Childhood disability is widely conceptualized as the challenging interaction between a child’s impairments, functional difficulties or developmental delays and contextual factors (e.g., access to support services and resources) that are necessary to fully support the child’s ability to engage in developmentally appropriate activities (e.g., walking) and participate in society as desired (e.g., play with peers at a playground) (Halfon et al., 2012; Rosenbaum & Gorter, 2012; World Health Organization, 2007). Although the risk and severity of COVID-19 illness is relatively low in children (Raba et al., 2020; Viner et al., 2020), the pandemic has serious ramifications for children with disabilities or developmental delays. Widespread closures of many services (e.g., school and child care) have occurred to control the rapid spread of COVID-19 in many parts of the world. The resulting impact of these closures are important to consider given their important contribution to children’s overall development and health (Hoffman & Miller, 2020; Lancker & Parolin, 2020; Masonbrink & Hurley, 2020).
Family environments are instrumental in determining the impact of the pandemic on children’s development and health (Gartland et al., 2019; Prime et al., 2020). Research persistently illustrate that healthy and supportive family environments (e.g., supportive parent-child interaction, healthy adult relationships and financial stability) are protective factors that support children to navigate challenges in life (Benzies & Mychasiuk, 2009; Gartland et al., 2019; Zolkoski & Bullock, 2012). Alternatively, adverse family circumstances (e.g., abuse and poverty) are risk factors that impede children’s development and health during challenges in life (Hefferon et al., 2021; Prime et al., 2020). In the context of the COVID-19 pandemic, specialized services (e.g., physiotherapy and occupational therapy) needed by children with disabilities or developmental delays may be delivered by their families at home because of limited access to community services and programs (Cacioppo et al., 2021a). Although online or virtual service and program delivery can improve continuity of support services and programs during the pandemic (Camden et al., 2020; Goldschmidt, 2020; Kim & Fienup, 2020), this may be inaccessible to families without adequate technology to connect. Families who access online or virtual services and programs may also lack additional resources normally available to professionals for optimal program delivery had in-person delivery been possible.
The impact of the pandemic on children with disabilities or developmental delays and their families may be mixed. Studies have identified positive impacts such as improved mood and behavior for some children in China (Zhang et al., 2020), improved mental health for some children and families in the United Kingdom (Asbury et al., 2021), and improved relationships for some families in the United Kingdom and United States (Couper-Kenney & Riddell, 2021; Neece et al., 2020). Negative impacts such as behavior problems in children, increased mental health issues in both children and parents, financial concerns as a result of parental job loss, reduced physical activity in children, and limited access to health and educational services have been reported by other families in the United States, United Kingdom, China and France (Cacioppo et al., 2021b; Couper-Kenney & Riddell, 2021; Jeste et al., 2020; Neece et al., 2020; Theis et al., 2021; Varengue et al., 2021; Zhang et al., 2020). Although literature on the impact of the pandemic on families of children with disabilities is growing around the world, recent scoping reviews demonstrate that empirical studies are limited and studies from many parts of the world, including Canada, are underrepresented (Croft & Fraser, 2022; Jesus et al., 2021; Shorey et al., 2021).
The COVID-19 pandemic has been described as a form of disaster (e.g., public health, natural and unnatural) (Alabdulmonem et al., 2020; Dzigbede et al., 2020; Mostafanezhad, 2020; Seddighi, 2020). Shorey et al. (2021) profiled the challenges and needs of families of children with neurodevelopmental disorders during the COVID-19 pandemic, including behavioral and emotional issues and the difficulties of not having a consistent routine. As well, through a scoping review and thematic analysis Jesus et al. (2021) highlight health and social participation disparities among people with disabilities relative to people without disabilities during the first wave of COVID-19 pandemic due to lock-down related measures. They note primary themes such as disrupted access to healthcare (beyond that related to COVID-19) and psychological consequences from disrupted routines, activities and support (Jesus et al. 2021). While past literature suggests that the adverse effect of disasters on children with disabilities and their families may be exacerbated by complex social and health inequalities, it is also important to consider the possibility of resiliency within families. Protective factors such as support from others, familial relationships and parenting involvement and practice can sometimes mitigate the outcomes from negative experiences (Morgart et al., 2021). In order to gain an understanding of the full experience of children with disabilities and their families during disasters and post disaster recovery, it is important to explore the firsthand experiences of children with disabilities and their families, an area of research which has not yet been explored extensively (Peek & Stough, 2010; Stough et al., 2017).
This current study examined the relationship between having a child with a disability or developmental delay and early impacts of the COVID-19 pandemic on family environments that influenced early childhood development and health in the Maritime provinces of Canada. The Maritime provinces of Canada include Nova Scotia, New Brunswick and Prince Edward Island. According to Human Resources and Skills Development Canada (2011), Nova Scotia has the highest rate (4.6%) of disabilities (e.g., communication disorders, developmental delays, learning disabilities, emotional/psychological disorders, chronic conditions, hearing impairments, agility and mobility impairments) among children aged 0–14 years in Canada. The rates of disabilities among children aged 0–14 years in Prince Edward Island (4.1%) and New Brunswick (4.0%) are also above the national average (3.7%) (Human Resources and Skills Development Canada, 2011). A more recent data, which only focuses on autism spectrum disorder among children aged 1–17 years, show that New Brunswick has the highest rate (4.1%) in Canada, the rate in Prince Edward Island (3.2%) is above the national average (2.0%) and the rate in Nova Scotia (1.5%) is lower than the national average (Public Health Agency of Canada, 2021). Pre-pandemic studies reveal that families in the Maritimes confront barriers (e.g., limited access to services and programs) that compromise their ability to support the early childhood development and health of their children with disabilities or developmental delays (Charlton et al., 2017).
The Maritime provinces of Canada implemented swift and timely public health measures and restrictions (e.g., school closures, widespread lockdown and gathering restrictions) to control the pandemic shortly after other Canadian provinces recorded their first presumptive COVID-19 cases. Given that different countries and jurisdictions within countries, including Canada, implemented varied levels of measures at different times to address the pandemic, a lack of context-specific evidence on the impact of the pandemic on children with disabilities or developmental delays can impede the development of potential support for this population in different contexts. This study addressed the following research questions: Is there a relationship between having a child with a disability or developmental delay and changes to family environments that influenced early childhood development and health as a result of the first wave of the COVID-19 pandemic in the Maritime provinces of Canada? What were the types of changes to family environments experienced by families of children with disabilities or developmental delays during the first-wave of the pandemic?
Methods
Study Design
This study uses an explanatory mixed method design through a cross-sectional survey that included both closed (quantitative) and open-ended (qualitative) questions (Creswell & Plano Clark, 2017).
Procedures
A panel of experts developed the survey to improve its validity to assess COVID-19 pandemic impacts on early childhood development. In particular, the survey was developed by the Early Childhood Collaborative Research Centre at Mount Saint Vincent University, Nova Scotia, Canada, in collaboration with government and local health authorities to rapidly assess the preliminary impacts of the first wave of the pandemic on early childhood development. Twenty items on the survey were combined to produce a Likert scale to assess how participants rated changes to their family environments that influenced early childhood development and health as a result of the COVID-19 pandemic (McIsaac et al., 2022). The scale had satisfactory Cronbach’s alpha level of 0.76 (n = 1769) (Taber, 2018). The scale described three critical areas of changes to family environments at the beginning of the pandemic: Family access to resources and social support, parenting Abilities and self-care, and home Routines and Environments (FARE Change Scale, Table 1). The items included in the scale were informed by research on factors that promote early childhood development and health (Black et al., 2017). Each item was rated on a 5-point Likert: 1 = much less change; 2 = less change; 3 = about the same change; 4 = more change; and 5 = much more change. The item responses were summed to produce the total scores, which ranged from a minimum value of 1 to a maximum value of 100. The higher the score of a participant, the more positive this participant rated changes to their family environments as a result of the pandemic.
Table 1
The Family access, parenting Abilities, home Routines and Environments change scale (FARE Change Scale) generated from the cross-sectional survey
Items (all rated from 1 to 5) | Reliability statistics | Item statistics | ||
|---|---|---|---|---|
Cronbach’s alpha | M | SD | n | |
0.76 | ||||
Family access to resources and social support | ||||
My child has time with their friends | 1.08 | 0.32 | 1769 | |
I feel disconnected to my friends/familya | 2.17 | 1.00 | 1769 | |
Our family is able to access safe outdoor space | 2.86 | 0.98 | 1769 | |
Our family is experiencing financial difficultiesa | 2.90 | 0.83 | 1769 | |
Our family is able to access healthy foods | 2.97 | 0.57 | 1769 | |
Parenting Abilities and self-care | ||||
I find it difficult to manage my child’s behaviora | 2.65 | 0.85 | 1769 | |
I feel comfortable supporting my child’s play | 3.07 | 0.80 | 1769 | |
I feel rested | 2.18 | 1.08 | 1769 | |
I have time to take care of myself | 2.09 | 1.08 | 1769 | |
I have time to prepare healthy meals | 3.23 | 0.93 | 1769 | |
Home Routines and Environments | ||||
My child plays independently | 3.24 | 0.87 | 1769 | |
My child plays outside | 3.20 | 1.18 | 1769 | |
My child has easier bedtime and sleep routines | 2.64 | 0.89 | 1769 | |
My child spends time using screens (movies/shows, video games, online resources)a | 1.89 | 0.82 | 1769 | |
My child has time with family | 3.75 | 1.46 | 1769 | |
My child has consistent mealtime and snack routines | 2.89 | 0.82 | 1769 | |
Our family plays together | 3.85 | 0.76 | 1769 | |
Our family reads together | 3.45 | 0.73 | 1769 | |
Our family cooks together | 3.62 | 0.75 | 1769 | |
Our family eats together | 3.56 | 0.78 | 1769 | |
Open-ended questions included in the survey allowed participants to provide in-depth description of changes to their family environments. The open-ended questions asked participants to describe changes to their children and family since the COVID-19 closures and physical distancing advice, and the impact of the pandemic on access to support services and interventions such as developmental or early behavioral interventions, and speech and language therapy for their children.
Participants
The participants were recruited through key online communities and family focused organizations (e.g., child care and family resource centres), social media campaigns and other relevant organizations and people in our network. The inclusion criteria were that a participant had to be a primary caregiver of one or more children with or without disabilities or developmental delays aged 0–8 years and live in the Maritime provinces of Canada (i.e., Nova Scotia, New Brunswick or Prince Edward Island). Participation in this study was voluntary and a participant had to voluntarily provide their consent to be eligible to complete the online survey.
Consistent with the widely used definition of childhood disability that emphasizes the challenging relationship between a child’s impairments, functional difficulties or developmental delays and contextual factors such as support services and interventions that can promote the optimal functioning, development and health of the child (Halfon et al., 2012; Rosenbaum & Gorter, 2012; World Health Organization, 2007), families of children with disabilities or developmental delays were identified from two key support services and interventions regardless of their diagnosis. The two key support services and interventions were developmental or early behavioral interventions, and speech and language therapy. These two services and interventions are used by children experiencing a gap between their functional abilities and developmental milestones typically expected for their age (Bruder, 2010; Law et al., 2017). Further, families described their children’s specific impairments, functional difficulties or developmental delays.
Ethics
Ethics approval was obtained from the research ethics board of Mount Saint Vincent University in Canada.
Data Collection
The survey was administered online through SimpleSurvey, a web-based survey tool, from April 14 to May 4, 2020. The link to the survey was distributed to as many eligible participants as possible through key online communities and family focused organizations (e.g., child care and family resource centres), social media campaigns, and other relevant organizations and people in our network. At the beginning of the survey, participants were provided the opportunity to enter their name into a draw for one of two $50 gift cards in recognition of their time.
Data Analysis
Quantitative
Hierarchical linear regression (entered method) was performed to assess whether having a child with a disability or developmental delay predicted participants’ scores on the FARE Change Scale. The scatterplot of regression standardized residual appeared rectangular and showed no signs of funneling, suggesting that the variance of the residuals was constant and met the assumption of homoscedasticity. According to the normal probability plot (P-P) and the scatterplot of regression standardized residual, the data were normally distributed and had very few outliers with standardized residuals < −3.3 and > 3.3. Further, the Cook’s distance values were < 1, suggesting that there were no influential data points that could potentially lead to a bias model. The variance inflation factor (VIF) of the variables included in the analysis met the recommended multicollinearity criteria of < 5 (Craney & Surles, 2002; Vatcheva et al., 2016). About 4.8% of the total item level responses were missing values. Data missingness was handled with multiple imputation involving 5 imputations (Madley-Dowd et al., 2019; van Ginkel et al., 2020). The analysis was done with IBM SPSS 26.
Qualitative
Thematic analysis (Braun & Clarke, 2006, 2019) was used to identify themes from the open-ended questions. Two authors (DL and MM) independently read through the participants’ responses, generated initial codes and identified themes to improve qualitative rigor through the use of multiple data analysts (Nowell et al., 2017). The two authors met to discuss their findings and reached a consensus on the key themes that should inform further analysis. The lead author engaged in ongoing analysis to refine the initial themes identified and summarized the preliminary findings. All authors reviewed the preliminary findings and met to discuss and finalize the overarching themes and sub-themes reported in this study as the findings. Another strategy that was used to enhance the qualitative rigor of this study was triangulation (Nowell et al., 2017), which involved asking both closed (quantitative) and open-ended (qualitative) questions during the survey.
Results
Sociodemographic Characteristics of Participants
This study involved 1976 primary caregivers of children aged 0–8 years, of which 256 (13%) had children with disabilities or developmental delays and 1720 (87%) had typically developing children. Most of the participants in both groups of caregivers were mothers, between ages 26 and 45, of European descent, co-parenting in the same house, employed full time, living in Nova Scotia, and also had household income above 100,000 Canadian dollars (Table 2).
Table 2
Descriptive characteristics of participants
Variables | Caregivers of children with disabilities or developmental delays | Caregivers of typically developing children | Full sample |
|---|---|---|---|
n | n | n | |
Services and interventions | |||
Speech and language therapy (SLT) only | 156 | 156 | |
Developmental or early behavioral interventions (DEBI) only | 33 | 33 | |
Both SLT and DEBI | 67 | 67 | |
Children’s age | |||
0–12 months | 19 | 177 | 196 |
12–18 months | 17 | 184 | 201 |
19–35 months | 69 | 451 | 520 |
3–5 years | 68 | 989 | 1057 |
6–8 years | 109 | 646 | 755 |
Relationship with child | |||
Mother | 237 | 1547 | 1784 |
Father | 14 | 150 | 164 |
Othera | 23 | ||
Participants’ age | |||
≤25 yearsa | 56 | ||
26–35 years | 132 | 751 | 883 |
36–45 years | 107 | 774 | 881 |
46 and abovea | 80 | ||
Parenting arrangement | |||
Single parenting | 30 | 124 | 154 |
Co-parenting in same home | 206 | 1390 | 1596 |
Co-parenting in different homes | 13 | 95 | 108 |
Employment | |||
Full-time job | 164 | 1243 | 1407 |
Part-time job | 30 | 190 | 220 |
Parental leave | 15 | 140 | 155 |
Stay-at-home parent/caregiver | 34 | 128 | 162 |
Registered student (full-time or part-time) | 13 | 74 | 87 |
Unemployed but looking for worka | 43 | ||
Unable to work due to illness or disabilitya | 25 | ||
Household income (CAD) | |||
Less than $20,000 | 14 | 54 | 68 |
$21,000–$40,000 | 29 | 129 | 158 |
$41,000–$60,000 | 44 | 171 | 215 |
$61,000–$80,000 | 29 | 197 | 226 |
$81,000–$100,000 | 42 | 244 | 286 |
More than $100,000 | 69 | 657 | 726 |
Ethnicity/cultural background | |||
Indigenous/Aboriginal | 10 | 64 | 74 |
Acadian | 41 | 253 | 294 |
European | 154 | 1045 | 1199 |
African | 12 | 58 | 70 |
Middle Easterna | 35 | ||
Asiana | 37 | ||
Province of residence | |||
New Brunswick | 64 | 437 | 501 |
Nova Scotia | 170 | 1137 | 1307 |
Prince Edward | 22 | 146 | 168 |
Among the 256 caregivers of children with disabilities or developmental delays, 156 accessed speech and language therapy (SLT) only for their children, 33 accessed developmental or early behavioral interventions (DEBI) only, and 67 accessed both SLT and DEBI. Forty-one caregivers described the specific conditions of their children who accessed these services and interventions. The conditions included autism spectrum disorder (ASD) and tentative ASD diagnosis (n = 15); learning difference, Down syndrome, developmental delays and intellectual disability, mental health conditions (e.g., anxiety disorders), physical or motor impairments and complex medical needs (n = 16); and hearing problem, speech and language disorders, attention-deficit hyperactivity disorder and sensory needs (n = 12). We grouped the conditions together to protect the anonymity of participants with specific conditions that were fewer in the sample. Some children had more than one condition.
Quantitative Results
Relationship between having a child with a disability or developmental delay and changes to family environments
The mean score of caregivers of children with disabilities or developmental delays (M = 55.33, SD = 7.84) on the FARE Change Scale was lower than the mean score of caregivers with typically developing children (M = 57.24, SD = 7.73). Pooled regression models revealed that having a child with a disability or developmental delay significantly predicted caregivers’ scores on the FARE Change Scale. According to the bivariate and multivariate coefficients (β), having a child with a disability or developmental delay significantly decreased a caregiver’s score by 1.95 (p < 0.001) (Table 3). On average, the multivariate results explained about 4% of the variance observed in scores on the FARE Change Scale (adjusted R2 = 0.04).
Table 3
Pooled coefficients (β) describing the relationship between having a child with a disability or developmental delay and caregivers’ score on the FARE Change Scale
Variables/Model | Bivariate model | Multivariate model | ||
|---|---|---|---|---|
β (SE) | 95% CI | β (SE) | 95% CI | |
Have a child with a disability or developmental delay (Yes/No) | −1.95 (0.53) | −2.98, −0.91*** | −1.95 (0.53) | −2.98, −0.92*** |
Children’s age | ||||
0–12 months (Yes/No) | −1.66 (0.87) | −3.36, 0.05 | ||
12–18 months (Yes/No) | 0.05 (0.64) | −1.20, 1.31 | ||
19–35 months (Yes/No) | 0.15 (0.46) | −0.76, 1.05 | ||
3–5 years (Yes/No) | 0.80 (0.40) | 0.01, 1.59* | ||
6–8 years (Yes/No) | 0.53 (0.43) | −0.30, 1.37 | ||
Caregivers’ age | 0.03 (0.39) | −0.82, 0.88 | ||
Mother (Yes/No) | −0.42 (0.60) | −1.59, 0.76 | ||
Single parenting (Yes/No) | −0.76 (0.69) | −2.11, 0.60 | ||
Employment | ||||
Full-time job (Yes/No) | 1.11 (0.77) | −0.40, 2.61 | ||
Part-time job (Yes/No) | 0.59 (0.80) | −0.99, 2.17 | ||
Parental leave (Yes/No) | −0.50 (1.10) | −2.65, 1.65 | ||
Stay-at-home parent/caregiver (Yes/No) | −0.80 (0.84) | −2.44, 0.84 | ||
Registered student (full-time or part-time) (Yes/No) | −1.28 (0.93) | −3.12, 0.55 | ||
Unemployed but looking for work (Yes/No) | 0.79 (1.31) | −1.78, 3.36 | ||
Unable to work due to illness or disability (Yes/No) | −3.73 (1.69) | −7.04, −0.42* | ||
Household income | 0.11 (0.13) | −0.15 (0.37) | ||
Ethnicity/cultural background | ||||
Indigenous/Aboriginal (Yes/No) | −0.91 (0.88) | −2.65, 0.81 | ||
Acadian (Yes/No) | −1.47 (0.51) | −2.48, −0.45** | ||
European (Yes/No) | −0.56 (0.40) | −1.35, 0.21 | ||
African (Yes/No) | 0.51 (0.95) | −1.38, 2.39 | ||
Middle Eastern (Yes/No) | −1.47 (1.43) | −4.39, 1.46 | ||
Asian (Yes/No) | 1.52 (1.76) | −2.24, 5.28 | ||
Province | ||||
Nova Scotia (Yes/No) | −1.25 (0.38) | −1.98, −0.51*** | ||
Constant | 57.22 (0.18) | 56.85, 57.59*** | 57.29 (1.77) | 53.71, 60.87*** |
Secondary results on other significant predictors of changes to family environments
The multivariate model showed that having a child aged 3–5 years, unable to work due to illness or disability, Acadian descent, and living in Nova Scotia significantly predicted caregivers scores on the FARE Change Scale. Having a child aged 3–5 years increased caregivers’ score on the FARE Change Scale by 0.80 (p < 0.05). The score of caregivers who were unable to work due to illness or disability during the pandemic decreased by 3.73 (p < 0.05). Being of Acadian descent decreased caregivers’ score by 1.47 (p < 0.01). Living in Nova Scotia decreased caregivers’ score by 1.25 (p < 0.001) (Table 3).
Qualitative Results
Two overarching themes were generated from the thematic analysis: (1) changes that were non-specific to disability; and (2) disability-specific changes.
Changes that were non-specific to disability
Home schooling and child care
Some participants revealed that school closures provided a good break for children previously experiencing difficulties at school (e.g., “crippling social anxiety”). Other participants discussed challenges due to conflicting employment responsibilities and home schooling or child care. Notably, anglophone participants whose children attended French immersion schools had challenges supporting their children to take online classes:
I feel that public schools should step in more than they did and utilize technology way more (teaching over ZOOM or google classroom videos). Parents who are working full time from home or as essential services personnel shouldn’t be required to assume responsibility for schooling, especially that teachers are still being paid for their full-time job. This has been the most frustrating part of isolation. Instructions sent from school are not very clear and it takes couple hours to just figure out what is being asked and how to do it and how to submit it, very frustrating especially for parents of kids who attend French immersion and whose parents don’t speak French (ID49, parent of a child who needed speech and language therapy).
Children’s understanding of the COVID-19 pandemic
While some participants explained that their children understood what was happening during the pandemic, others reported having challenges because their children were too young to understand the pandemic:
Due to his age, he has a hard time understanding why he can’t do normal things like go to the park or play with his friends. He also has a hard time with how long this is going on for and why it is taking so long (ID59, parent of a child who needed speech and language therapy).
Increased financial burden
Some participants noted that they incurred extra financial cost on groceries and entertainment for their children. They also reported that they had to keep paying for child care in order to maintain a space for their children at some centres:
Our grocery bill has doubled, we shop on-line only and nothing is on sale online like it used to be. We do not go in to the grocery store to take advantage of in-store sales. We have spent more on things for the kids to keep them entertained while we work. We were paying full fees to maintain 1 daycare space, while the other daycare is not charging during the closures …. I will continue to pay for the space at the larger daycare in preparation for when my youngest will need the spot and I feel it’s safe to send him (ID14, parent of a child who needed speech and language therapy).
Food behavior
Some participants revealed that they had more time during the pandemic to plan and cook home meals. Other participants indicated that their families were eating less healthy food as a result of the pandemic: “we’re avoiding going to the grocery store, relying on frozen or canned food so quality of food has been very poor and unhealthy” (ID05, parent of a child with autism).
Self-care
Some participants indicated that balancing parenting and working from home resulted in a more relaxed home environment: “due to the elimination of work commutes and extracurricular activities, I find we are more relaxed as a whole, even with 2 parents working and maintaining high expectations for our kids learning” (ID50, parent of a child who needed speech and language therapy). Other participants reported not having enough time for self-care: “I’m finding I’m not or rarely am [I] taking time for self-care. Focused on child, cooking, cleaning & absorbed in the news” (ID47, parent of a child who needed speech and language therapy).
Family relationships
While some participants reported that the pandemic enhanced their family time and bond, others revealed that they had poorer family time, more stress and more tensions in the family. For example, one participant reported: “my 5 year old has expressed being very happy to be home and able to spend more time with family” (ID32, parent of a child who needed developmental or early behavioral interventions). In contrast, another participant revealed:
[We’re] seeing a massive increase in overall family unhappiness and stress (both parents at the absolute end of their ropes, struggling to be as patient, creative and compassionate with children as before, and with each other, and struggling to avoid showing children stress and mental health issues triggered by stress and confinement) (ID13, parent of a child with autism).
Disability-specific changes
Home schooling and child care
Some participants found some of the disability-specific needs of their children easier to manage at home:
My oldest is autistic, and it’s actually been easier to accommodate her sensory needs. She struggles to enjoy activities in loud spaces - local art places are doing take home kits etc., and it’s been so great to be able to access these activities and provide them to her in the comfort of our home. She is much happier (ID20, parent of a child with autism).
Other participants reported that they lacked the special educational needs support their children received at school:
I am home schooling her and she does not have her assistive technology that she is able to use at school or any of her school team (OT [occupational therapy], PT [physical therapy], Speech therapy) is also not happening …. She does not want to do most of her school work that is expected of her because she cannot focus and or sit still long enough (ID29, parent of a child with developmental delays).
Children’s understanding of the COVID-19 pandemic
Some participants highlighted that the challenges they faced with respect to talking to children about the pandemic was related to disability:
It is easy to explain the situation to my 10 year old …. My 8 year old is a happy kid as well but [I] imagine this situation must be confusing to her and we can’t explain it because of her intellectual delays (ID44, parent of a child with intellectual delays).
Behavior and mental health
Many participants discussed that the disruption in their children’s regular daily routine and structure as a result of the pandemic and the children’s lack of understanding of the pandemic contributed to behavior problems, irritability, emotionality, sleep problems and mental health issues in their children. For example, one participant explained: “our eldest strives on structure and routine and often we are unable to provide that for her and this causes more tantrums/outbursts, disruptive sleep, and finding it harder to wind down at bedtime” (ID55, parent of a child who needed speech and language therapy). Another participant stated:
He always prefers to be away from other people, with his family, in the comfort and predictability of his home. But that changed after about a week or two, revealing I think that this has been stressful on him (the change of routine? maybe the perception, despite our best efforts, of the stress his father and I are under? the loss of the challenging but valuable contact with other children?), as he began to attack us, especially his sister, more and more aggressively and violently (ID66, parent of a child with autism).
Services and skills development
Some participants revealed they were able to support their children to develop certain skills (e.g., potty training and art) because their family spent more time at home. Other participants reported that their children’s development declined: “most of the progress that my children were making with the challenges set forth with their ASD [autism spectrum disorder] has declined or has greatly been reduced. In some areas they have had a complete regression” (ID36, parent of a child with autism). Participants attributed the decline in their children’s development to the lack of support services and interventions:
Well, my son again is autistic. His speech has suffered, because he hasn’t been seeing his speech therapist and early interventionist. He has no peers like he does at his babysitters. His sensory issues, speech, and traits are more prevalent (ID01, parent of a child with autism).
Further, a lack of appropriate assessments due to delays related to the COVID-19 pandemic impeded timely diagnosis of children’s needs and eligibility for programs and services:
We found out just after the state of emergency was declared that our son has been diagnosed with (initial diagnosis only by a pediatrician) a mental health disorder. The difficulty is, there needs to be more appointments/referrals made for him to see if there are other underlying conditions that will require him to be medicated in the near future. He needed to be assessed at the daycare level from an early childhood intervention care giver, but this is all on hold as is any referrals to the [appropriate services]. It has been a great source of stress for our family and because of the delays in services, I may not be able to help him be eligible for after school care in the fall (since he will not have all the supports in place that he needs). We are having a very hard time with this and feel like everything has just stalled for the services we would like to be accessing right now to help get more answers (ID02, parent of a child who needed developmental or early behavioral interventions).
Discussion
Public health measures and restrictions (e.g., widespread closures of services) to contain the COVID-19 pandemic in many parts of the world have unintended consequences for children’s development and health (Hoffman & Miller, 2020; Lancker & Parolin, 2020; Masonbrink & Hurley, 2020). Our study examined the relationship between having a child with a disability or developmental delay and early impacts of the COVID-19 pandemic on family environments that influenced early childhood development and health in the Maritime provinces of Canada (i.e., Nova Scotia, New Brunswick and Prince Edward Island). Our study involved a relatively large proportion of caregivers of children with disabilities or developmental delays (13%, n = 256). According to Human Resources and Skills Development Canada (2011), the average rate of childhood disabilities like communication disorders, developmental delays, learning disabilities, emotional/psychological disorders, chronic conditions, hearing impairments, agility and mobility impairments in Canada is 3.7%.
Our multivariate results showed that having a child with a disability or developmental delay significantly exacerbated the extent to which caregivers in the Maritime provinces of Canada perceived that the beginning of COVID-19 pandemic negatively impacted changes to their family environments that influenced early childhood development and health. These findings are consistent with recent scoping reviews that have highlighted negative impact of the pandemic on children with disabilities and their families (Croft & Fraser, 2022; Jesus et al., 2021; Shorey et al., 2021). Our findings suggest that despite the dearth of Canada-specific research (Jesus et al., 2021; Shorey et al., 2021) and differential pandemic measures across the world, children with disabilities or developmental delays and their families in the Maritime provinces of Canada experienced negative impact of the pandemic.
Our qualitative findings offered more nuanced findings that showed that the early impacts of the pandemic on the family environments that influenced early childhood development and health of children with disabilities or developmental delays were mixed and context-specific. Similar to studies from China, Germany, Israel, the United Kingdom and the United States which reported on benefits of the pandemic (e.g., improved mental health, behavior and family relationships) for some families of children with disabilities or developmental delays (Asbury et al., 2021; Couper-Kenney & Riddell, 2021; Hochman et al., 2022; Isensee et al., 2022; Neece et al., 2020; Zhang et al., 2020), our study identified a variety of positive impacts. Caregivers in our study described positive impacts such as break for children experiencing challenges at school, better management of some sensory needs (e.g., auditory) of children, stronger family bonds and more family time for activities (e.g., meal preparation and supporting children to develop important life skills such as potty training). These findings suggest that some of the changes to family environments associated with the early impacts of the pandemic (e.g., the flexibility of spending more time at home with family) provide important directions to adequately address some unmet needs that some families experienced before the pandemic into the future (e.g., school challenges and sensory needs management).
Our findings corroborate previous literature that describes negative impacts of the pandemic on families with children with disabilities or developmental delays (Jesus et al., 2021; Shorey et al., 2021) and families with typically developing children (Gadermann et al., 2021; Lateef et al., 2021). Caregivers in our study identified negative impacts that were non-specific to disability (e.g., mental health and behavior problems, increased financial burden, and compromised quality of food, self-care and quality of family relationships) and negative impacts that were disability-specific (e.g., limited access to support services and interventions). Pre-pandemic studies show that having a child with a disability is often associated with extra financial cost related to disability (e.g., specialized aids and services related costs) (Goudie et al., 2014; Lavelle et al., 2014; Mitra et al., 2017). As well, pre-pandemic studies reveal that families of children with disabilities are generally more vulnerable to experience higher levels of stress, poorer health and poorer family functioning than families with typically developing children (Lewandowski et al., 2010; Masefield et al., 2020).
Consistent with research that indicates that it can be difficult for preschool aged children to understand the COVID-19 pandemic and associated restrictions (Vasileva et al., 2021), some caregivers in our studies expressed that their children were too young to understand the changes occurring in their lives. Further, caregivers in our study felt it was harder to explain the pandemic to their children with intellectual and developmental disabilities. Our findings indicated that a lack of understanding of the pandemic and disruption in children’s regular daily routine and structure can negatively impact the behaviors, social-emotional wellbeing, sleep and mental health of children with disabilities or developmental delays. While research shows that typically developing children may also experience behavioral and mental health issues as a result of the pandemic (Christner et al., 2021; Cost et al., 2021), our findings demonstrate that there could be disability-specific factors (e.g., lack of understanding of the pandemic due to intellectual delays, and disruption in children’s regular daily routine and structure) that may exacerbate these issues in children with disabilities or developmental delays. Some disabilities (e.g., intellectual disabilities) may be associated with cognitive functioning, receptive and expressive language skills limitations that may impede the ability of caregivers to explain the pandemic to their children with such disabilities. Specific types of disabilities (e.g., autism spectrum disorder) are also known to impede children’ s ability to adapt to drastic changes to their regular routines and structure (American Psychiatric Association, 2013).
Our secondary results showed that having a child aged 3–5 years, being unable to work due to illness or disability, being of Acadian descent, and living in Nova Scotia were significantly associated with caregivers’ perception of the early impacts of the pandemic on their family environments after controlling for disability/developmental delay status of children and other sociodemographic variables (e.g., household income) (Table 3). These results indicated that caregivers of children aged 3–5 years perceived significantly better changes to their family environments. It is not known why caregivers of this age group in the Maritime provinces of Canada were more likely to perceive better impacts on their family environments. Caregivers of 3–5 years old in the United Kingdom have reported both positive (e.g., involving children in meal preparation) and negative (e.g., sleep disruption) impacts (Clarke et al., 2021). Studies indicate that various factors such as food insecurity and country of residence may contribute to whether the pandemic impacts on families of children aged 3–5 years are negative or positive (Ling et al., 2022; Okely et al., 2021).
According to our secondary results, the negative impacts of the pandemic on family environments were significantly exacerbated for caregivers unable to work due to illness or disability. While COVID-19 pandemic impacts on adults with disabilities or illnesses were not the primary focus of our study, these secondary results are consistent with our primary results that showed that the pandemic had a negative impact on the family environments of children with disabilities or developmental delays. Research has revealed that people with disabilities had a variety of negative experiences like disruption of personal assistance/community support services, increased family/caregiver burden, disruption of disability related health services, and difficulty in accessing online/virtual services and programs due to lack of adequate technology and support (Croft & Fraser, 2022; Jesus et al., 2021). These negative experiences can compromise family environments that influenced early childhood development and health for caregivers with disabilities.
We observed that caregivers of Acadian descent reported significantly increased negative changes to their family environments compared to non-Acadian caregivers. Acadian communities in the Maritimes are made up of descendants of French settlers who arrived in these provinces between 1604 and 1775 (Government of Canada, 2023). Pre-pandemic research in three small New Brunswick Acadian communities have found that adults with disabilities or caregivers of children with disabilities experience challenges associated with rurality and language which can impact feelings of isolation (Levesque, 2016). The literature indicates that there is an association between racial/ethnic disparities and COVID-19 pandemic impacts (Khanijahani et al., 2021; Magesh et al., 2021; Pickering et al., 2023). Notably, this literature has predominately focused on the experiences of Black, Indigenous, Hispanic, Asian and White people (Khanijahani et al., 2021; Magesh et al., 2021; Pickering et al., 2023). Our study adds to the literature by revealing the experiences of caregivers of Acadian descent during the early stages of the pandemic.
Our results revealed that Nova Scotia residents perceived significantly poorer changes to their family environments compared to residents of the other Maritime provinces. Nova Scotia has historically had high child poverty rates compared to the rest of Canada, and according to the 2022 report card on child poverty, had the highest rate compared to the other Maritime provinces at 18.4% in 2020 (Frank & Saulnier, 2023). This may contribute to the perceived poorer changes to family environments due to its negative impact on child development during life challenges (Hefferon et al., 2021; Prime et al., 2020).
Limitations
The extent to which our findings can be generalized is limited. Despite our extensive efforts to recruit participants from diverse sociodemographic backgrounds through the support of key online communities and family focused organizations (e.g., child care and family resource centres) and social media, most of the participants from the two groups of caregivers were mothers, of European descent, co-parenting in the same house, employed full time and had household income above 100,000 Canadian dollars. Due to the nature of the pandemic and the time of data collection (at the height of the first wave), in-person data collection was not feasible, but there were inherent limitations in the reach of the survey for participants who lack the necessary technology to support their participation (e.g., families living in rural communities with limited internet network or those who cannot afford the necessary technology).
Implications for Future Research
The FARE Change Scale we produced with 20 items on the cross-sectional survey had satisfactory reliability (Cronbach’s alpha = 0.76). While the FARE Change Scale provided a preliminary understanding of the early impact of the pandemic on family environments at the height of the first wave (i.e., April 14 to May 4, 2020) when knowledge about the pandemic and its impact on families were very limited, the scale lacked criterion validity. Open-ended questions allowed caregivers to provide in-depth description of their family environments to add context to their scores on the FARE Change Scale. Further studies are needed to evaluate the validity of the FARE Change Scale. More research is also needed to improve our understanding of how the experiences of families have changed throughout subsequent waves of the pandemic and post-pandemic recovery. Exploration of innovative approaches that can be used by researchers to make online data collection more accessible to participants from diverse sociodemographic backgrounds is worthwhile.
Implications for Policy and Practice
Our findings provide a preliminary understanding of how families of children with disabilities or developmental delays in the Maritime provinces of Canada adjusted to the sudden and unprecedented changes to their family environments at the beginning of the COVID-19 pandemic. These findings have implications for policy and practice regarding support for families of children with disabilities or developmental delays in post-pandemic recovery and future public health crises similar to the pandemic. Given that our study adds to the literature on the unique impacts of the pandemic on families around the world, it provides transferable insight to better inform policy and practice to address the specific needs of families of children with disabilities or developmental delays around the world. The positive experiences associated with the pandemic discussed by some families in our study offer important directions to adequately address some unmet needs that families experienced before the pandemic into the future. Measures to mitigate public health crises similar to the pandemic should take into consideration the needs of families of children with disabilities or developmental delays. Our findings also indicated that certain populations (e.g., caregivers who were unable to work due to illness or disability and those living in relatively more populated areas) experienced more negative impacts, suggesting a need for more adequate support for these populations. Our mixed methods study allowed for deeper understanding of the experiences of families at the beginning of the COVID-19 pandemic, which illustrates importance of gathering information from families to better inform service provision to address the needs of families during post-pandemic recovery and future public health crises similar to the pandemic.
Compliance with Ethical Standards
Conflict of Interest
The authors declare no competing interests.
Ethics Approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (Mount Saint Vincent University Research Ethics Board, 2019-183) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed Consent
This study involved a cross-sectional survey that was administered online. Participation in this study was voluntary and a participant had to voluntarily provide their consent to be eligible to complete the survey.
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