Analyzing the Quality of Life in Individuals with Fragile X Syndrome in Relation to Sleep and Mental Health / Kerri WHITLOCK ; Cory ROSENFELT ; Julie SHATTO ; Brittany FINLAY ; Jennifer ZWICKER ; Sarah LIPPE ; Sébastien JACQUEMONT ; Randi J. HAGERMAN ; Kara MURIAS ; Francois V. BOLDUC in Journal of Autism and Developmental Disorders, 55-5 (May 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1910-1922 Titre : Analyzing the Quality of Life in Individuals with Fragile X Syndrome in Relation to Sleep and Mental Health Type de document : texte imprimé Auteurs : Kerri WHITLOCK, Auteur ; Cory ROSENFELT, Auteur ; Julie SHATTO, Auteur ; Brittany FINLAY, Auteur ; Jennifer ZWICKER, Auteur ; Sarah LIPPE, Auteur ; Sébastien JACQUEMONT, Auteur ; Randi J. HAGERMAN, Auteur ; Kara MURIAS, Auteur ; Francois V. BOLDUC, Auteur Article en page(s) : p.1910-1922 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : The purpose of this paper was to examine the physical, emotional, social and school functioning domains of quality of life of individuals with Fragile X Syndrome, in relation to mental health and sleep patterns to gain a better understanding of how these aspects are affected by the disorder. This study included 119 individuals with Fragile X Syndrome who were given different cognitive examinations by a neuropsychologist or by parent-proxy questionnaires. This study focused on the Pediatric Quality of Life Inventory (PedsQoL), the Anxiety, Depression and Mood Scale (ADAMS), the Children s Sleep Habits Questionnaire (CSHQ), but did include other cognitive tests (Vineland Adaptive Behaviour Scales, Nonverbal IQ, Autism Diagnostic Observation Schedule). We identified significant associations between decreases in emotional, social and school domains of PedsQoL and the ADAMS subtests of Generalized Anxiety, Manic/Hyperactivity and Obsessive/Compulsivity, with the subtest of Depressed Mood having associations with lower physical and emotional domains. We also identified a significant impact between CSHQ subtests of Sleep Anxiety, Night Wakings, Daytime Sleepiness, and Parasomnia with the emotional and school domains of PedsQoL. There were associations connecting school functioning with Bedtime Resistance, and additional associations connecting emotional functioning with Sleep Duration and Sleep Onset Delay. Physical functioning was also associated with Sleep Anxiety. Our study shows how mental health and sleep defects impact improper sleep patterns and mental health which leads to decreases in the quality of life for individuals with FXS, and how it is important to screen for these symptoms in order to alleviate issues. En ligne : https://doi.org/10.1007/s10803-024-06317-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Analyzing the Quality of Life in Individuals with Fragile X Syndrome in Relation to Sleep and Mental Health [texte imprimé] / Kerri WHITLOCK, Auteur ; Cory ROSENFELT, Auteur ; Julie SHATTO, Auteur ; Brittany FINLAY, Auteur ; Jennifer ZWICKER, Auteur ; Sarah LIPPE, Auteur ; Sébastien JACQUEMONT, Auteur ; Randi J. HAGERMAN, Auteur ; Kara MURIAS, Auteur ; Francois V. BOLDUC, Auteur . - p.1910-1922. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1910-1922 Index. décimale : PER Périodiques Résumé : The purpose of this paper was to examine the physical, emotional, social and school functioning domains of quality of life of individuals with Fragile X Syndrome, in relation to mental health and sleep patterns to gain a better understanding of how these aspects are affected by the disorder. This study included 119 individuals with Fragile X Syndrome who were given different cognitive examinations by a neuropsychologist or by parent-proxy questionnaires. This study focused on the Pediatric Quality of Life Inventory (PedsQoL), the Anxiety, Depression and Mood Scale (ADAMS), the Children s Sleep Habits Questionnaire (CSHQ), but did include other cognitive tests (Vineland Adaptive Behaviour Scales, Nonverbal IQ, Autism Diagnostic Observation Schedule). We identified significant associations between decreases in emotional, social and school domains of PedsQoL and the ADAMS subtests of Generalized Anxiety, Manic/Hyperactivity and Obsessive/Compulsivity, with the subtest of Depressed Mood having associations with lower physical and emotional domains. We also identified a significant impact between CSHQ subtests of Sleep Anxiety, Night Wakings, Daytime Sleepiness, and Parasomnia with the emotional and school domains of PedsQoL. There were associations connecting school functioning with Bedtime Resistance, and additional associations connecting emotional functioning with Sleep Duration and Sleep Onset Delay. Physical functioning was also associated with Sleep Anxiety. Our study shows how mental health and sleep defects impact improper sleep patterns and mental health which leads to decreases in the quality of life for individuals with FXS, and how it is important to screen for these symptoms in order to alleviate issues. En ligne : https://doi.org/10.1007/s10803-024-06317-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

Autism Research Funding Allocation: Can Economics Tell Us If We Have Got It Right? / Jennifer D. ZWICKER in Autism Research, 7-6 (December 2014)  

Public ISBD [article]  inAutism Research > 7-6 (December 2014) . - p.704-711 Titre : Autism Research Funding Allocation: Can Economics Tell Us If We Have Got It Right? Type de document : texte imprimé Auteurs : Jennifer D. ZWICKER, Auteur ; J.C. Herbert EMERY, Auteur Article en page(s) : p.704-711 Langues : Anglais (eng) Mots-clés : autism  research funding  economic evaluation  funding allocation Index. décimale : PER Périodiques Résumé : There is a concern that the allocation of autism spectrum disorder (ASD) research funding may be misallocating resources, overemphasizing basic science at the expense of translational and clinical research. Anthony Bailey has proposed that an economic evaluation of autism research funding allocations could be beneficial for funding agencies by identifying under- or overfunded areas of research. In response to Bailey, we illustrate why economics cannot provide an objective, technical solution for identifying the “best” allocation of research resources. Economic evaluation has its greatest power as a late-stage research tool for interventions with identified objectives, outcomes, and data. This is not the case for evaluating whether research areas are over- or underfunded. Without an understanding of how research funding influences the likelihood and value of a discovery, or without a statement of the societal objectives for ASD research and level of risk aversion, economic analysis cannot provide a useful normative evaluation of ASD research. En ligne : http://dx.doi.org/10.1002/aur.1423 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=256 [article] Autism Research Funding Allocation: Can Economics Tell Us If We Have Got It Right? [texte imprimé] / Jennifer D. ZWICKER, Auteur ; J.C. Herbert EMERY, Auteur . - p.704-711. Langues : Anglais (eng) in Autism Research > 7-6 (December 2014) . - p.704-711 Mots-clés : autism  research funding  economic evaluation  funding allocation Index. décimale : PER Périodiques Résumé : There is a concern that the allocation of autism spectrum disorder (ASD) research funding may be misallocating resources, overemphasizing basic science at the expense of translational and clinical research. Anthony Bailey has proposed that an economic evaluation of autism research funding allocations could be beneficial for funding agencies by identifying under- or overfunded areas of research. In response to Bailey, we illustrate why economics cannot provide an objective, technical solution for identifying the “best” allocation of research resources. Economic evaluation has its greatest power as a late-stage research tool for interventions with identified objectives, outcomes, and data. This is not the case for evaluating whether research areas are over- or underfunded. Without an understanding of how research funding influences the likelihood and value of a discovery, or without a statement of the societal objectives for ASD research and level of risk aversion, economic analysis cannot provide a useful normative evaluation of ASD research. En ligne : http://dx.doi.org/10.1002/aur.1423 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=256

Employment, Education, and Income for Canadians with Developmental Disability: Analysis from the 2017 Canadian Survey on Disability / Craig W.M. SCOTT ; Jennifer D. ZWICKER in Journal of Autism and Developmental Disorders, 53-2 (February 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-2 (February 2023) . - p.580-592 Titre : Employment, Education, and Income for Canadians with Developmental Disability: Analysis from the 2017 Canadian Survey on Disability Type de document : texte imprimé Auteurs : Craig W.M. SCOTT, Auteur ; Jennifer D. ZWICKER, Auteur Article en page(s) : p.580-592 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : This study assessed needs and outcomes for people with developmental disability (DD) to understand the socioeconomic status of this group prior to implementation of the Accessible Canada Act in June 2019. The 2017 Canadian Survey on Disability (CSD) was used to analyze data for a sample of individuals with self-reported disability. Data related to employment, education, income, housing, caregivers, and use of government benefits is reported. Compared to the general Canadian public, persons with DD are less likely to: finish high-school or post-secondary education; participate in the labor force or be employed; and earn on average less/year in total income. To align with recent accessibility legislation, significant progress is needed to address disparities for people with DD. En ligne : https://doi.org/10.1007/s10803-020-04603-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=495 [article] Employment, Education, and Income for Canadians with Developmental Disability: Analysis from the 2017 Canadian Survey on Disability [texte imprimé] / Craig W.M. SCOTT, Auteur ; Jennifer D. ZWICKER, Auteur . - p.580-592. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-2 (February 2023) . - p.580-592 Index. décimale : PER Périodiques Résumé : This study assessed needs and outcomes for people with developmental disability (DD) to understand the socioeconomic status of this group prior to implementation of the Accessible Canada Act in June 2019. The 2017 Canadian Survey on Disability (CSD) was used to analyze data for a sample of individuals with self-reported disability. Data related to employment, education, income, housing, caregivers, and use of government benefits is reported. Compared to the general Canadian public, persons with DD are less likely to: finish high-school or post-secondary education; participate in the labor force or be employed; and earn on average less/year in total income. To align with recent accessibility legislation, significant progress is needed to address disparities for people with DD. En ligne : https://doi.org/10.1007/s10803-020-04603-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=495

Evaluation of employment-support services for adults with autism spectrum disorder / David B. NICHOLAS in Autism, 22-6 (August 2018)  

Public ISBD [article]  inAutism > 22-6 (August 2018) . - p.693-702 Titre : Evaluation of employment-support services for adults with autism spectrum disorder Type de document : texte imprimé Auteurs : David B. NICHOLAS, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Jennifer ZWICKER, Auteur ; Margaret E. CLARKE, Auteur ; Ramesh LAMSAL, Auteur ; Kevin P. STODDART, Auteur ; Cynthia CARROLL, Auteur ; Barbara MUSKAT, Auteur ; Margaret SPOELSTRA, Auteur ; Katelyn LOWE, Auteur Article en page(s) : p.693-702 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  employment  employment support Index. décimale : PER Périodiques Résumé : The employment rate among persons with autism spectrum disorder has been noted as unacceptably low. Employment-support services are increasingly linked to the potential for favorable job outcomes, yet little is known about employment-support practices and the outcome of these interventions. This mixed-methods study examined employment-support resources for persons with autism spectrum disorder. An online survey was completed by 137 senior clinicians or administrators in employment-support programs in Canada. Additionally, 122 follow-up interviews were conducted with individuals with autism spectrum disorder (n = 71) and their parents/caregivers (n = 51). Findings indicate that the quality and beneficial impact of employment-support services for adults with autism spectrum disorder may be more favorably perceived by employment-support personnel than by individuals with autism spectrum disorder and their families. Furthermore, employment-support personnel were more disparaging about autism spectrum disorder vocational support capacity within their community, compared to their own programs. Individuals with autism spectrum disorder and their families seek services that support both accessing and retaining employment. Capacity-building in employment support for youth and adults with autism spectrum disorder is recommended, based on a reported insufficiency of, and a lack of evidence guiding, existing services. Program recommendations and an emerging model for integrated vocational support in autism spectrum disorder are offered. En ligne : http://dx.doi.org/10.1177/1362361317702507 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=366 [article] Evaluation of employment-support services for adults with autism spectrum disorder [texte imprimé] / David B. NICHOLAS, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Jennifer ZWICKER, Auteur ; Margaret E. CLARKE, Auteur ; Ramesh LAMSAL, Auteur ; Kevin P. STODDART, Auteur ; Cynthia CARROLL, Auteur ; Barbara MUSKAT, Auteur ; Margaret SPOELSTRA, Auteur ; Katelyn LOWE, Auteur . - p.693-702. Langues : Anglais (eng) in Autism > 22-6 (August 2018) . - p.693-702 Mots-clés : autism spectrum disorders  employment  employment support Index. décimale : PER Périodiques Résumé : The employment rate among persons with autism spectrum disorder has been noted as unacceptably low. Employment-support services are increasingly linked to the potential for favorable job outcomes, yet little is known about employment-support practices and the outcome of these interventions. This mixed-methods study examined employment-support resources for persons with autism spectrum disorder. An online survey was completed by 137 senior clinicians or administrators in employment-support programs in Canada. Additionally, 122 follow-up interviews were conducted with individuals with autism spectrum disorder (n = 71) and their parents/caregivers (n = 51). Findings indicate that the quality and beneficial impact of employment-support services for adults with autism spectrum disorder may be more favorably perceived by employment-support personnel than by individuals with autism spectrum disorder and their families. Furthermore, employment-support personnel were more disparaging about autism spectrum disorder vocational support capacity within their community, compared to their own programs. Individuals with autism spectrum disorder and their families seek services that support both accessing and retaining employment. Capacity-building in employment support for youth and adults with autism spectrum disorder is recommended, based on a reported insufficiency of, and a lack of evidence guiding, existing services. Program recommendations and an emerging model for integrated vocational support in autism spectrum disorder are offered. En ligne : http://dx.doi.org/10.1177/1362361317702507 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=366

---

1 (1 - 4 / 4) Par page : 25 50 100 200