The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK

Gillespie‐Smith, Karri; McConachie, Doug; Ballantyne, Carrie; Auyeung, Bonnie; Goodall, Karen

doi:10.1007/s10803-021-05132-3

Cited by 25 publications

(33 citation statements)

References 80 publications

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“…We identified several characteristics that predicted overall worsening mental health over the 10-month period that were consistent with previous parenting research suggesting that both parent and child level factors are likely to influence parental responses to stressors (Crnic & Low, 2002). In line with previous research conducted during the pandemic, being a younger parent (Pierce et al, 2020) and having a child with SEN/ND (Gillespie-Smith et al, 2021;Thorell et al, 2022) were associated with both high average levels and increases in mental health symptoms beyond the average change. Consistent with previous research (Purdy et al, 2021), working out of the home, whilst on average indicating lower levels of mental health symptoms than working at home, also predicted overall worsening mental health.…”

Section: Discussionsupporting

confidence: 87%

“…For example, in the general (adult) population, being younger, having a pre-existing mental health diagnosis, living without a partner, or having lower 4 educational attainment were repeatedly associated with greater increases in mental health difficulties at the start of the pandemic (e.g., Fancourt et al, 2020;Kwong et al, 2021;O'Connor et al, 2021;Pierce et al, 2020). Surveys suggest that many parents faced extra challenges (Christie et al, 2022) such as having to combine working from home with homeschooling their children (Purdy et al, 2021), as well as caring for children with special education needs (SEN;Thorell et al, 2022) or neurodevelopmental (ND) conditions (Gillespie-Smith et al, 2021). It is also likely that parental experiences would have differed based on their children's ages due to the different caretaking requirement for younger and older children.…”

Section: Introductionmentioning

confidence: 99%

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Changes in UK Parental Mental Health Symptoms over 10 months of the COVID-19 Pandemic

Skripkauskaitė¹,

Creswell²,

Shum³

et al. 2022

Preprint

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Background. The threats to health, associated restrictions, and economic consequences of the COVID-19 pandemic have been linked to increases in mental health difficulties for many. Parents, in particular, have experienced many challenges such as having to combine work with home-schooling their children and other caring responsibilities. Yet, it remains unclear how parental mental health has changed throughout the pandemic or what factors may have mitigated or compounded the impact of the pandemic on parents’ mental health.Methods. We examined monthly survey data from two linked UK-based longitudinal studies: Co-SPACE and Co-SPYCE. Data from 5,576 parents/carers of 2-16-year-old children collected between April 2020 and January 2021 was analysed using mixed-effect modelling and latent class growth mixture modelling.Results. Parental stress and depression, but not anxiety, were higher during the periods of restrictions. This pattern was most pronounced for parents with primary-school-aged children, whilst parents with secondary-school-aged children showed greater continuous increases in mental health symptoms from the start of the pandemic. Although around three quarters of parents reported consistently low mental health symptoms, a substantial minority reported consistently high or increasing symptoms of anxiety, stress, and depression. The latter were more likely to be parents who were younger than average, were a single adult in the household, had a pre-existing mental health diagnosis, or had a child with special educational needs or a neurodevelopmental disorder.Conclusions. These findings emphasise how different personal circumstances and pre-existing inequalities shaped how parents were affected by this unprecedented global pandemic and highlight the need for support and consideration to meet the needs of families in the future.

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Section: Discussionsupporting

confidence: 87%

Section: Introductionmentioning

confidence: 99%

Changes in UK Parental Mental Health Symptoms over 10 months of the COVID-19 Pandemic

Skripkauskaitė¹,

Creswell²,

Shum³

et al. 2022

Preprint

View full text Add to dashboard Cite

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“…This pattern of low satisfaction was consistent across different learning groups (e.g., home and hybrid), across the four United Kingdom nations, between children with a SEND formal recognition status and those without, and between children in mainstream schools versus those in special or alternative provision. These findings align with the recent literature (Gillespie-Smith et al, 2021;Heyworth et al, 2021). The only exception was satisfaction with COVID-19 management; this was higher for families of children in school-based learning during school restrictions in January to March of 2021.…”

Section: Discussionsupporting

confidence: 90%

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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“…I G U R E 1 PRISMA flow diagram showing manuscript selection Parents, and particularly single parents, also described difficulties coping with the uncertainty of the situation, lack of control, and limited support being in place.Parents of children with special educational needs and/ or neurodevelopmental disorders (SEN/ND) Findings from several separate surveys of parents with SEN/ND children, also show how parents felt overwhelmed when trying to home-school their children, highlighting that they felt unprepared, inadequate, and worried that they were letting their child down(Greenway & Eaton-Thomas, 2020;Toseeb et al, 2020). Further, four surveys indicated that parents of children with SEN/ND may have experienced particular detriments to their wellbeing during lockdown(Gillespie-Smith et al, 2021;Shum et al, 2021;Thorell et al, 2021;Waite et al, 2020).In survey data collected from the first 5000 parent/carers who participated in the Co-SPACE study, the majority (51.5%) of the 871 parents with children with SEN/ND felt stressed about their child's behaviour compared to only 4% of parents without a SEN/ND child(Waite et al, 2020). Parents of children with SEN/ND also reported that they would benefit from additional support with a larger proportion (relative to parents without SEN/ND) stating they needed support managing their child's emotions, behaviour, education, and family relationships.…”

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confidence: 99%

Examining harmful impacts of the COVID‐19 pandemic and school closures on parents and carers in the United Kingdom: A rapid review

et al. 2022

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Background As a result of the COVID‐19 pandemic, school closures meant that for many households, home and school environments became intertwined. Parents and carers found themselves taking on the role as de‐facto educators, as well as balancing working from home and caring for additional members of the household. Understanding the full extent of the effects incurred by parents and carers during school closures is vital to identifying and supporting vulnerable families. This rapid review aimed to appraise the available evidence on the potential effects of the COVID‐19 pandemic on UK parents and carers. Methods Searches for academic literature were conducted using Proquest Central, Scopus, and Google Scholar between 21st and 28th April 2021 using search terms describing “parents and carers”, “COVID‐19” and the “UK”. Additional literature was identified on relevant parents and carers' organisations websites including charity reports. Results Thirty‐two articles were found relating to harms affecting parents and carers in the UK High levels of psychological distress, including anxiety and depression, were consistently identified in the general parent population, and especially in parents caring for a child with special educational needs and/or neurodevelopmental disorders (SEN/ND). Charity reports indicated that many parents, especially those from an ethnic minority background and kinship carers, were worse off financially and with food insecurities, whereas empirical evidence showed that mothers were more likely to initiate furlough for themselves compared with fathers or childless women. Domestic abuse support services also reported a sharp rise in demand during lockdown restrictions, and practitioners reported an increase in child and adolescent violence towards parents. Conclusions Given the known impacts of parental stress, mental health problems, domestic violence and financial hardship on children's development, it is critical that these findings are taken into account in case of future pandemics to minimise harms both to parents and their families.

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The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK

Cited by 25 publications

References 80 publications

Changes in UK Parental Mental Health Symptoms over 10 months of the COVID-19 Pandemic

Changes in UK Parental Mental Health Symptoms over 10 months of the COVID-19 Pandemic

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

Examining harmful impacts of the COVID‐19 pandemic and school closures on parents and carers in the United Kingdom: A rapid review

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