Anxiety, concerns and COVID-19: Cross-country perspectives from families and individuals with neurodevelopmental conditions

BACKGROUND: The COVID-19 pandemic had a major impact on the mental health and well-being of children with neurodevelopmental conditions (NDCs) and of their families worldwide. However, there is insufficient evidence to understand how different factors (e.g., individual, family, country, children) have impacted on anxiety levels of families and their children with NDCs developed over time. METHODS: We used data from a global survey assessing the experience of 8043 families and their children with NDCs (mean of age (m) = 13.18 years, 37% female) and their typically developing siblings (m = 12.9 years, 45% female) in combination with data from the European Centre for Disease Prevention and Control, the University of Oxford, and the Central Intelligence Agency (CIA) World Factbook, to create a multilevel data set. Using stepwise multilevel modelling, we generated child-, family- and country-related factors that may have contributed to the anxiety levels of children with NDCs, their siblings if they had any, and their parents. All data were reported by parents. RESULTS: Our results suggest that parental anxiety was best explained by family-related factors such as concerns about COVID-19 and illness. Children’s anxiety was best explained by child-related factors such as children’s concerns about loss of routine, family conflict, and safety in general, as well as concerns about COVID-19. In addition, anxiety levels were linked to the presence of pre-existing anxiety conditions for both children with NDCs and their parents. CONCLUSIONS: The present study shows that across the globe there was a raise in anxiety levels for both parents and their children with NDCs because of COVID-19 and that country-level factors had little or no impact on explaining differences in this increase, once family and child factors were considered. Our findings also highlight that certain groups of children with NDCs were at higher risk for anxiety than others and had specific concerns. Together, these results show that anxiety of families and their children with NDCs during the COVID-19 pandemic were predicted by very specific concerns and worries which inform the development of future toolkits and policy. Future studies should investigate how country factors can play a protective role during future crises

VÝSTAVBA CENTRA PRO WILLIAMSŮV SYNDROM V HOCHSCHULE ZITTAU/GÖRLITZ – SOUČASNÝ VÝZKUM, VÝUKA A TŘETÍ MISE

Williamsův syndrom (WS) je vzácná porucha nervové soustavy způsobená ztrátou genu na chromozomu 7, která se vyskytuje u 1 ze 7500 živě narozených dětí. Fenotyp WS je typicky spojen s mírným mentálním postižením, srdečními problémy, hypersociálním chováním, úzkostmi a potřebou péče po celou délku života. Současný výzkum se zaměřuje hlavně na klinické charakteristiky, čímž poskytuje důležité výsledky pro zdravotnický management. Rodiče, terapeuti a profesionální pečovatelé však mohou najít velmi málo použitelných návodů pro výzvy každodenního života. Cílem autorů je položit si výzkumné otázky a pomoci překlenout tyto mezery v dlouhodobém horizontu. Proto se zabývají budováním kompetenčního centra pro WS na Univerzitě aplikovaných věd Zittau / Görlitz (HSZG). Tento článek popisuje výchozí bod a hlavní myšlenku, stejně jako dokončené, probíhající a plánované vědecké a podpůrné aktivity

Budowa centrum Zespołu Williamsa w Hochschule Zittau/Görlitz – obecne badania, nauczanie i Trzecia Misja

Williamsův syndrom (WS) je vzácná porucha nervové soustavy způsobená ztrátou genu na chromozomu 7, která se vyskytuje u 1 ze 7500 živě narozených dětí. Fenotyp WS je typicky spojen s mírným mentálním postižením, srdečními problémy, hypersociálním chováním, úzkostmi a potřebou péče po celou délku života. Současný výzkum se zaměřuje hlavně na klinické charakteristiky, čímž poskytuje důležité výsledky pro zdravotnický management. Rodiče, terapeuti a profesionální pečovatelé však mohou najít velmi málo použitelných návodů pro výzvy každodenního života. Cílem autorů je položit si výzkumné otázky a pomoci překlenout tyto mezery v dlouhodobém horizontu. Proto se zabývají budováním kompetenčního centra pro WS na Univerzitě aplikovaných věd Zittau / Görlitz (HSZG). Tento článek popisuje výchozí bod a hlavní myšlenku, stejně jako dokončené, probíhající a plánované vědecké a podpůrné aktivity.Beim Williams-Syndrom (WS) handelt es sich um eine seltene nervliche Entwicklungsstörung, welche auf einem Genverlust am Chromosom 7 beruht. Diese Störung wird bei einer von 7500 Geburten diagnostiziert. Der WS-Phänotyp geht typischerweise einher mit einer mäßigen geistigen Behinderung, Herzproblemen, einem hypersozialen Verhalten, Angstzuständen und dem Bedürfnis nach lebenslanger Unterstützung. Die gegenwärtige Forschung ist hauptsächlich auf die klinischen Charakteristiken gerichtet und bringt so wichtige Folgerungen für das medizinische Management. Eltern, Therapeuten und professionelle Betreuer vermögen freilich nur sehr wenige brauchbare Folgerungen für die Herausforderungen des Alltagslebens zu finden. Die Autoren zielen darauf ab, Forschungsfragen zu stellen und langfristig diese Lücke zu überbrücken. Daher sind sie damit befasst, an der Hochschule Zittau/Görlitz (HSZG) ein Kompetenzzentrum für das WS einzurichten. Dieser Artikel skizziert den Anfangspunkt und den Hauptgedanken sowie weiterführende und geplante wissenschaftliche unterstützende Aktivitäten.Williams Syndrome (WS) is a rare neurodevelopmental disorder based on a gene loss on chromosome 7, which occurs in 1 of 7,500 live births. The WS phenotype is typically associated with moderate mental disability, cardiac problems, hyper social behavior, anxieties, and a need for lifelong support. Current research focuses mainly on clinical characteristics, thus providing important implications for medical management. Parents, therapists and professional caregivers are able to find very few usable implications for everyday-life challenges though. The authors aim to raise research questions and help to bridge this gap in the long term. Therefore they are engaged in building a competence center for WS at the University of Applied Sciences Zittau/Görlitz (HSZG). This article outlines the starting point and main idea, as well as completed, ongoing and planned scientific and supportive activities.Zespół Williamsa (ZW) to rzadkie zaburzenie układu nerwowego spowodowane mutacją w obrębie chromosomu 7, występujące u 1 na 7500 żywych urodzonych dzieci. Fenotyp ZW jest typowo związany z łagodnym upośledzeniem umysłowym, wadami serca, zaburzeniami zachowania, lękami i konieczną opieką przez całe życie. Obecne badania skupiają się przede wszystkich na cechach klinicznych, dając ważne informacje dla zarządzania medycznego. Jednak rodzice, terapeuci i profesjonalni opiekunowie mogą znaleźć niewiele informacji, jak podołać wyzwaniom życia codziennego. Celem autorów jest sformułowanie pytań badawczych i chęć zagospodarowania tych braków w perspektywie długoterminowej. Dlatego zajmują się oni stworzeniem ośrodka kompetencyjnego dla ZW na Uniwersytecie Nauk Stosowanych Zittau/ Görlitz (HSZG). W niniejszym artykule opisano punkty wyjścia oraz główną ideę a także ukończone, trwające i planowane działania naukowe i wspomagające

Anxiety, concerns and COVID-19: Cross-country perspectives from families and individuals with neurodevelopmental conditions

BackgroundThe COVID-19 pandemic had a major impact on the mental health and well-being of children with neurodevelopmental conditions (NDCs) and of their families worldwide. However, there is insufficient evidence to understand how different factors (e.g., individual, family, country, children) have impacted on anxiety levels of families and their children with NDCs developed over time.MethodsWe used data from a global survey assessing the experience of 8043 families and their children with NDCs (mean of age (m) = 13.18 years, 37% female) and their typically developing siblings (m = 12.9 years, 45% female) in combination with data from the European Centre for Disease Prevention and Control, the University of Oxford, and the Central Intelligence Agency (CIA) World Factbook, to create a multilevel data set. Using stepwise multilevel modelling, we generated child-, family- and country-related factors that may have contributed to the anxiety levels of children with NDCs, their siblings if they had any, and their parents. All data were reported by parents.ResultsOur results suggest that parental anxiety was best explained by family-related factors such as concerns about COVID-19 and illness. Children’s anxiety was best explained by child-related factors such as children’s concerns about loss of routine, family conflict, and safety in general, as well as concerns about COVID-19. In addition, anxiety levels were linked to the presence of pre-existing anxiety conditions for both children with NDCs and their parents.ConclusionsThe present study shows that across the globe there was a raise in anxiety levels for both parents and their children with NDCs because of COVID-19 and that country-level factors had little or no impact on explaining differences in this increase, once family and child factors were considered. Our findings also highlight that certain groups of children with NDCs were at higher risk for anxiety than others and had specific concerns. Together, these results show that anxiety of families and their children with NDCs during the COVID-19 pandemic were predicted by very specific concerns and worries which inform the development of future toolkits and policy. Future studies should investigate how country factors can play a protective role during future crises

Introducing the COVID-19 crisis Special Education Needs Coping Survey

Individuals with special education needs have been particularly affected by the COVID-19 pandemic as they have been shown to be at high risk of losing medical and institutional support at a time when people are being asked to stay isolated, suffering increased anxiety and depression as a consequence. Their families have often found themselves under tremendous pressure to provide support, engendering financial hardship, and physical and emotional strains. In such times, it is vital that international collaborations assess the impact on the individuals and their families, affording the opportunity to make national and international comparisons of how people have coped and what needs to be done to optimize the measures taken by families, associations and governments. This paper introduces one such collaboration