Comparing the initial impact of COVID-19 on burden and psychological distress among family caregivers of children with and without developmental disabilities.

Abstract

The current COVID-19 pandemic is presenting challenges for families (Cluver et al., 2020), which may be exacerbated for caregivers of children with developmental disabilities (DDs; Center on the Developing Child, 2020). The purpose of this study was to explore caregiver burden and psychological distress among caregivers of children with DD as compared to caregivers of typically developing children across the United States as a result of COVID-19. Between 2 weeks and 1 month following COVID-19-related school closures, a total of 460 caregivers from across the U.S. completed an online survey via Qualtrics; recruitment and initial survey completion occurred simultaneously. Of the total sample of eligible participants (N = 407), 225 were the primary caregiver of a child with autism spectrum disorder (ASD)/attention-deficit/hyperactivity disorder (ADHD) and 182 were the primary caregiver of a child without ASD/ADHD. Participants across groups indicated varying levels of exposure to COVID-19 and an impact of COVID-19 at the community and individual or family levels. However, caregivers of children with ASD/ADHD reported significantly higher levels of burden, depression, anxiety, and stress. Overall, findings are consistent with anecdotal and preliminary reports that all caregivers are experiencing COVID-19-related challenges, with caregivers of children with ASD/ADHD experiencing even greater challenges, particularly with regard to burden and psychological distress. Impact and ImplicationsAlthough all family caregivers are experiencing challenges as a result of COVID-19, caregivers of children with disabilities indicated a more significant impact on themselves and their families. Schools should consider the impact of COVID-19 on all family caregivers when planning child supports and services, but caregivers of children with ASD/ADHD will likely need additional support for both their own well-being and their child's educational goals.

Impact of COVID‐19 on the burden of care of families of people with intellectual and developmental disabilities

“…Second, this study is exclusively focused on relatives of people with intellectual and developmental disability, and their situation cannot be compared with that of other families who did not live with people with disabilities during lockdown. Studies such as that by Chafouleas and Iovino (2021) and Willner et al, (2020) note that, although many families with children without disabilities have experienced difficulties, these have been greater for those who have a child with intellectual and developmental disability (Willner et al, 2020). whether support and services will continue as they used to be so far, and about the impact of lockdown and COVID-19 on the health of the person with disability.…”

“…Thus, except for the studies by Redquest et al (2021), whose specific target are the siblings of adults, and Willner et al (2020), which includes both adult and under‐age populations, they all focus on child‐youth population. Moreover, only six studies address the particular challenges that the family members of people with more extensive support needs might have faced (Bentenuto et al, 2021; Canning & Robinson, 2021; Chafouleas & Iovino, 2021; Kim et al, 2021; Paulauskaite et al, 2021; Willner et al, 2020), and most of them, except for the paper by Willner et al (2020), that addresses diverse effects of the COVID‐19 pandemic on relatives of both adults and children, focus exclusively on underage population with behavioural problems or autism spectrum disorder, placing specific emphasis on analysing the impact of the closure of educational facilities. It is, therefore, necessary to delve into the experiences of relatives of people with intellectual and developmental disabilities, both adult and underage, during the health emergency and lockdown period, while also analysing whether those who have supported people with more extensive needs have been exposed to situations of particular vulnerability or stress.…”

“…The literature published so far coincide in noting that the combination of pre‐existing stressors associated with the needs of the family member with disability and the stressors arising from the restrictions placed to curb the pandemic has had a significant impact on the mental health and emotional wellbeing of the families and caregivers of people with disabilities (e.g., Alhuzimi, 2021; Althiabi, 2021; Asbury et al, 2021; Greenway & Eaton‐Thomas, 2020; Grumi et al, 2021; Lee et al, 2020; Masi et al, 2021; Neece et al, 2020; Rose et al, 2020; Saline, 2021). The additional stressors that affect families and are associated with the exceptional nature of the health emergency can be summarised as follows: (a) the duty of providing ongoing support for their relatives with disability, especially to meet their healthcare, social, and educational needs (e.g., Asbury et al, 2021; Cacioppo et al, 2020; Chafouleas & Iovino, 2021; Eshraghi et al, 2020; Greenway & Eaton‐Thomas, 2020; Simón et al, 2021); (b) to deal with reconciling work and care for the family member with disability (e.g., Colizzi et al, 2020; Ren et al, 2020; Rose et al, 2020), the line between specific support services' and families' responsibilities becoming blurred (Canning & Robinson, 2021); (c) social isolation (Lightfoot et al, 2021; Sienko, 2020); and (d) new family concerns brought about by the health situation, such as household economy or the long‐term effects that COVID‐19 might have on the person with disability (e.g., Asbury et al, 2021; Neece et al, 2020; Redquest et al, 2021). Likewise, uncertainty and concern regarding the evolution of the health situation and the future is a commonly mentioned issue in many of the studies published to date (Asbury et al, 2021; Cacioppo et al, 2020; Grumi et al, 2021; Neece et al, 2020; Redquest et al, 2021).…”

Supporting COVID-19 School Safety for Children With Disabilities and Medical Complexity

“…During the pandemic, caregivers of children with ASD further reported higher levels of burden, stress, anxiety, and depression compared with caregivers of typically developing children. 15 Parents of children with special needs are also less likely to be equipped to continue the child's learning remotely, further exacerbating their educational disadvantage. 16 Children with IDD are at a greater risk for mental health symptoms than their neurotypical peers.…”

Editorial Perspective: COVID‐19, ADHD management and telehealth: uncertain path

“…We are just now beginning to assess the acute impact on children, families, providers, and health care systems. Observational studies have reported worsening in ADHD (Zhang et al., 2020 ), more internalizing symptoms, as well as increases in negative health behavior such as increased screen time, less physical activity, and irregular sleep habits (Chafouleas & Iovino, 2021 ; Sibley et al., 2021 ). Not surprisingly, risk factors such as less sleep and more screen time are correlated with depressive symptoms (Chafouleas & Iovino, 2021 , p. 4; Swansburg, 2021, p. 5).…”