Defining the core components of Family Navigation for autism spectrum disorder / Sarabeth BRODER-FINGERT in Autism, 24-2 (February 2020)  

Public ISBD [article]  inAutism > 24-2 (February 2020) . - p.526-530 Titre : Defining the core components of Family Navigation for autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Sarabeth BRODER-FINGERT, Auteur ; Nicole A. STADNICK, Auteur ; Emily HICKEY, Auteur ; Julia GOUPIL, Auteur ; Yaminette DIAZ LINDHART, Auteur ; Emily FEINBERG, Auteur Article en page(s) : p.526-530 Langues : Anglais (eng) Mots-clés : Family Navigation  autism  care coordination Index. décimale : PER Périodiques Résumé : This study aimed to define the core components of Family Navigation for autism spectrum disorder, a promising intervention to reduce disparities in care for this population. Teams from four trials of Family Navigation for autism spectrum disorder completed the Template for Intervention Description and Replication checklist to outline intervention components. Through intervention component analysis and qualitative synthesis, we identified 11 core components across three domains: Training and Supervision, Navigator Tools, and Navigator Activities. We discuss the importance of identifying these core components and implications for future research and practice. En ligne : http://dx.doi.org/10.1177/1362361319864079 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=415 [article] Defining the core components of Family Navigation for autism spectrum disorder [Texte imprimé et/ou numérique] / Sarabeth BRODER-FINGERT, Auteur ; Nicole A. STADNICK, Auteur ; Emily HICKEY, Auteur ; Julia GOUPIL, Auteur ; Yaminette DIAZ LINDHART, Auteur ; Emily FEINBERG, Auteur . - p.526-530. Langues : Anglais (eng) in Autism > 24-2 (February 2020) . - p.526-530 Mots-clés : Family Navigation  autism  care coordination Index. décimale : PER Périodiques Résumé : This study aimed to define the core components of Family Navigation for autism spectrum disorder, a promising intervention to reduce disparities in care for this population. Teams from four trials of Family Navigation for autism spectrum disorder completed the Template for Intervention Description and Replication checklist to outline intervention components. Through intervention component analysis and qualitative synthesis, we identified 11 core components across three domains: Training and Supervision, Navigator Tools, and Navigator Activities. We discuss the importance of identifying these core components and implications for future research and practice. En ligne : http://dx.doi.org/10.1177/1362361319864079 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=415

Family Impact During the Time Between Autism Screening and Definitive Diagnosis / Emily J. HICKEY in Journal of Autism and Developmental Disorders, 52-11 (November 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4908-4920 Titre : Family Impact During the Time Between Autism Screening and Definitive Diagnosis Type de document : Texte imprimé et/ou numérique Auteurs : Emily J. HICKEY, Auteur ; Emily FEINBERG, Auteur ; Jocelyn KUHN, Auteur ; Howard J. CABRAL, Auteur ; Sarabeth BRODER-FINGERT, Auteur Article en page(s) : p.4908-4920 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/diagnosis/epidemiology  Autistic Disorder  Child  Child Behavior  Family  Humans  Parents  Autism Spectrum Disorder  Autism risk  Child functioning  Developmental disability  Difficult child behavior  Family impact Index. décimale : PER Périodiques Résumé : Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis-a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274]=5.82, p=.017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6]=13.11, p < .001) than later diagnostic group (t[6]=- 2.10, p=.037), and child functioning did not predict family impact (t[6]=-0.31, p=.76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support. En ligne : http://dx.doi.org/10.1007/s10803-021-05354-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489 [article] Family Impact During the Time Between Autism Screening and Definitive Diagnosis [Texte imprimé et/ou numérique] / Emily J. HICKEY, Auteur ; Emily FEINBERG, Auteur ; Jocelyn KUHN, Auteur ; Howard J. CABRAL, Auteur ; Sarabeth BRODER-FINGERT, Auteur . - p.4908-4920. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4908-4920 Mots-clés : Autism Spectrum Disorder/diagnosis/epidemiology  Autistic Disorder  Child  Child Behavior  Family  Humans  Parents  Autism Spectrum Disorder  Autism risk  Child functioning  Developmental disability  Difficult child behavior  Family impact Index. décimale : PER Périodiques Résumé : Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis-a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274]=5.82, p=.017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6]=13.11, p < .001) than later diagnostic group (t[6]=- 2.10, p=.037), and child functioning did not predict family impact (t[6]=-0.31, p=.76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support. En ligne : http://dx.doi.org/10.1007/s10803-021-05354-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489

Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder / Emily J. HICKEY in Autism, 26-6 (August 2022)  

Public ISBD [article]  inAutism > 26-6 (August 2022) . - p.1694-1708 Titre : Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Emily J. HICKEY, Auteur ; Michelle STRANSKY, Auteur ; Jocelyn KUHN, Auteur ; Jessica E. ROSENBERG, Auteur ; Howard J. CABRAL, Auteur ; Carol WEITZMAN, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Emily FEINBERG, Auteur Article en page(s) : p.1694-1708 Langues : Anglais (eng) Mots-clés : Adaptation, Psychological  Autism Spectrum Disorder  Child  Humans  Parenting  Parents  Stress, Psychological  autism risk  autism spectrum disorders  coping  developmental disabilities  family impact  parenting stress  trajectories Index. décimale : PER Périodiques Résumé : Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time. These differences shed light on the unique experiences and strengths of Hispanic families demonstrate. Interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience. En ligne : http://dx.doi.org/10.1177/13623613211001611 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484 [article] Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder [Texte imprimé et/ou numérique] / Emily J. HICKEY, Auteur ; Michelle STRANSKY, Auteur ; Jocelyn KUHN, Auteur ; Jessica E. ROSENBERG, Auteur ; Howard J. CABRAL, Auteur ; Carol WEITZMAN, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Emily FEINBERG, Auteur . - p.1694-1708. Langues : Anglais (eng) in Autism > 26-6 (August 2022) . - p.1694-1708 Mots-clés : Adaptation, Psychological  Autism Spectrum Disorder  Child  Humans  Parenting  Parents  Stress, Psychological  autism risk  autism spectrum disorders  coping  developmental disabilities  family impact  parenting stress  trajectories Index. décimale : PER Périodiques Résumé : Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time. These differences shed light on the unique experiences and strengths of Hispanic families demonstrate. Interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience. En ligne : http://dx.doi.org/10.1177/13623613211001611 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484

The influence of loss to follow-up in autism screening research: Taking stock and moving forward / R. Christopher SHELDRICK in Journal of Child Psychology and Psychiatry, 65-5 (May 2024)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 65-5 (May 2024) . - p.656-667 Titre : The influence of loss to follow-up in autism screening research: Taking stock and moving forward Type de document : Texte imprimé et/ou numérique Auteurs : R. Christopher SHELDRICK, Auteur ; Jessica L. HOOKER, Auteur ; Alice S. CARTER, Auteur ; Emily FEINBERG, Auteur ; Lisa A. CROEN, Auteur ; Jocelyn KUHN, Auteur ; Elizabeth SLATE, Auteur ; Amy M. WETHERBY, Auteur Article en page(s) : p.656-667 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Background How best to improve the early detection of autism spectrum disorder (ASD) is the subject of significant controversy. Some argue that universal ASD screeners are highly accurate, whereas others argue that evidence for this claim is insufficient. Relatedly, there is no clear consensus as to the optimal role of screening for making referral decisions for evaluation and treatment. Published screening research can meaningfully inform these questions-but only through careful consideration of children who do not complete diagnostic follow-up. Methods We developed two simulation models that re-analyze the results of a large-scale validation study of the M-CHAT-R/F by Robins et al. (2014, Pediatrics, 133, 37). Model #1 re-analyzes screener accuracy across six scenarios, each reflecting different assumptions regarding loss to follow-up. Model #2 builds on this by closely examining differential attrition at each point of the multi-step detection process. Results Estimates of sensitivity ranged from 40% to 94% across scenarios, demonstrating that estimates of accuracy depend on assumptions regarding the diagnostic status of children who were lost to follow-up. Across a range of plausible assumptions, data also suggest that children with undiagnosed ASD may be more likely to complete follow-up than children without ASD, highlighting the role of clinicians and caregivers in the detection process. Conclusions Using simulation modeling as a quantitative method to examine potential bias in screening studies, analyses suggest that ASD screening tools may be less accurate than is often reported. Models also demonstrate the critical importance of every step in a detection process-including steps that determine whether children should complete an additional evaluation. We conclude that parent and clinician decision-making regarding follow-up may contribute more to detection than is widely assumed. En ligne : https://doi.org/10.1111/jcpp.13867 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=526 [article] The influence of loss to follow-up in autism screening research: Taking stock and moving forward [Texte imprimé et/ou numérique] / R. Christopher SHELDRICK, Auteur ; Jessica L. HOOKER, Auteur ; Alice S. CARTER, Auteur ; Emily FEINBERG, Auteur ; Lisa A. CROEN, Auteur ; Jocelyn KUHN, Auteur ; Elizabeth SLATE, Auteur ; Amy M. WETHERBY, Auteur . - p.656-667. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 65-5 (May 2024) . - p.656-667 Index. décimale : PER Périodiques Résumé : Background How best to improve the early detection of autism spectrum disorder (ASD) is the subject of significant controversy. Some argue that universal ASD screeners are highly accurate, whereas others argue that evidence for this claim is insufficient. Relatedly, there is no clear consensus as to the optimal role of screening for making referral decisions for evaluation and treatment. Published screening research can meaningfully inform these questions-but only through careful consideration of children who do not complete diagnostic follow-up. Methods We developed two simulation models that re-analyze the results of a large-scale validation study of the M-CHAT-R/F by Robins et al. (2014, Pediatrics, 133, 37). Model #1 re-analyzes screener accuracy across six scenarios, each reflecting different assumptions regarding loss to follow-up. Model #2 builds on this by closely examining differential attrition at each point of the multi-step detection process. Results Estimates of sensitivity ranged from 40% to 94% across scenarios, demonstrating that estimates of accuracy depend on assumptions regarding the diagnostic status of children who were lost to follow-up. Across a range of plausible assumptions, data also suggest that children with undiagnosed ASD may be more likely to complete follow-up than children without ASD, highlighting the role of clinicians and caregivers in the detection process. Conclusions Using simulation modeling as a quantitative method to examine potential bias in screening studies, analyses suggest that ASD screening tools may be less accurate than is often reported. Models also demonstrate the critical importance of every step in a detection process-including steps that determine whether children should complete an additional evaluation. We conclude that parent and clinician decision-making regarding follow-up may contribute more to detection than is widely assumed. En ligne : https://doi.org/10.1111/jcpp.13867 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=526

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