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Experiences of Caregivers of Children with Autism During the COVID-19 Pandemic: Mental Health and Resilient Coping

Wed, April 7, 1:10 to 2:40pm EDT (1:10 to 2:40pm EDT), Virtual

Abstract

Background. Compared to children without autism, caregivers of children with autism experience significant stress, a higher incidence of depression and anxiety, and diminished overall well-being (Li et al., 2018). The impact of difficulties and disruptions associated with COVID-19 may present additional challenges for caregivers. Due to physical distancing restrictions, many caregivers have adopted multiple roles within the household (e.g., parent, educator). In addition, disruptions in routines and services (e.g., therapy) may lead to an increased frequency and severity of challenging behaviours (Eshraghi et al., 2020). Taken together, these factors have the potential to contribute to higher levels of caregiver stress (Griffith, 2020). Furthermore, living through a pandemic has been associated with feelings of ambiguity, uncertainty, and loss of control, all of which may further contribute to stress and distress (Shanahan et al., 2020). To date, the experiences of caregivers of autistic children has yet to be systematically investigated. Thus, the purpose of the present project was to 1) better understand the impact of COVID-19 on caregiver well-being (i.e., perceived stress, anxiety and distress), and 2) investigate the link between caregiver resilient coping and well-being.

Method. 625 Canadian caregivers of autistic individuals (59% female, 89% married/common law, 94% with one autistic child in the household) participated in this national study. Caregivers completed an online questionnaire between June and July 2020 that included demographic information, disruptions and difficulties due to COVID-19, perceived stress (PSS-10; Lee, 2012), anxiety (STAI-6, Marteau & Bekker, 1992), family distress/crisis (BFDS, Weiss & Lunsky, 2011), and resilient coping (BRCS; Sinclair & Wallston, 2004).

Results. Majority of caregivers (98%) reported experiencing some degree of disruption and difficulty as a result of COVID-19, as well as moderate levels of stress (85%) and high anxiety (68%). When asked about their family’s current level of distress, 14% of the sample reported the highest levels of impairment (i.e., approaching or in crisis) and 30% indicated moderate levels of impairment (i.e., managing with significant effort). Just under half of the respondents indicated low levels of resilient coping (49%). As expected, when compared to the medium and high resilient coping groups, caregivers in the low resilient coping group had higher levels of perceived stress, anxiety, and family distress prior to COVID-19. Bivariate correlations between stress, anxiety, disruption and difficulties as a result of COVID-19, and other demographic factors (e.g., child age, autism symptom severity) were also conducted.

Conclusions. Stress and mental health issues are highly prevalent in both individuals with autism and their caregivers. These issues may be exacerbated as families navigate the drastic changes in daily life and the unprecedented uncertainty of ‘what happens next’. Caregiver resilience, or the tendency to cope with stress in an adaptive manner, may play a role in the association between stress and caregiver mental health, and represents one of many important factors to consider in supporting these families. Future research is needed to better understand mental health in caregivers and families of autistic individuals as a result of the COVID-19 pandemic.

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