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"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)
[article]
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 et/ou numérique 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
in Research in Autism Spectrum Disorders > 109 (November 2023) . - 102283[article] "That he won't experience life like he should": Exploring worries of family caregivers of transition-age autistic youth [Texte imprimé et/ou numérique] / 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 Barriers to service and unmet need among autistic adolescents and young adults / Karen J ISHLER in Autism, 27-7 (October 2023)
[article]
Titre : Barriers to service and unmet need among autistic adolescents and young adults Type de document : Texte imprimé et/ou numérique 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
in Autism > 27-7 (October 2023) . - p.1997-2010[article] Barriers to service and unmet need among autistic adolescents and young adults [Texte imprimé et/ou numérique] / 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