CG) worry, a dimension of CG burden, has rarely been explored in CGs of transition-aged autistic youth. The present study investigated CG, youth, and service characteristics as potential predictors of CG worry and explored expressed concerns from CGs about their autistic youth and their care. Method Data were drawn from a study of 174 family CGs of transition-age autistic youth (age 16-30 years), living in a midwestern metropolitan area. Using a CG worries scale, CGs rated eight worries (e.g., worry about youth?s safety, etc.) experienced in the past six months. An OLS regression model of CG worry focused on predictors of CG characteristics (age, health, financial burden, involvement in youth?s care), youth characteristics (age, social engagement, adaptive functioning, problematic behavior) and service characteristics (access barriers and engagement in transition planning). CG responses to an open-ended question about their greatest worry regarding the youth and their care were analyzed thematically. Results CGs were mostly middle-aged mothers, caring for predominantly male (71.8%) ASD youth whose average age was 21. Regression models indicated that CG worry was predicted by problematic behaviors and barriers to accessing services. The expressed CG worries were grouped into four themes, including youth reliance on family CGs, possibilities for the youth?s future, youth relationships, and support for youth. Conclusions These findings support the need for improved access to services for transition-aged youth and raise awareness of the need for potential services and interventions to help families manage various worries during this time. En ligne : https://doi.org/10.1016/j.rasd.2023.102283 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518 [article] "That he won't experience life like he should": Exploring worries of family caregivers of transition-age autistic youth [texte imprimé] / Grazia DIPIERRO, Auteur ; Caroline Duke CHAIKIN, Auteur ; Rita OBEID, Auteur ; Kristen A. BERG, Auteur ; Karen J. ISHLER, Auteur . - 102283. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 109 (November 2023) . - 102283 Mots-clés : Family caregivers  Caregiver burden  Worry  Transition to adulthood  Quantitative  Qualitative Index. décimale : PER Périodiques Résumé : Background Caregiver (CG) worry, a dimension of CG burden, has rarely been explored in CGs of transition-aged autistic youth. The present study investigated CG, youth, and service characteristics as potential predictors of CG worry and explored expressed concerns from CGs about their autistic youth and their care. Method Data were drawn from a study of 174 family CGs of transition-age autistic youth (age 16-30 years), living in a midwestern metropolitan area. Using a CG worries scale, CGs rated eight worries (e.g., worry about youth?s safety, etc.) experienced in the past six months. An OLS regression model of CG worry focused on predictors of CG characteristics (age, health, financial burden, involvement in youth?s care), youth characteristics (age, social engagement, adaptive functioning, problematic behavior) and service characteristics (access barriers and engagement in transition planning). CG responses to an open-ended question about their greatest worry regarding the youth and their care were analyzed thematically. Results CGs were mostly middle-aged mothers, caring for predominantly male (71.8%) ASD youth whose average age was 21. Regression models indicated that CG worry was predicted by problematic behaviors and barriers to accessing services. The expressed CG worries were grouped into four themes, including youth reliance on family CGs, possibilities for the youth?s future, youth relationships, and support for youth. Conclusions These findings support the need for improved access to services for transition-aged youth and raise awareness of the need for potential services and interventions to help families manage various worries during this time. En ligne : https://doi.org/10.1016/j.rasd.2023.102283 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518

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