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

Emotional competences of children with Prader-Willi syndrome : developmental, integrative and therapeutic approach

Actuellement, nous disposons de connaissances lacunaires sur le fonctionnement émotionnel des personnes présentant un syndrome de Prader-Willi (SPW) et encore plus sur le développement pendant l’enfance. La littérature décrit une symptomatologie telle que des crises de colère, une labilité émotionnelle, des comportements impulsifs, anxieux et des difficultés d’adaptation sociale, suggérant des troubles des compétences émotionnelles (i.e. capacité à utiliser ses émotions au quotidien) qui nécessiteraient d’être pris en charge. L’objectif de ce projet de recherche est double : augmenter les connaissances sur le développement émotionnel des enfants avec SPW et tester auprès d’eux l’effet d’un programme d’intervention thérapeutique centré sur les compétences émotionnelles. La première étude vise à évaluer le niveau des compétences émotionnelles (expression, reconnaissance, compréhension et régulation des émotions) auprès de 25 enfants avec SPW âgés de 5 à 10 ans. Leur niveau est comparé à celui d’enfants au développement typique apparié d’une part sur l’âge chronologique, et d’autre part sur l’âge développemental. Les résultats montrent que les enfants avec SPW présentent un retard de développement important pour l’ensemble des compétences émotionnelles qui n’est pas seulement imputable au déficit cognitif. La seconde étude présente un nouveau programme d’intervention thérapeutique (programme EMOT) spécifiquement élaboré pour aider les enfants avec SPW à améliorer leurs compétences émotionnelles. Fondé sur une approche intégrative, le programme est proposé par un des thérapeutes habituels des enfants durant 6 semaines. L’effet du programme est mesuré en analysant l’évolution des compétences émotionnelles des enfants entre une session d’évaluation pré-intervention et deux sessions post-interventions (immédiat et différé). Les résultats montrent que le programme EMOT a permis aux enfants qui en ont bénéficié de s’améliorer sur la majorité des compétences émotionnelles, et réduire ainsi leur retard de développement. On observe que l’effet bénéfique s’amenuise à mesure que la tâche se complexifie et qu’elle nécessite des aptitudes cognitives, perceptives et langagières plus poussées. Ces travaux apportent un éclairage nouveau sur le fonctionnement et le développement émotionnels dans le cadre du SPW et montrent la pertinence d’une prise en charge précoce.Currently, we have very limited knowledge about the emotional functioning of people with Prader-Willi Syndrome (PWS) and the development during childhood. The literature describes symptoms such as temper tantrums, emotional lability, impulsive and anxious behaviours and social adjustment difficulties, suggesting disturbances of emotional skills (i.e. the ability to use emotions daily) that would need to be taken care of. The purpose of this research project is twofold : to increase knowledge about children's emotional development with PWS and to test with them the effect of a therapeutic intervention program centred on emotional skills. The first study aims at assessing the level of emotional skills (i.e. expression, recognition, comprehension and regulation of emotions) for 25 children with PWS from 5 to 10 years old. Their level is compared to that of children with a typical development matched, on the one hand, on the chronological age, and, on the other hand, on the developmental age. The results show that children with PWS present a significant developmental delay in all emotional skills which is not only due to intellectual retardation. The second study presents a new therapeutic intervention program (EMOT program) specifically designed to help children with PWS improve their emotional skills. Based on an integrative approach, the program is offered by one of the usual children's therapists for 6 weeks. The effect of the program is measured by analysing the evolution of children's emotional skills between a pre-intervention assessment session and two post-intervention sessions (immediate and delayed). The results show that the EMOT program allowed children who benefited from it to improve the majority of their emotional skills, and thus reduce their developmental delay. We find that the beneficial effect decreases as the task becomes more complex and requires more cognitive, perceptual and linguistic skills. This work sheds new light on the emotional functioning and development of the PWS and shows the relevance of an early intervention

Compétences émotionnelles des enfants avec syndrome de Prader-Willi : approche développementale, intégrative et thérapeutique

Currently, we have very limited knowledge about the emotional functioning of people with Prader-Willi Syndrome (PWS) and the development during childhood. The literature describes symptoms such as temper tantrums, emotional lability, impulsive and anxious behaviours and social adjustment difficulties, suggesting disturbances of emotional skills (i.e. the ability to use emotions daily) that would need to be taken care of. The purpose of this research project is twofold : to increase knowledge about children's emotional development with PWS and to test with them the effect of a therapeutic intervention program centred on emotional skills. The first study aims at assessing the level of emotional skills (i.e. expression, recognition, comprehension and regulation of emotions) for 25 children with PWS from 5 to 10 years old. Their level is compared to that of children with a typical development matched, on the one hand, on the chronological age, and, on the other hand, on the developmental age. The results show that children with PWS present a significant developmental delay in all emotional skills which is not only due to intellectual retardation. The second study presents a new therapeutic intervention program (EMOT program) specifically designed to help children with PWS improve their emotional skills. Based on an integrative approach, the program is offered by one of the usual children's therapists for 6 weeks. The effect of the program is measured by analysing the evolution of children's emotional skills between a pre-intervention assessment session and two post-intervention sessions (immediate and delayed). The results show that the EMOT program allowed children who benefited from it to improve the majority of their emotional skills, and thus reduce their developmental delay. We find that the beneficial effect decreases as the task becomes more complex and requires more cognitive, perceptual and linguistic skills. This work sheds new light on the emotional functioning and development of the PWS and shows the relevance of an early intervention.Actuellement, nous disposons de connaissances lacunaires sur le fonctionnement émotionnel des personnes présentant un syndrome de Prader-Willi (SPW) et encore plus sur le développement pendant l’enfance. La littérature décrit une symptomatologie telle que des crises de colère, une labilité émotionnelle, des comportements impulsifs, anxieux et des difficultés d’adaptation sociale, suggérant des troubles des compétences émotionnelles (i.e. capacité à utiliser ses émotions au quotidien) qui nécessiteraient d’être pris en charge. L’objectif de ce projet de recherche est double : augmenter les connaissances sur le développement émotionnel des enfants avec SPW et tester auprès d’eux l’effet d’un programme d’intervention thérapeutique centré sur les compétences émotionnelles. La première étude vise à évaluer le niveau des compétences émotionnelles (expression, reconnaissance, compréhension et régulation des émotions) auprès de 25 enfants avec SPW âgés de 5 à 10 ans. Leur niveau est comparé à celui d’enfants au développement typique apparié d’une part sur l’âge chronologique, et d’autre part sur l’âge développemental. Les résultats montrent que les enfants avec SPW présentent un retard de développement important pour l’ensemble des compétences émotionnelles qui n’est pas seulement imputable au déficit cognitif. La seconde étude présente un nouveau programme d’intervention thérapeutique (programme EMOT) spécifiquement élaboré pour aider les enfants avec SPW à améliorer leurs compétences émotionnelles. Fondé sur une approche intégrative, le programme est proposé par un des thérapeutes habituels des enfants durant 6 semaines. L’effet du programme est mesuré en analysant l’évolution des compétences émotionnelles des enfants entre une session d’évaluation pré-intervention et deux sessions post-interventions (immédiat et différé). Les résultats montrent que le programme EMOT a permis aux enfants qui en ont bénéficié de s’améliorer sur la majorité des compétences émotionnelles, et réduire ainsi leur retard de développement. On observe que l’effet bénéfique s’amenuise à mesure que la tâche se complexifie et qu’elle nécessite des aptitudes cognitives, perceptives et langagières plus poussées. Ces travaux apportent un éclairage nouveau sur le fonctionnement et le développement émotionnels dans le cadre du SPW et montrent la pertinence d’une prise en charge précoce

The effect of laughter expression modulation on emotional experience in 4 to 10 year-old children

International audienc

Language and emotional abilities in children with Williams syndrome and children with autism spectrum disorder: similarities and differences

International audienceWilliams syndrome (WS) is a genetic disease with a relatively homogeneous profile: relatively well-preserved language, impaired cognitive activities, and hypersociability. Autism spectrum disorder (ASD) refers to a group of individuals with impairments in aspects of communication and a particular pattern of language acquisition. Although ASD and WS are polar opposites when it comes to communication abilities (language and emotion) and social behavior, comparisons between WS and ASD are still rare in the literature. ASD and WS are both associated with general language and developmental delays. Difficulties in social interaction and general pragmatic difficulties are reported in both ASD and WS, but are more pervasive in ASD. Regarding facial emotion recognition, the two syndromes differ markedly in sensitivity to human faces. Despite the heterogeneity of these two groups, only a few studies with children have paid sufficient attention to participant recruitment and study design. A number of aspects need to be taken into account (eg, small age range, homogeneity of the subgroups, matching with typically developing children) if scientific results are to inform the design of intervention programs for children with neurodevelopmental disorders such as ASD and WS

Apprendre les émotions aux enfants porteurs d’un syndrome de Prader-Willi : le programme EMOT

International audienc

Equivocal expression of emotions in children with Prader-Willi syndrome: what are the consequences for emotional abilities and social adjustment?

International audienc

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