20 research outputs found

    Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities

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    IntroductionThe UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child's symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers’ experiences can promote the development of tailored public supports for these families following a public health crisis.MethodsOnline survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families’ and youths’ experiences during the same period.ResultsFive hundred and seventy-six (N = 576) participants answered open-ended questions. Barriers to coping included family mental health issues, concerns about the youths’ regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child's resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 policies effectively addressed caregiver-identified barriers, while some restrictions hindered access to facilitators.ConclusionPrioritizing needs of families of youths with DDDs during public health emergencies can significantly impact their experiences and mental health. Enhancing financial benefits, providing telehealth services, and creating inclusive public play spaces are priority areas as we navigate the post-pandemic landscape

    THE CHALLENGES OF CAREGIVERS OF CHILDREN WITH AUTISM SPECTRUM DISORDERS COMORBIDITY DURING THE COVID-19 PANDEMIC IN SERBIA

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    Background: Children with Autism Spectrum Disorders (ASD) experience significantly higher prevalence of other mental disorders, which amplifies their need for overall support. The outbreak of novel coronavirus (COVID-19) resulted in restrictions and limited access to different services with great challenge for families and children with ASD. Subjects and methods: We used an electronic SurveyMonkey questionnaire to examine the experiences of 114 caregivers of children with ASD. We compared: (a) level of support by the child’s school, changes in child behavior, and priority needs for families of ASD and ASD with comorbidities (ASD+) children, during pandemic, and (b) developmental history and diagnosis for ASD and ASD+ children before the pandemic. Results: Our research shows significant behavioral difficulties in the population with ASD and ASD+ that arose in the field of altered living conditions and overall functioning during the COVID-19 pandemic. Statistically significant results comparing ASD to ASD+ children we found in area of getting additional help and support before the outbreak of the pandemic (47.1% vs 16.0%, p=0.002), as well as in worsening of sleep problems, statistically significant more common in children with ASD+ (ASD+ 47.7% vs. ASD 25.7%, p=0.046). Conclusions: Our findings can contribute to the faster development and implementation of protocols for dealing with situations such as pandemics, related to the vulnerable population of children with ASD and their caregivers

    Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities

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    Introduction: The UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child's symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers’ experiences can promote the development of tailored public supports for these families following a public health crisis. Methods: Online survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families’ and youths’ experiences during the same period. Results: Five hundred and seventy-six (N = 576) participants answered open-ended questions. Barriers to coping included family mental health issues, concerns about the youths’ regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child's resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 policies effectively addressed caregiver-identified barriers, while some restrictions hindered access to facilitators. Conclusion: Prioritizing needs of families of youths with DDDs during public health emergencies can significantly impact their experiences and mental health. Enhancing financial benefits, providing telehealth services, and creating inclusive public play spaces are priority areas as we navigate the post-pandemic landscape

    Allelic heterogeneity and abnormal vesicle recycling in PLAA-related neurodevelopmental disorders

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    The human PLAA gene encodes Phospholipase-A2-Activating-Protein (PLAA) involved in trafficking of membrane proteins. Through its PUL domain (PLAP, Ufd3p, and Lub1p), PLAA interacts with p97/VCP modulating synaptic vesicles recycling. Although few families carrying biallelic PLAA variants were reported with progressive neurodegeneration, consequences of monoallelic PLAA variants have not been elucidated. Using exome or genome sequencing we identified PLAA de-novo missense variants, affecting conserved residues within the PUL domain, in children affected with neurodevelopmental disorders (NDDs), including psychomotor regression, intellectual disability (ID) and autism spectrum disorders (ASDs). Computational and in-vitro studies of the identified variants revealed abnormal chain arrangements at C-terminal and reduced PLAA-p97/VCP interaction, respectively. These findings expand both allelic and phenotypic heterogeneity associated to PLAA-related neurological disorders, highlighting perturbed vesicle recycling as a potential disease mechanism in NDDs due to genetic defects of PLAA

    The role of intracortical inhibition in self-reported and exercise-induced fatigue in multiple sclerosis

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    Multiple sclerosis (MS) is a disease in which the myelin sheath covering of axons is damaged. Fatigue, a common symptom of MS, is a multidimensional concept encompassing a subjective lack of energy and fatigability i.e. a central and peripheral decline in motor performance. Reduced intracortical inhibition correlates with greater self-reported fatigue in MS patients but whether it relates to central and peripheral fatigability is unknown. The project's purpose was to determine the contribution of reduced intracortical inhibition to the different fatigue dimensions among MS patients. The project also explored if MS patients have lower levels of intracortical inhibition than healthy controls after controlling for size of motor-evoked potentials (MEPs). Intracortical inhibition, the predictor variable in the regression analyses, was measured in 31 right-handed patients with relapsing-remitting MS using two TMS methods (short-interval intracortical inhibition ratios and contralateral silent periods) over the primary motor cortex representation of the right first dorsal interosseus muscle. The outcome variables were as follows: a) Self-reported fatigue as reported on a Rasch-analyzed composite fatigue scale, b) central fatigability, the latency for the motor threshold to return to baseline and the reduction in MEPs after a maximal contraction task, and c) peripheral fatigability, the decline in muscle electromyographic signal post exercise. Intracortical inhibition in MS patients was also compared to healthy controls after controlling for MEP size in a regression analysis. Among MS patients, intracortical inhibition did not predict self-reported fatigue, ps > .37. Intracortical inhibition also did not correlate with central or peripheral motor fatigability, ps > .20. Small MEPs were related to greater short-interval intracortical inhibition ratios (or less inhibition), r = -0.41, p < .02. However, MS patients showed normal levels of intracortical inhibition even without controlling for MEP size, ps > 0.08. Intracortical inhibition may not be the underlying cortical hyperactivity in MS patients with high fatigue. Lower levels of intracortical inhibition also do not lead to greater central and peripheral motor fatigability. The effect of small MEPs on intracortical inhibition should be controlled by stimulating at a higher intensity relative to the motor threshold among MS patients.La fatigue, un symptôme fréquent de la sclérose en plaques (SP), est un concept multidimensionnel qui englobe un manque subjectif d'énergie et de la fatigabilité, soit une baisse centrale et périphérique de la capacité motrice. L'inhibition intracorticale réduite est en corrélation avec une plus grande fatigue rapportée chez les patients SP, mais le fait de savoir si cela se rapporte à la fatigabilité centrale et périphérique est inconnu. Le but du projet était de déterminer la contribution de l'inhibition intracorticale réduite aux différentes dimensions de la fatigue chez les patients atteints de SP. Le projet a également exploré si les patients atteints de SP ont des niveaux inférieurs d'inhibition intracorticale que les témoins en bonne santé après avoir contrôlé la taille des potentiels évoqués moteurs (PEMs). L'inhibition intracorticale, la variable prédictive dans les analyses de régression, a été mesurée sur 31 patients droitiers atteints de SP cyclique (récurrente-rémittente) en utilisant deux méthodes TMS (les ratios d'inhibition intracorticale à court intervalle et les périodes de silence controlatérales) sur la représentation du cortex moteur primaire du premier muscle interosseux dorsal droit. Les variables des résultats étaient comme suit: a) fatigue auto-déclarée, telle que rapporté par l'analyse, sur le modèle de Rasch, de l'échelle de fatigue composée, b) fatigabilité centrale, le temps de latence pour que le seuil minimum moteur revienne aux valeurs de base et la réduction des PEMs après une tâche de contraction maximale, et c) la fatigabilité périphérique, une baisse dans le signal électromyographique du muscle après exercice. L'inhibition intracorticale chez les patients SP a également été comparée à des témoins en bonne santé après avoir contrôlé la taille du PEM dans une analyse de régression. Parmi les patients atteints de SP, l'inhibition intracorticale n'a pas prédit de fatigue rapportée, ps> .37. L'inhibition intracorticale n'est pas non plus en corrélation avec la fatigabilité motrice centrale ou périphérique, ps> .20. De faibles PEMs étaient liés à de plus grands ratios d'inhibition intracorticale à court intervalle (ou moins d'inhibition), r = -0,41, p <.02. Toutefois, les patients atteints de SP ont montré des niveaux normaux d'inhibition intracorticale même sans avoir contrôlé la taille du PEM, ps> 0,08. L'inhibition intracorticale peut ne pas être le mécanisme sous-jacent pour l'hyperactivité corticale chez les patients atteints de SP avec fatigue élevée. Des niveaux inférieurs d'inhibition intracorticale n'ont également pas mené à une plus grande fatigabilité motrice centrale et périphérique. L'effet de faibles PEMs sur l'inhibition intracorticale devrait être contrôlée par la stimulation à une intensité plus élevée par rapport au seuil minimum moteur chez les patients atteints de SP

    At the cross-roads of participatory research and biomarker discovery in autism: the need for empirical data

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    Identifying biomarkers for autism can improve outcomes for those affected by autism. Engaging the diverse stakeholders in the research process using community-based participatory research (CBPR) can accelerate biomarker discovery into clinical applications. However, there are limited examples of stakeholder involvement in autism research, possibly due to conceptual and practical concerns. We evaluate the applicability of CBPR principles to biomarker discovery in autism and critically review empirical studies adopting these principles

    Enhancing the Impact of Genomics Research in Autism through Integration of Research Results into Routine Care Pathways—A Case Series

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    The return of genetic results (RoR) to participants, enrolled as children, in autism research remains a complex process. Existing recommendations offer limited guidance on the use of genetic research results for clinical care. We highlight current challenges with RoR and illustrate how the use of a guiding framework drawn from existing literature facilitates RoR and the clinical integration of genetic research results. We report a case series (n = 16) involving the return of genetic results to participants in large genomics studies in Autism Spectrum Disorders (ASD). We outline the framework that guided RoR and facilitated integration into clinical care pathways. We highlight specific cases to illustrate challenges that were, or could have been, resolved through this framework. The case series demonstrates the ethical, clinical and practical difficulties of RoR in ASD genomic studies for participants enrolled as children. Challenges were resolved using pre-established framework to guide RoR and incorporate research genetic results into clinical care. We suggest that optimal use of genetic research results relies on their integration into individualized care pathways for participants. We offer a framework that attempts to bridge the gap between research and healthcare in ASD

    Factors associated with resilience among children and youths with disability during the COVID-19 pandemic

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    There is evidence of negative impact of social distancing and confinement measures to manage the COVID-19 pandemic on children, including increased anxiety and depression and behaviour difficulties. Paradoxically, positive impacts like increased support and more self-care activities have also been documented. Little is known about the impact of the COVID-19 pandemic on the children with disability and the potential role of familial, environmental, and biological factors on mitigating this impact. The aims of the study were 1) identifying profiles of functioning across multiple domains during the COVID-19 pandemic and 2) examining the extent to which parenting self-efficacy, support in accessing schooling, and type of diagnosis predict the likelihood of resilience among children with disability, after controlling for household income and single-parent status. An online survey developed from COVID-19 guidance recommendations, was available from June 11- July 21, 2020, and resulted in a convenience sample of caregivers across Canada (n = 883) of children with disability (mean age of 9.4 years old, SDage = 5.7, 58% male). We conducted latent class analysis to examine the number of latent profiles on caregiver-reported changes of 12 functioning domains, as either ‘worsening’, ‘no change’, or ‘improving’. Most participants belonged to ‘stable’ or ‘worsening’ profiles. However, we identified a small subgroup with improvements in child functioning, a pattern indicative of a ‘resilient’ profile. Using a multinomial logistic regression, we found that diagnosis type, parenting self-efficacy and support in accessing schooling were associated with membership in the Resilient or Stable profiles compared to the Worsening profile, after controlling for single-parent status and income. Taken together, our findings identified variability in responses to adversity that is dependent on the child’s diagnosis type, parenting self-efficacy, and support in accessing schooling. By identifying potentially modifiable predictors of resilience, namely parenting self-efficacy and support in accessing schooling, we signal the potential for tailored supports for different diagnoses, through interventions that enhance caregiver empowerment, access to schooling, access to health and social services, and/or mitigate disparities resulting from social disadvantage

    ENT300: Fundamentals of Entrepreneurship QAHWAH CAFE / Nur-Asikin Abdul Rahman... [et al.]

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    QAHWAH CAFE is a coffee cafe located at that allows students from the nearby university which is Kolej Laila Taib and UCTS. Other than that, our company can allows many other people instead of students such as businessman and other people that stay at that area. QAHWAIA CAFE also serves different service such as type of coffee that will serve compare to the other coffee shop. Besides that, we are providing meeting room and discussion room that will give students or businessman some comfortable places to make any discussion among them. Other than that, people who will across from the city to the college or to the nearby village can decide to layover to our cafe
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