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

Perceived negative impact of caregiving demands in parents of individuals with autism spectrum disorders from 9 to 25 years of age / Kourtney CHRISTOPHER in Research in Autism Spectrum Disorders, 106 (August 2023)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 106 (August 2023) . - 102203 Titre : Perceived negative impact of caregiving demands in parents of individuals with autism spectrum disorders from 9 to 25 years of age Type de document : Texte imprimé et/ou numérique Auteurs : Kourtney CHRISTOPHER, Auteur ; Maira TAFOLLA, Auteur ; Kyle STERRETT, Auteur ; Rebecca ELIAS, Auteur ; Catherine LORD, Auteur Année de publication : 2023 Article en page(s) : 102203 Langues : Anglais (eng) Mots-clés : Perceived negative impact of caregiving  Caregivers  ASD  Adolescence  Adulthood  Longitudinal Index. décimale : PER Périodiques Résumé : Background Caregivers of autistic individuals often report higher levels of perceived negative impact of caregiving. We know very little about the trajectories of caregivers perceived negative impact related to caregiving demands over time in autism. Method The aim of this study was to identify trajectories of perceived negative impact related to parenting of caregivers of autistic individuals and other developmental delays from childhood through emerging adulthood (n = 209). We also explored the factors that predict trajectories of caregiver perceived negative impact including the characteristics of the autistic individuals at age 9 (i.e., social affect, restricted and repetitive behaviors, irritability, hyperactivity, daily living skills and cognitive ability) and caregivers' race, education, social support, and study site. Results Latent class growth modelling yielded three negative impact of caregiving classes: (1) a low impact class that decreased over time (n = 68, 32.54 %), (2) a medium impact class that increased in negative impact during adolescence and decreased in emerging adulthood (n = 98, 46.98 %), and (3) a high impact class that decreased over time (n = 43, 20.57 %). Across all classes, reductions in negative impact of caregiving over time were reported in emerging adulthood, but the high and medium impact groups were still elevated in comparison to the low impact class at the last timepoint. Caregivers of children with less irritability and parent-reported restricted and repetitive behaviors were more likely to belong to the low negative impact group. Caregivers who were African American, had lower educational attainment and those with social support were more likely to belong to the low negative impact group. Conclusions These findings highlight the importance of continued support for caregivers of autistic individuals over time. The influence of race and education on levels of caregiver perceived negative impact of caregiving are discussed further. En ligne : https://doi.org/10.1016/j.rasd.2023.102203 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509 [article] Perceived negative impact of caregiving demands in parents of individuals with autism spectrum disorders from 9 to 25 years of age [Texte imprimé et/ou numérique] / Kourtney CHRISTOPHER, Auteur ; Maira TAFOLLA, Auteur ; Kyle STERRETT, Auteur ; Rebecca ELIAS, Auteur ; Catherine LORD, Auteur . - 2023 . - 102203. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 106 (August 2023) . - 102203 Mots-clés : Perceived negative impact of caregiving  Caregivers  ASD  Adolescence  Adulthood  Longitudinal Index. décimale : PER Périodiques Résumé : Background Caregivers of autistic individuals often report higher levels of perceived negative impact of caregiving. We know very little about the trajectories of caregivers perceived negative impact related to caregiving demands over time in autism. Method The aim of this study was to identify trajectories of perceived negative impact related to parenting of caregivers of autistic individuals and other developmental delays from childhood through emerging adulthood (n = 209). We also explored the factors that predict trajectories of caregiver perceived negative impact including the characteristics of the autistic individuals at age 9 (i.e., social affect, restricted and repetitive behaviors, irritability, hyperactivity, daily living skills and cognitive ability) and caregivers' race, education, social support, and study site. Results Latent class growth modelling yielded three negative impact of caregiving classes: (1) a low impact class that decreased over time (n = 68, 32.54 %), (2) a medium impact class that increased in negative impact during adolescence and decreased in emerging adulthood (n = 98, 46.98 %), and (3) a high impact class that decreased over time (n = 43, 20.57 %). Across all classes, reductions in negative impact of caregiving over time were reported in emerging adulthood, but the high and medium impact groups were still elevated in comparison to the low impact class at the last timepoint. Caregivers of children with less irritability and parent-reported restricted and repetitive behaviors were more likely to belong to the low negative impact group. Caregivers who were African American, had lower educational attainment and those with social support were more likely to belong to the low negative impact group. Conclusions These findings highlight the importance of continued support for caregivers of autistic individuals over time. The influence of race and education on levels of caregiver perceived negative impact of caregiving are discussed further. En ligne : https://doi.org/10.1016/j.rasd.2023.102203 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509

The Implications of Parent-Reported Emotional and Behavioral Problems on the Modified Checklist for Autism in Toddlers / Kourtney CHRISTOPHER in Journal of Autism and Developmental Disorders, 51-3 (March 2021)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-3 (March 2021) . - p.884-891 Titre : The Implications of Parent-Reported Emotional and Behavioral Problems on the Modified Checklist for Autism in Toddlers Type de document : Texte imprimé et/ou numérique Auteurs : Kourtney CHRISTOPHER, Auteur ; Somer L. BISHOP, Auteur ; Laura ARNSTEIN CARPENTER, Auteur ; Zachary WARREN, Auteur ; Stephen M. KANNE, Auteur Article en page(s) : p.884-891 Langues : Anglais (eng) Mots-clés : Asd  Autism  Cbcl  Ebp  Emotional Behavioral Problems  M-chat-r/f  Screening measure  Sensitivity  Specificity Index. décimale : PER Périodiques Résumé : Studies have shown that Autism Spectrum Disorder (ASD) screening and diagnostic instruments may be affected by the presence of emotional and behavior problems (EBPs). This study assessed the impact of EBPs on the Modified Checklist for Autism in Toddlers, Revised with Follow-up (M-CHAT-R/F). Participants included 290 children, 18-48 months of age, referred for ASD-related concerns. Those diagnosed with ASD had significantly lower externalizing EBPs compared to those who were not diagnosed with ASD. More externalizing symptoms and younger age were significantly predictive of an M-CHAT-R/F final score. Sensitivity and specificity was impacted by the age of the child. These results suggest that combining measures that assess EBPs and autism core symptoms may improve accuracy in this referred population. En ligne : http://dx.doi.org/10.1007/s10803-020-04469-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=443 [article] The Implications of Parent-Reported Emotional and Behavioral Problems on the Modified Checklist for Autism in Toddlers [Texte imprimé et/ou numérique] / Kourtney CHRISTOPHER, Auteur ; Somer L. BISHOP, Auteur ; Laura ARNSTEIN CARPENTER, Auteur ; Zachary WARREN, Auteur ; Stephen M. KANNE, Auteur . - p.884-891. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 51-3 (March 2021) . - p.884-891 Mots-clés : Asd  Autism  Cbcl  Ebp  Emotional Behavioral Problems  M-chat-r/f  Screening measure  Sensitivity  Specificity Index. décimale : PER Périodiques Résumé : Studies have shown that Autism Spectrum Disorder (ASD) screening and diagnostic instruments may be affected by the presence of emotional and behavior problems (EBPs). This study assessed the impact of EBPs on the Modified Checklist for Autism in Toddlers, Revised with Follow-up (M-CHAT-R/F). Participants included 290 children, 18-48 months of age, referred for ASD-related concerns. Those diagnosed with ASD had significantly lower externalizing EBPs compared to those who were not diagnosed with ASD. More externalizing symptoms and younger age were significantly predictive of an M-CHAT-R/F final score. Sensitivity and specificity was impacted by the age of the child. These results suggest that combining measures that assess EBPs and autism core symptoms may improve accuracy in this referred population. En ligne : http://dx.doi.org/10.1007/s10803-020-04469-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=443

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