Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study

Friesen, Kelsey; Weiss, Jonathan A.; Howe, Stephanie J.; Kerns, Connor M.; McMorris, Carly A.

doi:10.1007/s10803-021-05177-4

Cited by 34 publications

(45 citation statements)

References 57 publications

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“…While families are engaging internal and external resources to cope with the abrupt changes and disruption in their lives as a result of the pandemic, there is also a reduction in existing resources, impacting the ability to balance the new stressors. Reported family outcomes have been variable, with some families coping and have experienced positives during the pandemic, while others have experienced crisis (Friesen et al, n.d. submitted). Knowledge users confirmed themes derived from the literature that describe the importance of a family's belief system and how they make meaning of adversity on building resilience.…”

Section: Discussionmentioning

confidence: 99%

The impact of COVID‐19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review

et al. 2021

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Caregivers and families of autistic people have experienced stress and increase in demands due to the COVID-19 pandemic that may have long-term negative consequences for both their own and their children's mental health. A scoping review was conducted to identify pandemic related demands experienced by caregivers and families of autistic children and youth. The review also consolidated information on coping strategies and parenting-related guidelines that have emerged to help parents meet these demands. Search strategies were approved by a research librarian and were conducted in peer-reviewed and gray literature databases between May 2020 and February 2021. Additional resources were solicited through author networks and social media. All articles were published between December 2019 and February 2021. Article summaries were charted, and a thematic analysis was conducted with confirmation of findings with our knowledge users. Twenty-three published articles and 14 pieces of gray literature were included in the review. The majority of articles characterized and highlighted the increase in demands on caregivers of autistic children and youth during the pandemic globally. Both quantitative and qualitative studies suggest that parents have experienced an increase in stress and mental health-related symptoms during lockdown measures. Findings suggest that families are employing coping strategies, but there no evidence-based supports were identified. The review highlighted the potential long-term impact of prolonged exposure to increasing demands on the mental health and wellbeing of caregivers and families of autistic people, and pointed to a need for the rapid development and evaluation of flexible and timely support programs. Lay SummaryCaregivers and families of autistic children and youth have faced increased demands due to pandemic-related lockdown measures. We reviewed the literature to outline sources of stress, links to their influence on caregiver mental health, and if support programs have emerged to help them. Our findings suggest a number of demands have increased caregivers' risk to mental health challenges, and their [Correction added on 30 October 2021, after first online publication: The copyright line was updated.]

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Section: Discussionmentioning

confidence: 99%

The impact of COVID‐19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review

et al. 2021

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“…These results support previous findings of a significant link between negative emotionality and an increase in mental health difficulties 9,12,15,16,18,39,40 . Resilience, on the other hand, demonstrated a protective, buffering effect, consistent with its very definition, the ability to overcome adversity without compromising its own mental and emotional stability 36,[41][42][43] .…”

Section: Discussionmentioning

confidence: 66%

The adverse impact of consecutive COVID-19 waves on mental health

Novotný

Rivas

Kunzová

et al. 2021

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Background: Several recent studies reported that Covid-19 pandemic induces significant mental distress. It remains unknown, however, whether mental distress persists or undergoes extinction in response to consecutive Covid-19 waves. We here examine mental distress prior to and across the three Covid-19 waves. Methods: We measured stress and depressive symptoms prior to and across the three Covid-19 waves in a well-established population-based sample. A total of 330 participants completed e-questionnaires prior to and during the Covid-19 waves. Friedman's repeated-measures and Wilcoxon rank sum pairwise test with Bonferroni correction were used to investigate repeated-measure differences, while the Kruskal-Wallis test was used to assess the effect of behavioral and physiological parameters on mental health. Results: We found significantly increased mental distress during each of the Covid-19 waves compared with the pre-Covid-19 period. Increased mental distress was more common in women and most pronounced during the 1st and in particular, the 3rd Covid-19 wave. The stress and depressive symptoms increased during pandemic compared with the pre-Covid-19 period by a maximum of 1.58 and 3.63 times, respectively. Negative emotions and loneliness were identified as the most significant risk factors of Covid-19-induced mental distress, while resilience was found to be protective. Conclusions: Mental distress surged during all the Covid-19 waves without showing extinction. This pattern is mechanistically reminiscent of the post-traumatic stress disorder. Our results suggest that the Covid-19 pandemic underlies development of a novel chronic mental health disorder and do not exclude possible further deterioration of mental health in case of future Covid-19 waves.

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“…The closure of schools and the requirement for home schooling was an additional stressor for families of autistic children and/or children with an intellectual disability. Findings here suggest that family adaptation to stressors may vary depending on the extent of the stressor -some children went to school some days, and some went to school every day -and formal and informal support from school for home schooling (McCubbin and Patterson, 1983;Friesen et al, 2022).…”

Section: Discussionmentioning

confidence: 92%

Home schooling during the COVID-19 pandemic in the United Kingdom: The experience of families of children with neurodevelopmental conditions

et al. 2022

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The COVID-19 outbreak, and associated school restrictions affected the learning experience of students worldwide. The current study focused on the learning experiences of United Kingdom children with neurodevelopmental conditions, including autism and/or intellectual disability. Specifically, the aim was to examine families’ experience with school support for home schooling, families’ resources, and level of satisfaction with schools among families whose children engaged with home schooling, hybrid learning, and school-based learning during the pandemic. An online survey took place in 2021, approximately 1 year since the start of the COVID-19 pandemic in the United Kingdom. Participants were recruited mostly through social media with support via several charities across the United Kingdom. Participants were 809 parents/carers of children with autism and/or intellectual disability aged 5 – 15 years. Of these, 59% were learning from home daily during home schooling, 19% spent some days in school (hybrid learning), and 22% were going to school daily during school restrictions. Parents/carers reported on the support received from schools, the resources accessed, and the resources needed but not accessed to facilitate learning. They also reported on their level of satisfaction with school support and school management of COVID-19 risks. Results indicated that learning during the COVID-19 pandemic was mostly via school-provided worksheets, in the home and hybrid learning group. Families had access to the internet/data and a laptop, computer, or tablet to facilitate learning. However, in both learning groups (i.e., home and hybrid learning) they needed but did not have access to special equipment, special software, and a printer. Importantly, 11% of families in home and hybrid learning groups reported not having access to a desk/table. Satisfaction with school support was low in the home and hybrid learning groups. Satisfaction with COVID-19 management was higher for families of children attending school daily (i.e., the school-based learning group). Future education policy decisions during public health crises should take into consideration the needs of children with neurodevelopmental conditions including autism and/or intellectual disability.

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Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study

Cited by 34 publications

References 57 publications

The impact of COVID‐19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review

The impact of COVID‐19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review

The adverse impact of consecutive COVID-19 waves on mental health

Home schooling during the COVID-19 pandemic in the United Kingdom: The experience of families of children with neurodevelopmental conditions

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