Anxiety and concerns during the COVID-19 pandemic of families with a child with a neurodevelopmental condition – a multi-level international study led by Prof. Dr Andrea Samson and Prof. Dr Jo Van Herwegen.

The peer-reviewed study, published in the Journal of Global Health, analysed data from more than 6600 families with a child with a neurodevelopmental condition (NDC) - autism, attention-deficit/hyperactivity disorder, developmental language disorder, Down syndrome, Williams syndrome, and intellectual disability - from 70 countries.

Parents were invited to fill in an online questionnaire about their family situation, anxiety levels and concerns during the first wave of the COVID-19 pandemic.

In how parent and child anxiety developed over time and aimed to quantify to what extent families and their children with NDCs were impacted by the COVID-19 pandemic

The authors were interested in how parent and child anxiety developed over time and aimed to quantify to what extent families and their children with NDCs were impacted by the COVID-19 pandemic and how their anxiety levels were mitigated or aggravated by coun­try, family, and individual child factors such as their health or other individual differences or concerns using multilevel modelling. Since the anxiety levels were likely affected by national demographic charac­teristics or government policy (country level: eg, number of deaths, fiscal measures, overall obesity levels, emergency health care investment), family context (family level: eg, concerns about family safety, family conflict) and child context factors (child level: eg, concerns about loss of routine, becoming ill themselves), the authors integrated data concerning how the pandemic evolved, government responses, and structural descrip­tors of countries from the European Centre for Disease Prevention and Control, the University of Ox­ford, and the CIA World Factbook to a multilevel data set.

Prof. Dr. Andrea Samson (UniDistance Suisse & University of Fribourg, Switzerland) who co-led the study with Prof. Dr. Jo Van Herwegen (UCL’s Faculty of Education and Society, London, UK) said: «At the beginning of the pandemic we were worried about the many families with a child with NDC that were cut from their usual services and institutions such as specialized schools, day care services, therapists, clinicians or medical care. Since many of our research projects came to a sudden halt due to the pandemic, we dedicated our time to the creation of a survey in the first weeks of the pandemic, as well as building a network of more than 50 collaborators across the globe to help translate the questionnaire as well as to recruit families in their respective countries.»

The results

The results show that at the beginning of the pandemic, anxiety increased significantly for parents and their children with an NDC as well as their typically developing sibling (if they had any), as reported by the parents.

While anxiety decreased again for children to almost pre-pandemic levels, this was not the case for parents who seemed to be experiencing chronic increased stress

commented Prof. Dr. Andrea Samson.

In the final multilevel analysis model, parental concerns related to their and their children’s health and their children’s lack of opportunity to get physically close to others due to anti-transmission measures (e.g. so­cial distancing) were the best predictors of parental anxiety. This means that health-related worries and concerns about limited opportunities for social interactions increased parental anxiety. The lack of social contact seems to be one of the main worries for families with a child with an NDC, likely related to concerns about their social development. Child anxiety was best explained by the «child factors» – such as their worries about COVID-19 or family conflict. In addition, the lack of routine was a significant contributor to all children’s anxiety.

Interestingly, while parental anxiety was not impacted by the type of NDC of their child, child anxiety was affected by the type of NDC and NDC-specific concerns. For example, children with Williams syndrome had the highest levels of anxiety, and the anxiety of children with autism, ADHD and Williams syndrome was explained by concerns about the loss of routine.

This is in line with the elevated need of children with NDCs for consistency and routine in their daily lives

commented Jo Van Herwegen.

This finding indicates that the sudden changes to the daily structures of children with NDCs during the COVID-19 pandemic, due to the closure of schools and institutions, the discontinuation of mental health care services, as well as the necessary familial reorganization, greatly impacted these children and their families, inde­pendently of the country they lived in.

None of the government-level policy measures were significant factors predicting parental or child anxiety in the final models

Surprisingly, none of the government-level policy measures were significant factors predicting parental or child anxiety in the final models, which indicates that country-related contexts such as the public health system did not have a direct impact on anxiety.

First author Vassilis Sideropoulos (UCL’s Faculty of Education and Society, London, UK) commented «this finding presents a challenge in terms of understanding the implications of COVID-19, as no previous research has examined its effects on families and individuals with neurodevelopmental conditions through a global scale using cross-country models. The absence of a clear explanation for this finding highlights the complexity of the pandemic's impact on anxiety and the need for further exploration and investigation in this field».

Prof. Dr. Jo Van Herwegen underlines the importance of the study’s findings for future policy recommendations and for developing interventions and toolkits to help parents (who were more affected by anxiety) and children cope with future crises. For instance, toolkits that the public health system could provide to support families with children with NDCs through events such as a pandemic should emphasize the importance of re-establishing a new family routine, or to help children as well as their parents to regulate their anxiety.

The authors also highlight limitations to the findings including the fact that data were collected only once and pre-pandemic and at the start of the pandemic anxiety levels were assessed retrospectively. Also, only parents were asked to report their children's anxiety levels instead of asking individuals with NDCs themselves. Still, the data from parents provides important insights into the needs of families with a child with an NDC across the globe at the start of the pandemic and the established network will provide opportunities for future research.

Learn more about the international study and read the published paper.

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