A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities / Elaine CLARKE ; Nicole ROSEN ; Sofi Gomez DE LA ROSA ; Nina MASJEDI ; Kourtney CHRISTOPHER ; Catherine LORD in Journal of Autism and Developmental Disorders, 54-9 (September 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-9 (September 2024) . - p.3225-3241 Titre : A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities Type de document : Texte imprimé et/ou numérique Auteurs : Elaine CLARKE, Auteur ; Nicole ROSEN, Auteur ; Sofi Gomez DE LA ROSA, Auteur ; Nina MASJEDI, Auteur ; Kourtney CHRISTOPHER, Auteur ; Catherine LORD, Auteur Article en page(s) : p.3225-3241 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Although caregiving responsibilities and need for support persist and evolve across the life course in families with autistic youth or youth with other developmental disabilities (DDs), little is known about support during their child?s adulthood years. Therefore, the present study used a mixed-methods approach to examine change and stability in formal and informal family support across the transition to adulthood. Caregivers of 126 individuals with autism or DDs completed a modified version of the Family Support Scale, including open-ended questions, at five time points from adolescence (age 16) into young adulthood (age 22). Caregivers reported that informal support from family members was the most frequently used, helpful, and valued source of support with relative stability across time. In contrast, the reported helpfulness, use, and value of formal support (e.g., professionals, schools) for caregivers declined over time. Qualitative content analyses revealed characteristics of highly valued support included support type (e.g., instrumental or emotional) and features of the support source (e.g., their understanding). There was a shift to valuing emotional support more than instrumental support over time, especially for caregivers of less able adults. Partnership and dependability emerged as highly valued features of the support source. These findings fit within a social convoy perspective and likely reflect the "service cliff" experienced by autistic individuals or people with DDs and their families. As social networks shrink over time and formal services are less readily available in adulthood, remaining sources of support, particularly from family members, become increasingly important. En ligne : https://doi.org/10.1007/s10803-023-06070-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=534 [article] A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities [Texte imprimé et/ou numérique] / Elaine CLARKE, Auteur ; Nicole ROSEN, Auteur ; Sofi Gomez DE LA ROSA, Auteur ; Nina MASJEDI, Auteur ; Kourtney CHRISTOPHER, Auteur ; Catherine LORD, Auteur . - p.3225-3241. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-9 (September 2024) . - p.3225-3241 Index. décimale : PER Périodiques Résumé : Although caregiving responsibilities and need for support persist and evolve across the life course in families with autistic youth or youth with other developmental disabilities (DDs), little is known about support during their child?s adulthood years. Therefore, the present study used a mixed-methods approach to examine change and stability in formal and informal family support across the transition to adulthood. Caregivers of 126 individuals with autism or DDs completed a modified version of the Family Support Scale, including open-ended questions, at five time points from adolescence (age 16) into young adulthood (age 22). Caregivers reported that informal support from family members was the most frequently used, helpful, and valued source of support with relative stability across time. In contrast, the reported helpfulness, use, and value of formal support (e.g., professionals, schools) for caregivers declined over time. Qualitative content analyses revealed characteristics of highly valued support included support type (e.g., instrumental or emotional) and features of the support source (e.g., their understanding). There was a shift to valuing emotional support more than instrumental support over time, especially for caregivers of less able adults. Partnership and dependability emerged as highly valued features of the support source. These findings fit within a social convoy perspective and likely reflect the "service cliff" experienced by autistic individuals or people with DDs and their families. As social networks shrink over time and formal services are less readily available in adulthood, remaining sources of support, particularly from family members, become increasingly important. En ligne : https://doi.org/10.1007/s10803-023-06070-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=534

The Brief Observation of Symptoms of Autism (BOSA): Development of a New Adapted Assessment Measure for Remote Telehealth Administration Through COVID-19 and Beyond / Deanna DOW in Journal of Autism and Developmental Disorders, 52-12 (December 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-12 (December 2022) . - p.5383-5394 Titre : The Brief Observation of Symptoms of Autism (BOSA): Development of a New Adapted Assessment Measure for Remote Telehealth Administration Through COVID-19 and Beyond Type de document : Texte imprimé et/ou numérique Auteurs : Deanna DOW, Auteur ; Alison HOLBROOK, Auteur ; Christina TOOLAN, Auteur ; Nicole MCDONALD, Auteur ; Kyle STERRETT, Auteur ; Nicole ROSEN, Auteur ; So Hyun KIM, Auteur ; Catherine LORD, Auteur Année de publication : 2022 Article en page(s) : p.5383-5394 Langues : Anglais (eng) Mots-clés : Humans  Autistic Disorder/diagnosis/psychology  Autism Spectrum Disorder/diagnosis/psychology  Reproducibility of Results  covid-19  Telemedicine  Assessment  Autism spectrum disorder  Diagnosis  Screening  the ADOS-2, SCQ and ADI-R. The BOSA is copyrighted by WPS because of its overlap  with the ADOS and BOSCC. Deanna Dow, Alison Holbrook, So Hyun Kim, and Catherine  Lord are authors of the BOSA, but it is not currently for sale and does not  yield any royalties at this time. Index. décimale : PER Périodiques Résumé : Interest in telehealth assessment for autism has increased due to COVID-19 and subsequent expansion of remote psychological services, though options that are easy for clinicians to adopt and available through the lifespan are limited. The Brief Observation of Symptoms of Autism (BOSA) provides a social context with standardized materials and activities that can be coded by clinicians trained in the Autism Diagnostic Observation Schedule. The current project examined psychometric properties to determine optimal use for each BOSA version. Three hundred and seven participants with 453 BOSAs were included to determine best performing items for algorithms, validity, sensitivity, specificity, recommended cut-offs, and proposed ranges of concern. While preliminary, the BOSA provides a promising new option for telehealth-administered assessment for autism. En ligne : http://dx.doi.org/10.1007/s10803-021-05395-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489 [article] The Brief Observation of Symptoms of Autism (BOSA): Development of a New Adapted Assessment Measure for Remote Telehealth Administration Through COVID-19 and Beyond [Texte imprimé et/ou numérique] / Deanna DOW, Auteur ; Alison HOLBROOK, Auteur ; Christina TOOLAN, Auteur ; Nicole MCDONALD, Auteur ; Kyle STERRETT, Auteur ; Nicole ROSEN, Auteur ; So Hyun KIM, Auteur ; Catherine LORD, Auteur . - 2022 . - p.5383-5394. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-12 (December 2022) . - p.5383-5394 Mots-clés : Humans  Autistic Disorder/diagnosis/psychology  Autism Spectrum Disorder/diagnosis/psychology  Reproducibility of Results  covid-19  Telemedicine  Assessment  Autism spectrum disorder  Diagnosis  Screening  the ADOS-2, SCQ and ADI-R. The BOSA is copyrighted by WPS because of its overlap  with the ADOS and BOSCC. Deanna Dow, Alison Holbrook, So Hyun Kim, and Catherine  Lord are authors of the BOSA, but it is not currently for sale and does not  yield any royalties at this time. Index. décimale : PER Périodiques Résumé : Interest in telehealth assessment for autism has increased due to COVID-19 and subsequent expansion of remote psychological services, though options that are easy for clinicians to adopt and available through the lifespan are limited. The Brief Observation of Symptoms of Autism (BOSA) provides a social context with standardized materials and activities that can be coded by clinicians trained in the Autism Diagnostic Observation Schedule. The current project examined psychometric properties to determine optimal use for each BOSA version. Three hundred and seven participants with 453 BOSAs were included to determine best performing items for algorithms, validity, sensitivity, specificity, recommended cut-offs, and proposed ranges of concern. While preliminary, the BOSA provides a promising new option for telehealth-administered assessment for autism. En ligne : http://dx.doi.org/10.1007/s10803-021-05395-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489

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