Impact of the COVID‐19 pandemic on the well‐being of children with neurodevelopmental disabilities and their parents

Abstract

Aims To examine the impact of COVID‐19 pandemic on child mental health and socio‐emotional and physical well‐being (including sleep, diet, exercise, use of electronic media; care giver perceptions of symptoms of child neurodevelopmental disability [NDD] and comorbidities), and care giver mental health and well‐being, social support and service use. Methods An online cross‐sectional self‐report survey was distributed via disability service providers and support groups. Care givers of children aged 2–17 years with a NDD were invited to respond to questions on child symptom severity and well‐being, parent well‐being and service access and satisfaction. Results Overall, 302 care givers (94.7% female) completed the survey. Average child age was 9.7 years and 66.9% were male. Worsening of any child NDD or comorbid mental health symptom was reported by 64.5% of respondents and 76.9% reported child health and well‐being was impacted by COVID‐19. Children were viewing more television and digital media (81.6%), exercising less (68.0%), experiencing reduced sleep quality (43.6%) and had a poorer diet (32.4%). Almost one fifth (18.8%) of families reported an increase in the dosage of medication administered to their child. Parents reported COVID‐19 had impacted their own well‐being (76.1%). Over half of respondents were not satisfied with services received during COVID‐19 (54.8%) and just 30% reported that telehealth works well for their child. Conclusion Targeted interventions are required to address worsening child neurodevelopmental disability, mental health symptoms and poor diet, sleep and exercise patterns. Improved access to telehealth services is indicated, as is further research on barriers and enablers of effective telehealth services.

The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: a scoping review

“…This review highlights the psychological and social consequences of the pandemic for people with intellectual disability who have stopped participating in their communities and have had their routines interrupted during lockdown/restrictions for a prolonged period [ 59 , 60 , 61 ] and access to education, health, vocation and mental health service disrupted [ 50 , 62 ]. In addition, many have found it difficult to understand COVID-19 and self-regulate their behaviour, creating a risk of behaviours that challenge which negatively affect the emotional well-being and quality-of-life of the person [ 63 , 64 ].…”

Effects of COVID-19 Lockdown on the Emotional and Behavioral Profiles of Preschool Italian Children with and without Familial Risk for Neurodevelopmental Disorders

“…Families have been asked to take care of online special education and therapies, which have further increased parents' load and psychological distress, with negative effects on children [20,21]. All these factors together put children at greater risk of relapse or worsening of mental health issues [28][29][30][31]. According to a cross-sectional U.K. study, during the COVID-19 emergency children with NDD (aged 4-15 years) had worse emotional symptoms compared to a similar pre-COVID-19 mental health cohort and a higher prevalence of emotional symptoms and conduct problems compared to neurotypical controls [32].…”

Addressing Pediatric Mental Health Using Telehealth During Coronavirus Disease-2019 and Beyond: A Narrative Review

“…Multiple studies addressed specific pediatric populations including those diagnosed with eating disorders, 14,15,16,17,18 ADHD, 19 autism, 19,20,21,22,23 other severe mental health concerns, 24,25,26,27,28,29,30,31,32,33,34 and chronic medical conditions including epilepsy. 35,36 Among individuals with eating disorders, worsening symptoms (e.g., increased distress, binge eating) were reported, signaling the need for additional and/or sustained psychological care.…”

“…22 However, other studies of children with autism reported several challenges (e.g., decreased follow up, potential worsening of symptoms) during telehealth. 20,21 Other investigations of youth with complex disabilities reported increased mental health concerns among children and caregivers, 25 as well as mixed to low satisfaction with virtual care (e.g., decreased access to care, perceived as a poor fit for their child). 25,26 More than a quarter of caregivers reported inadequate support from those who addressed mental health challenges (e.g., in schools or healthcare settings).…”

“…20,21 Other investigations of youth with complex disabilities reported increased mental health concerns among children and caregivers, 25 as well as mixed to low satisfaction with virtual care (e.g., decreased access to care, perceived as a poor fit for their child). 25,26 More than a quarter of caregivers reported inadequate support from those who addressed mental health challenges (e.g., in schools or healthcare settings). 28 Parents of children with epilepsy similarly reported limited or inadequate access to resources for their children via telehealth.…”