Background/Aim: Quarantine restrictions and the suspension of in-person learning have posed significant challenges and stress for parents while negatively affecting children’s behavioural, social, and emotional development. Parents of children with developmental disabilities (DDs) face additional difficulties across various of developmental domains and often experience heightened strain, low mood, mental health-related symptoms, and distress. During COVID-19, parents of children DDs have reported higher levels of parental stress, anxiety, along with lower levels of psychological well-being than those of children without DDs. The aim of this systematic review was to provide a comprehensive perspective through reviewing the existing literature to explore the parental stress encountered by parents of children with DDs due to COVID-19, and their coping strategies they employed for supporting their children in adapting to ongoing learning activities and addressing social-emotional needs during the COVID-19 crisis.

Materials/Methods: A systematic extensive search was conducted in several databases including PubMed, CINAHL, PsycINFO, ERIC, Google Scholar, and Google internet in English were used for the keywords search (i.e., parental/family stress/challenges, parents/caregivers, child/children with DDs, autism, ADHD, Neurodevelopmental Disorders, coping, strategies, COVID-19, pandemic, Canada), and thirty-one articles (including peer reviewed published articles and graduate school theses (between 2020 and 2024)) were included in the review based on inclusion and exclusion criteria. Two reviewers will independently screen the literature and extract data. A thematic analysis involves reading through the findings and themes was generated and confirmed. Article summaries were charted. 

Results: Themes of parental stressors were identified include disruptions to daily routines and increased workloads, difficulties in managing children’s emotional and behavioural problems leading to parental frustration, limited access to resources and various forms of support, experiences of mental health problems, experiences of social isolation, and reduced self-efficacy. Coping strategies highlighted include fostering family-teacher partnerships and psychological interventions are essential, creating a structured daily schedule, providing support and utilizing new technologies for online learning, promoting self-efficacy and resilience, and ensuring access to protective measures.

Discussion: Parents of children with DDs need specific attention and resiliency to face these challenges, family-friendly policies can help parents have a more balanced and adaptable life during the pandemic. More social support from family, friends, school, and the broader community are needed for parents of children with DDs. 

Conclusions: Parent stress increased significantly during COVID-19 pandemic when raising children with DDs due to pandemic lockdown measures. The systematic review outlined sources of stress and summarized supportive coping strategies. Our findings suggest that public health interventions should focus on addressing specific stressors and promoting effective coping strategies while considering the unique needs of these families to mitigate the impacts of pandemic.

COVID-19 pandemic emerged as a major global crisis, posing a significant threat to public health, and profoundly disrupting daily routines, work, education and social connections worldwide [1,2,3] Quarantine measures, including social distancing, and lockdowns, created unprecedented challenges. These included the closure or suspension of health and social services, schools, and daycares centers. The cessation of in-person learning promoted a swift transition to remote education, significantly altering most in-person social, educational and therapeutic programs [4,1,5,6,7,8] increasing stress levels [9], which let to negative mental health consequences, including psychological distress, depression, and anxiety among parents and caregivers. [10,11,12,13,14,15]. Additionally, children with disabilities experienced significant disruptions affecting their behavioral, social, and emotional development [16,17,18,19,20,21].

Those with developmental disabilities (DDs), particularly children, faced heightened infection risks and struggled to access therapies, maintain physical distancing, and adapt to routine changes [22,23]. Research highlights those individuals with autism faced additional challenges, particularly in accessing essential therapies and coping with disruptions in their daily lives [24]. The global public health emergency significantly heightened mental health risks for families of children with DDs [13,25,26]. Parents of children with DDs faced economic challenges, social marginalization, and elevated stress due to the abrupt disruptions in their routines [27,28,29,21].  Stressors included fears of infection, financial losses, employment insecurity, stigma, and difficulties accessing food, medication, and essential services such as transition to telehealth [1,30,16,31,32,33].

Parental stress, defined as “a state which arises from an actual or perceived demand capability imbalance in the parent’s functioning, which is characterized by a multidimensional demand for adjustment or adaptive behavior” [34, pg. 9]. Factors such as limited access to protection materials, inaccessible information, service closures, and   disrupted routines, including poor sleep, reduced exercise, and lower diet quality have been shown to negatively affect parental well-being [27,35,29, 36,37,35,29,36,37,33]. Research shows that parents of children with DDs are at a significantly higher risk of depression or other mental health challenges compared to parents of typically developing children in Canada [38,39,40,41,42]. In Canada, one in 16 children is diagnosed with a DD, such as autism, cerebral palsy, ADHD, or metabolic-genetic disorders, which affect cognitive, language motor, and behavioural development [43].

Recent studies indicated that Canadian parents of children with DDs faced heightened concerns and challenges during COVID-19. Key challenges included school closure, shift to remote learning for the educational transitions, concerns about academic success, online safety, lack of accessible information and supports, and disruptions of diagnostic services [1,44,45,35,28,29,46,16], longtime waiting list for children’s assessment, managing increased screen time on electronic devices, loneliness due to lack of social connections and being isolated, and reduced physical activity due to insufficient play spaces [1,44,45,28, 46,16,51], eating junk food [45], and struggles with remote learning, nearly half expressing concerns in academic remote learning [45,28]. Especially, racialized families of children with DDs faced different barriers such as inadequate government funding, inaccessible services, long wait times mental health care, systemic racism, limited school support, inadequate school support, and poor interprofessional collaboration [45,46]. Parents also reported concerns about their children’s physical and mental health, caregiver fatigue and exhaustion elevated stress, and anxiety levels [44,45,35,47,29,16,15],   lack of social support, worsened financial security, and loss the essential services [35,47,16], limited socialization for children [44,45,47,48,49], difficulties to manage children’s behaviours [35,28,46,48,16,49,50], and reduced patience, poor and harsh parenting behaviours, admitted to scolding, or yelling at their children [50]. A recent study [49] used mixed methods found that caregivers of children with disabilities and developmental delays had lower scores in accessing resources and social support, and lower self-care than ones of children without developmental delays in the quantitative study, and also the qualitative results showed that caregivers identified negative impacts from COVID-19, including many disruptions in children’s regular daily routine and structures, mental health problems, increased financial burdens, limited access to support services, and interventions.

Researchers emphasized the need for practical coping strategies and sufficient support to help families of children with DDs manage challenges and deal with the burden of increased care demands during COVID-19 in Canada [1,29,50]. Many parents actively sought available resources, including school and community tailoring services, ensure continuity of care, rehab, primary care, acute care, mental health support, various therapies and educational assistance, and online social programs and virtual platforms, to help their children to avoid social isolation and maintain a sense of connection [1,47,48,51,52,53]. Parents reported keeping safe during pandemic were essential, educating children with DDs to follow the appropriate requests and measures to avoid the infection from COVID-19 virus [16,49].

Parents and caregivers reported helping their children participate in daily family routines, understand children’s needs [48], incorporating regular times for learning, meals, play activities and relaxation time with the family members. They shared activities provided opportunities for communication and strengthened families’ cohesion [44,48,16]. Parents created some physical activities, organized children’s leisure activities, and arranging virtual meetups with relatives and friends to support their social connections and overall well-being. Moreover, parents used positive reinforcement strategies to provide feedback to children with DDs. This approach encouraged active learning and maintained their children’s enthusiasm for exploration, avoiding the stress and overwhelm often associated with setting overly ambitious goals [44,54,55]. Additionally, coping strategies for autistic individuals and their families during the COVID-19 in Canada emphasized the importance of fostering resilience, self-efficacy, acceptance, and positive family function [1,16, 56,51].

Given COVID-19 pandemic presented significant negative impacts on families of children with DDs in Canada, it is important to support their mental health and well-being of parents with children with DDs to deeply understand their challenges and effective coping strategies during and after pandemic. This systematic review aimed to synthesize findings from research on challenges and copings of families of children with DDs, incorporating commentary, brief report, scoping review, quantitative, qualitative, and mixed-method studies provide a comprehensive perspective to examine existing literature on 1) parental stress as the unique challenges faced by caregivers of children with DDs during COVID-19 and 2) their coping strategies in Canada during pandemic for providing support and assisting their children with DDs in adapting to the continued learning activities and social-emotional needs during or after COVID-19 crisis and to consolidate parenting interventions.

A systematic review of the extensive search was conducted, including search strategies, eligibility criteria, what data was extracted from the selected research articles, and what the variables of interest were. Online databases (PsycINFO, CINAHL, PubMed, MEDLINE, EBSCOhost, ERIC, and Google Scholar), the internet (Google) from January 2020 to June 2022 in English were used for the keywords search (i.e., “parental/caregiver/family stress, not (before 2020)”, AND “coping, strategies for parents of child/children (≤12 years old) with developmental disabilities” OR “autism, or ADHD, or neurodevelopmental disorders”, AND “COVID-19/coronavirus/pandemic” AND “Canada”). The following eligibility criteria for inclusion were used to select articles for this study: (1) written in English; (2) published after 2020; (3) were full-text articles; (4) identified stressors and coping strategies for parents/caregivers/families of children with DDs (5) Canada. Articles not relevant to the research aims were all excluded from this study. A second round of searches were in September and November 14th of 2024 to identify new empirical studies that were published after the original search time period. Exclusion criteria included conference abstracts, published in other languages, guidelines, and syllabus materials. Thirty-one articles (including peer reviewed journal articles, graduate school theses (between 2020 and 2024)) were included in the review based on inclusion and exclusion criteria (see Figure 1).

Figure 1: Flow-chart depicting the search strategy in the review.

Two reviewers independently screened the title, abstracts, findings of the articles, read the full texts to assess eligibility and determine if the selected articles met the inclusion criteria, and extracted information from each article and categorized themes related to the impact of COVID-19 on parental stress and coping strategies during the pandemic. Any disagreements regarding the content themes were solved through discussions.  A thematic analysis involves reading through the findings and themes was generated and confirmed. The following data items were extracted for each study, including the authors’ name, year of publication, study design, aim of article, main findings, sample characteristics, and method of data collection. Article summaries were organized in a chart format (see Table 1). 

Table 1: Parental stress and coping strategies based on characteristics of children

The systematic review design was used in this literature study.

Disruptions to daily routines, and increased workloads.

In March and April 2020, Canada implemented schools and daycare closures, among other measures, to prevent the spread of Covid-19. These shutdowns negatively impacted student learning and socializations. Parents struggled with online learning, faced challenges keeping up with school assignments, and expressed heightened concerns about the future academic developments of children with DDs [1,44,45,35,28,29,46,48, 16,50,53,54,55]. A scoping review [15] on mental health and well-being of autistic children and youth highlighted several challenges faced by parents and caregivers, including school, campus program, and service closures resulted in loss of essential services, which increased unpredictability [35,44,47,16,48,50,54]. Additionally, parents were required to take on extra roles, such as managing children’s daily schedules while continuing their own work, leading to increased workloads. Many were overwhelmed by the demands of caring for their children without the daily support of specialists, coupled with other obligations and responsibilities [47,16,54]. 

Difficulties in managing children’s emotional and behavioural problems leading to parental frustrations.

Restricted access to in-person services significantly worsened behaivour and development in children with DDs due to a loss of stability, and predictability, negatively affected the function of the family unit [35,47, 28,46,48,16,50,49]. Children with DDs experienced drastically altered routines, leading to increase their anxiety, frustration, tension, aggression and rigidity [44,47,50]. Some children with autism and other neurodevelopmental disorder struggled to comply with certain public health measures, some children with sensory disorders were sensitive to the touch and smell of masks and hand sanitizers caused parents anxiety [47,54,55]. Additionally, some autistic children displayed greater physically aggression and volatility [44,16,59], further escalating parental stress and frustration. These challenges heightened emotional strains and behavioural difficulties for parents, who often reported feeling frustrated, exhausted, overwhelmed, and even aggressive, which sometimes led to harsh parenting practices [50,49]. The increased demands of addressing their children’s emotional and academic needs contributed to an authoritarian parenting style, escalated family tensions, and even violent behaviours within some households [47,50]. 

Limited access to resources, services, and various forms of support. 

In March and April 2020, Canada shut down schools and daycare centers as part of measure to prevent the spread of Covid-19, leading to a significant disruption in the educational system [47,15,55]. Parents reported receiving insufficient support from government. They faced a lack of external resources, such as programs for youth and children, closed schools and community services, limited access to healthcare facilities and treatment centres, lack of therapeutic supports in the schools, delayed therapeutic services or shifting health services to virtual mode, and extension of wait-lists for early intervention programs and reduced access to essential therapy hours (e.g., speech and language therapy, behavioural therapy, and occupational therapy) critical for their children [1,44,45,35,47,28,29,46,16,55,53,54]Parents also reported the challenges related to the absence of in-person assessment tools necessary for diagnosing children with specific needs [46,33]. The reliance on telehealth posed significant obstacles, preventing children and families from receiving the care they needed due to concerns about the COVID-19 infection, and difficulties accessing appropriate interventions [15,16, 49,51] Additionally, families required internal resources such as user skills, reliable internet connections, effective coping strategies to adapt to these new pressures. Furthermore, one recent research [46] indicated that low-income families and single parent of children with disabilities decreased likelihood of receiving services.

Parents of children with DDs experienced social and economic marginalization during the pandemic COVID-19 [28]. Caregivers reported insufficient medical support [47], limited social networks, and activities [47], increased financial insecurity [28,16], and interruptions to financial assistance, making it challenging to secure funding [28]. They also faced a lack of connection with family and friends, as well as insufficient dedicated support for parents [45,51]. These factors were compounded by job losses and reduced income, further exacerbating the stress and challenges faced by these families. 

Experiences of mental health problems. 

Parents caring for children with DDs during the COVID-19 pandemic have experienced significant deficits and delays in various areas of development, as well as unique additional strains. These include low mood (e.g., depression, anxiety, suicidal ideation, and distress), and other mental health-related symptoms such as frustration, increased vulnerability, isolation, sense of loss, anger, fears, exhaustion, burnout, shame, and guilt over difficulties managing their children’s behaviour. Other challenges include cultural stigma and discrimination, concerns about children’s online safety, mood disturbance, and a perceived failure in fulfilling their parental role. Parental anxiety related to job loss, economic uncertainty further heightened their vulnerability and negatively affected their well-being [44,45,35,47,28,29,15,6,46,15,51,52, 54,81,83,84]. Furthermore, parents exhibited lower levels of resilient coping [29]. Limited access to wellness services exacerbated these challenges, significantly impacting the mental health of both parents and their children with DDs [55].

Experiences of social isolation and reduced self-efficacy. 

The COVID-19 pandemic has presented unique challenges for families and caregivers of children with DDs. Both parents and children identified lack of socialization, limited social engagement, restricted access to spaces for physical activities and increased social isolation as significant challenges. These issues were compounded by increased screen time and reliance on electronic devices [1,44,45,35,47,28,48,49,52,51,53]. Prolonged home isolation has been linked to potential long-term negative consequences for the psychological wellbeing of both children and caregivers. Parents reported difficulties adhering to public health measures, which contributed to isolation and elevated stress levels4 [35, 28,16,54]. A recent study focusing on Canadian fathers of children between the ages of six and 12 with autism spectrum disorder experienced social isolation, neglected their children’s needs, and highlighted a negative perception of their self-efficacy and lack of social support for fathers [51].

Coping strategies for parents of children with DDs under COVID-19 Fostering family-teacher partnerships and providing psychological interventions are essential. 

Parents often reach out to schools and teachers for receiving additional support and services. Through these interactions, parents can become more familiar with school policies regarding children with special needs. Schools can play a critical role by offering essential resources such as daily necessities, educational services, rehabilitation programs within the school settings. Additionally, schools can provide basic food and welfare support for children with developmental disabilities and families [1,21,48]. Access to psychological interventions should also be prioritized to help alleviate mental health challenges faced by parents with developmental disabilities [48].

Creating a structured daily schedule. 

Creating a structured daily schedule has been an effective strategy for parents and caregivers helped children with DDs. They implemented various methods to help their families cope with stressors, such as organizing leisure activities, engaging in media entertainment, and exploring hobbies like baking, gardening, painting, meditation, and so on. Parents also incorporated physical activities and exercises into their routines [1,44,28,16,51] stories daily, shows, videos games, and enhancing quality family time through reinforcement system for establishing appropriate behaviours during the challengeable pandemic [44,56,51,54]

Providing resources and services and utilizing new technologies to provide support. 

The COVID-19 pandemic necessitated the use of technology to offer a broader range of care options and better address the diverse needs of children with DDs and their parents or caregivers, who often experienced heightened anxiety and frustration [1,47,28]. It is crucial for parents to maintain and strengthen social relationships while supporting their children’ mental health, and social connections. For instance, families spent more time together, and parents arranged online interactions with relatives to foster social engagement [1,16,17]. Financial resources provided to families played a vital role in facilitating access to in-home and community-based services, programs, and interventions [17,53,21, 50,82,83]. Support from extended family and community or organizations also proved invaluable [1,15,52]. Additionally, telehealth has emerged as an effective tool for education and therapy within autism communities. It can help address long waitlists for assessment and care, improve access to services in remote locations, and accommodate restricted service hours. However, parents and their children with DDs require adequate support to enhance accessibility and fully maximize its benefits [1,16,52]. 

Promoting self-efficacy and resilience

Parents who foster self-efficacy and resilience can help reduce children’s negative emotional responses [1,16,51,52,74,77,82]. Building resilience involves adopting strategies such as problem-focused coping, maintaining optimism and hope, fostering a sense of control, enhancing self-efficacy and acceptance. It also includes developing a sense of coherence, promoting positive family functioning, and enhancing care and psychosocial supports to mitigate the effects of prolonged isolation on children [1,48,51,74, 77]. 

Ensuing access to protective measures 

Parents trained their children with DDs to properly use preventative measures such as wearing masks, practicing social distancing, and self-isolating when necessary, and safely using hand sanitizer [1,16,9]. Parents reported that children with intellectual developmental delay highlighted the need for robust public health measures to mitigate the risk of transmission [52].

The findings revealed that the COVID-19 pandemic had a significant impact on parents and their children with developmental disabilities (DDs). Globally, both groups faced substantial challenges during this period, making them particularly vulnerable. Thematic analyses of parental stressors highlighted disruptions to children’s daily routines, concerns about the closures of schools, daycares, and social services [1,47,28,29,48,54,55,72,78,79,81], which aligned with recent studies [52,57;56;57]. Many parents had to adjust their work schedules to care for their children due to these closures [54] while also experiencing increased workloads from juggling multiple family roles [1,45,16]. The shutdown of schools and services deprived children of accessing the essential programs and resources, exacerbating parental stress [58,9,33,52,55]. Similarly to the findings of [6], parents also struggled with supporting their children’s transition to online learning, which added to the challenges of remote learning [1,44,45,56,80].

Parental stress during pandemic included drastically disturbed the routines of children with DDs, leading to increased stress, anxiety, aggression and behavioural issues in children, which heightened parental concerns [44,35,47,28,29,48,16,50,49,78], which was consistent with the studies by [59,60,17]; [50] reported many parents experienced reduced patience, and increased scolding and yelling at their children during COVID-19, which was consistent with the previous studies [61,62]. Moreover, parental stressors compassed concerns about their children’s health, mental health and well-being. A study [63,84] showed individuals with Down syndrome experienced a higher susceptibility to COVID-19 infection and more severe diseases, as some parents experienced depression, anxiety and psychological distress, consistent with findings from some recent studies [16,61,64,65]. Parents expressed significant concerns about their children’s socialization, lack of social networks and activities, excessive screen time and social isolation [1,44,35,47,48,51,72, 75,78,79,81,84], alongside financial difficulties and burdens [28,49,55], and limited access to educational resources and support services [45,47,15,51], especially low income families, and single parent have decreased likelihood of receiving services [46]. These challenges were consistent with findings from [66], and [6]. 

Parents and caregivers with DDs sought support from schools and teachers to access effective academic assistance for their children, as noted by [1,44,35,52,53]. In particular, parents played a vital role in supporting their children’s online learning [80]. They also reached out to various services, including educational, recreational, community-based programs, counselling interventions, telehealth, and rehabilitation services, to help improve their children’s emotional, social and behavioural adjustments during the COVID-19 pandemic [1,44,16,52,21, 74,77]. These efforts were necessitated by quarantine measures such as social distancing, lockdowns, and the closure or suspension of health and social services, schools, and daycares, which created unprecedented challenges for raising children with DDs [1,44,48,49,53], these aligned with some recent studies [6,58,57,65,67,21,56,32, 73]. 

Some parents created structured daily schedules to provide needed routines for their children with DDs, including physical activities and exercises, leisure activities to maintain children’s social connections with their friend and relatives [1,44,16,76], these findings were aligned with studies [19,9]. Additionally, parents implemented various effective coping strategies, such as reinforcement techniques, to enhance their children’ s social and behavioural skills and improve emotional regulation [56,54]. 

The results revealed that parents provided various forms of support, including financial assistance, verbal and non-verbal information, advice, tangible aid, emotional, and instrumental support. These supports significantly benefited both parents’ and children’s mental health and well-being. This finding aligns with previous studies [41,42], which showed that social support could mitigate stressors and enhance mental health and well-being in families with DDs before pandemic. Additionally, a prior study found that parents who received psychiatric help experienced lower levels of anxiety and employed more coping strategies, such as seeking support [68]. 

This systematic review, however, had some limitations. For instance, the electronic database searches were restricted to peer-reviewed academic articles and graduate school theses with full text available from 2020 to 2024, excluding gray literatures. The review was also limited to studies published in English, thereby excluding potentially relevant research in other languages. Moreover, the review did not focus on assessing the quality of the selected articles, as highlighted by [69]. Future study should prioritize quality assessments and emphasize robust methodological designs and practical implications [70,71]. To support the mental health and well-being of these parents, and caregivers, it is crucial to develop more supportive healthcare, social educational services, and community-based interventions, and in-home activities tailored for children with developmental disabilities.

This systematic review provided a comprehensive overview of the challenges and stressors faced by parents and caregivers of children with developmental disabilities (DDs) during the COVID-19 pandemic. It also highlights the effective coping strategies they implemented to navigate these difficulties. The findings underscore a significant increase in parental stress during the pandemic, emphasizing the urgent need for targeted attention and resilience-building initiatives. Enhanced mental health resources and support system for parents and caregivers are essential. Greater social support from family, friends, schools, and the broader community is critical to helping parents of children with DDs lead more balanced and adaptable lives during or after pandemic. Public health interventions should prioritize addressing parenting-specific stressors, developing context-specific policies and programs to support these families, and promoting effective coping strategies. These measures should consider the unique needs of these families raising children with DDs to mitigate the long-term impacts of the COVID-19 pandemic.