Anxiety and Emotion Regulation in Young People with Williams Syndrome and Down Syndrome During the COVID-19 Outbreak: A Global Study (preprint)

Young people with neurodevelopmental conditions (NDCs) have been reported to experience increased levels of anxiety during the COVID-19 pandemic. In our study, we document how young people with Down Syndrome (DS; N=557) and Williams syndrome (WS, N=247) experienced the first wave of the COVID-19 pandemic across the world. Using multilevel linear mixed regressions, we studied (a) parental reported anxiety of young people with DS and WS, (b) these young people’s specific concerns, and (c) their use and efficacy of emotion regulation (ER) strategies. Predictors of anxiety, such as the age of the individual with NDC, type of condition, and time, were investigated. Young people with WS experienced higher levels of anxiety compared to those with DS and the older the people with NDC were, the more anxiety they experienced. In terms of concerns, group effects indicated that young people with WS scored higher for most of the concerns. Higher financial concerns were found in males compared to females, whereas most of the concerns increased with age except for concerns about loss of institutional support and family conflict. Finally, significant group effects were found and indicated a more frequent use of a variety of adaptive and maladaptive ER strategies in young people with WS. We only identified group differences in ER efficacy for two strategies: isolation/withdrawal was more efficient for young people with DS, while repetitive behaviours were more efficient for young people with WS. Our results indicate that young people with WS are likely to exhibit higher levels of anxiety, but also of concerns depending on their age and gender. Similarly, young people with WS use a variety of ER strategies more frequently but these strategies are not necessarily more efficient for them. We discuss the impact of these findings in relation to anxiety identification and support across young people with NDCs.

The impact of the pandemic on children under 11 with Down Syndrome

AimsThe UK has faced 3 major lockdowns since March 2020 due to the pandemic, affecting access to education, healthcare provision and social activities. Children with Down Syndrome are more likely to have chronic health conditions and require developmental support, therefore are more likely to be impacted by healthcare delays and the move to remote services. Childhood is a crucial time for social, physical, and emotional development so 2 years of disrupted support will have had life-long consequences. This survey aimed to determine the impact of the pandemic on children under 11 with DS in the UK.MethodsThe survey was split into 6 categories: Demographics, Education, Healthcare provision, Physical health, Mental health, and Behaviour. Parents/carers gave feedback during the survey development. The questions were inputted into REDCap survey software on a secure server and all data was anonymously submitted. The survey was circulated using a digital snowballing technique through social media and email. Charities and support groups were contacted and asked to share the survey. Valid response percentages for each item were calculated and presented below.ResultsThere were 241 responses from caregivers across the UK between 25thOctober 2021 and 14th February 2022 (England 79.5%;Scotland 18.5%;Wales 2.9%;NI 2.1%). The children were primarily White (n=215) and male (Male: n=124;Female: n=117).Parents believed that remote learning had a negative impact on children with DS. 51% (n=53) of parents of children who continued school online felt that their child did not progress with their learning and 83.8% (n=88) felt they were missing out on key learning activities. 84.3% (n=129) believed that missing out on after-school activities had a moderate-large impact on their child and 59.8% (n=143) of parents believe that the lockdown has caused their child’s social skills to deteriorate.Healthcare/therapy provision was a large concern;89.8% (n=211) had appointments delayed and/or cancelled, while 43.6% (n=17) of those awaiting surgeries had them cancelled due to COVID and another 43.6% (n=17) were delayed. 57.1% (n=20) of those parents were worried about their child’s health as a result and 34.2% (n=78) of parents saw a direct increase in health issues.Parents saw a change in their child’s mental health and behaviour. 68.7% (n=161) of parents believe that their child’s emotional wellbeing had deteriorated, with the number of children presenting with signs of aggression often/almost always increasing from 4.3% (n=10) to 20.9% (n=48) and those crying often/almost always increasing from 2.5% (n=6) to 19.9% (n=47). As such, 77.8% (n=159) said the pandemic made the family dynamic more strained/stressful.ConclusionDespite parents reporting that 58.2% (n=139) of their children were ‘seemingly unaware’ of the pandemic, it has nonetheless had a clear negative impact on their health, development and quality of life. Conducting qualitative interviews with families would provide a deeper insight into the lived experiences of the children during the pandemic and help to develop a tailored and targeted approach to support parents/carers and their children moving forward.

Anxiety and Worries of Individuals with Down Syndrome During the COVID-19 Pandemic: A Comparative Study in the UK (preprint)

The present study explored the effects of the pandemic on individuals with Down Syndrome (n= 67) compared to other SEND diagnoses (n= 48) and their Typically Developing Siblings (n= 56). In total, 115 caregivers reported on their own anxiety and worries as well as of their children. Anxiety levels for individuals with Down syndrome appeared to be lower compared to other SEND populations and to Typically Developing Siblings. In terms of worries, individuals with Down Syndrome worried more about social-related worries but worried less about family- related aspects compared to the other groups. In sum, individuals with Down Syndrome might show less anxiety but still worried more about specific aspects related to the impact of COVID-19 pandemic on their lives.

Introducing the COVID-19 crisis Special Education Needs Coping Survey (preprint)

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.

The impact of COVID-19 on anxiety and wellbeing for families of individuals with Special Education Needs and Disabilities in the UK (preprint)

COVID-19 has affected people across the world. However, it has been suggested that individuals with Special Education Needs and Disabilities (SEND) and their families might have been particularly impacted by the first national lockdown in the UK. In contrast to previous studies, the current study examined wellbeing and anxiety at different time points and included a control group matched for family situation. Parents of 402 individuals with SEND reported on their own anxiety and wellbeing as well as that of their son/daughter at three time points (before COVID-19, when COVID-19 pandemic started, and during the national lockdown). In addition, data from 186 typically developing (TD) siblings was obtained. Repeated measures ANOVAs and regression analyses showed that, although both individuals with SEND and their TD siblings showed increased anxiety across the three time points, levels of anxiety were not predicted by age, gender or health. Instead, levels of anxiety in the SEND group, but not the TD siblings, were predicted by awareness about COVID-19, diagnosis of an existing anxiety disorder as well as parental anxiety. In addition, whilst TD individuals were reported to increasingly worry about social related issues as well as family related issues, those with SEND were reported to worry about issues related to school closures. These findings show that COVID-19 impacts the wellbeing of those with SEND differently to that of their TD siblings and that school closures have a particular effect on this group. Further implications for policy impact and interventions are discussed.