Fighting the waves; Covid-19 family life interference in a neurodevelopmental disorder-caregiver population

The current COVID-19 pandemic has interfered with the family lives of informal caregivers of children across the world, threatening their well-being [1]. A recent report (N = 2,500) on informal caregivers in 16 countries revealed that 90.6% of the respondents were concerned about how their caring role and their personal and caring circumstances were affected by the COVID-19 pandemic. The report shows how the COVID-19 pandemic is interfering with the carer´s life and negatively impacting their quality of life (78.9%) and mental health (66.5%) [2]. However, for some families, the interference caused by the COVID -19 pandemic is more extensive and may have different consequences for them than it does for the majority of the population [3]. Measures to reduce contact between individuals, such as the closure of educational and childcare establishments affect the daily routines and roles of families and may result in considerable psychosocial costs [4]. Psychosocial impacts related to the reduction of contact between individuals [5] have extended beyond disease resolution in past outbreaks [6]. Findings from a recent scoping review [7] including 29 articles show that isolation and home quarantine interfere with the family life of families with children with neurodevelopmental disorders (NDDs) due to routine disruption resulting in increased parental stress and threaten their wellbeing. Interference occurs where there is a role overload and role conflict, a situation in which an individual’s total role obligations are overly demanding, and the adequate performance of one role endanger the adequate performance of other roles [8], and newer studies indicate that families and parents are disproportionately vulnerable [5, 7].

Families of children with NDDs such as autism spectrum disorder (ASD) or attention-deficit/hyperactivity disorder (ADHD) and Tourette’s syndrome are at particular risk during the COVID-19 pandemic [9]. In Norway, the estimated percentage of children suffering from one or more NDDs is > 5% [10], assuming each private household have one child with NDD, at a minimum it could represent as many as 37,762 private households [11]. A recent Norwegian report on caregivers (National caregiver survey) [12] finds that families located in urban areas, which were subjected to the harshest restrictions related to the pandemic, experienced a higher level of COVID-19 interference, and a heavier caregiver burden than families without children with health challenges. The caregivers who live in more rural areas reported to a greater extent than caregivers in the more urban areas that they lack health service offers particularly for them. The report also showed that even though they are caregivers of children who to the greatest extent utilize service offerings and support schemes, this caregiver group experience low availability of such services [12]. NDDs are a group of disorders affecting the development and function of the brain [13]. Individuals with NDDs are particularly vulnerable to the distress induced by the COVID-19 pandemic infection control and prevention measures, and to stress caused by the unpredictability of the situation [14, 15]. As a result, they may display increased behavioural, mental, and physical problems [14, 16]. The immediate stressful impact and the unpredictability associated with the first period of the pandemic may have caused difficulty with executive function skills in individuals with ADHD [17] and ASD [14], due to the challenges they face with cognitive flexibility and inhibitory control. Executive functions are an umbrella term for mental processes which are important in every aspect of an individual’s life, and consist of three core functions: inhibitory control, work memory, and cognitive flexibility. Dysfunction in one or more of these functions will lead to difficulties in taking care of one's health [18]. NDDs such as ADHD and ASD are characterized by executive dysfunction [19], and are associated with reduced mental and physical health, quality of life, school/job performances, and marital or -family functioning [18].

ASD and ADHD [20] are associated with co-morbidities such as behavioural problems, anxiety, or depression. In addition, children diagnosed with ADHD and ASD are particularly sensitive to changes in routine and restrictions to activity and are therefore particularly vulnerable during the COVID-19 pandemic because of the associated lockdowns of kindergarten and school. Parents of children with NDDs often report an above-average rate of mental health issues [21‐23] and the involvement of hereditary factors in certain NDDs (e.g., ADHD) may suggest that some caregivers have the diagnosis themselves [24]. This implies that these individuals may experience increased stress and caregiver burden. Parenting a child with an NDD was associated with an increased level of caregiver burden even before the global COVID-19 pandemic [23, 25, 26]. Results from a European study (N = 2,326 caregivers) demonstrated strains related to work, social activity, family life, and increased parental worry and stress among caregivers of children and adolescents with ADHD [27]. Similar findings were reported for caregivers of children and adolescents with ASD in a separate study [22]. Conflict levels are higher in families of children with ADHD [21] and ASD [22] when compared with control families, and parents in these families often report an unmet need for respite care, caregiving support, and accessible childcare [25]. Considering the findings of previous research on these stressors on informal caregivers [1], it is reasonable to expect an even higher level of burden during the current COVID-19 pandemic as a result of increased caregiver responsibilities.

It is reasonable to assume that during lockdowns of school, kindergarten, and other activities, children with NDD are subject to an increased risk that their needs related to school and psychosocial functioning—which would normally be handled by the kindergarten, school, or another public service such as respite care—will not be met [28]. As a result, the informal caregivers of these children were presumably forced into new and different roles to meet their child’s needs, while also experiencing role changes in their professional work life (e.g., working from home, temporarily being laid off, or losing their job) [3]. It is conceivable that this may lead to a role overload, which could lead to conflict (i.e., COVID-19 family life interference). We understand the COVID-19 family life interference as a result of the routine disruption and increased external stress on the caregivers and their children caused by the isolation and home quarantine due to the COVID-19 pandemic [29], thus we hypothesize that the COVID-19 pandemic will interfere with the family life of NDD caregivers and their children, as an external source of family stress.

To our knowledge, there is currently no research available on family life interference caused by the COVID-19 pandemic among the NDD caregiver population and there is a need for more research on the subject of family life in families with children with NDD during the COVID-19 pandemic [7, 30]. Together with representatives from this caregiver population we aim to explore the interference associated with normal family life caused by the COVID-19 pandemic, in an NDD caregiver population during the first lockdown in Norway. Our specific objectives include: 1) to describe COVID-19 related interference with normal family life and the impact on children with NDDs, and 2) to explore the associations between family characteristics, characteristics of the child, and COVID-19 related family life interference.

The study sample (N = 1,186) is comprised of caregivers of children with NDD from all 11 counties in Norway (Table 2). Regarding socioeconomic consequences, 53% (n = 628) of the caregivers worked from a home office, 85% (n = 1,002) reported that they did not lose any income, and 75% (n = 892) reported no concerns about the economy during the Covid-19 lockdown in spring 2020. Fifty-seven percent (n = 673) of the caregivers had to stay at home in order to help their child while the school was closed, and 70% (n = 831) reported having more than one child in school or kindergarten at home, which had to stay at home. The majority (65%, n = 774) recounted that the school provided them with equipment and aids to enable the child to follow the home-schooling program. Contrastingly, the majority of the caregivers (80%, n = 945) did not receive any guidance (e.g., oral or written) during this lockdown to help their child with the home-schooling, and 83% (n = 986) reported that they did not get any support or guidance from the school, the Child and Adolescents Mental Health Services (CAMHS) or other public agencies to handle the everyday life during the lockdown. Forty-five percent (n = 533) of the children reported anxiety associated with the closure of the school in this period, and only 31% (n = 366) of the children had a respite care scheme (e.g., respite care in the home or at an institution). Increased conflicts at home due to the closure of the school were reported for 56% (n = 665) of the caregivers. Fifty-one percent (n = 488) of the caregivers reported that the Covid-19 lockdown and isolation affected their family life in a negative way.

The purpose of the present study was to explore the interference associated with family life and the COVID-19 pandemic in an NDD caregiver population during the first social lockdown in Norway.

The results indicate that the COVID-19 pandemic induced a shift in everyday family life, which was characterized by abruptions, changes, disruptions, and ongoing insecurity for approximately one-third of the sample. Most of the sample did not receive any guidance on how to help their children with home-schooling, nor did they receive any guidance or support on how to handle everyday life during the lockdown. This is a concern since distorted caring positions exhaust and drain the family relationship [3, 35] Considering the challenges regarding executive dysfunction in children with NDDs [14, 17], higher rates of mental health issues [36] and possible role overload [3] among their caregivers, our findings regarding high rates of reported anxiety in the children, and increased conflict at home might reflect external family stress caused interference with the family life resulting from the COVID-19 pandemic. Recently published studies reported similar findings regarding the psychological impact of COVID-19 on family life in an NDD caregiver population as a result of the lockdown, isolation, and changes in daily routines [3, 5, 7, 37].

The results from the logistic regression analysis presented several concerning results indicating the vulnerability of the NDD-caregiver population. Both anxiety- and conflict level during the lockdown were important concerns among our user representatives and was included in the questionnaire to capture key facets of the caregiver experience. COVID-19 related family life interference was associated with approximately nineteen times greater risk for increased conflict at home, and even a minor increase in conflict at home was associated with five times increased risk compared with those reporting no conflict. Considering that the COVID-19 pandemic increases familial conflicts such as sibling conflicts, especially in families with children suffering from special educational needs and disabilities and how these increased conflicts increase parental distress [37] our findings are even more concerning. Almost half the children reacted with anxiety to the changes induced by the social lockdown, which increased the risk of family interference by two times compared with caregivers of children without anxiety. Considering the extent to which the closure of educational and childcare establishments as a result of the COVID-19 pandemic interferes with the daily lives, tasks, and routines of children and caregivers with NDD and their families [14, 15, 37], these findings may illustrate the ramification of living under the strict restrictions associated with the pandemic for vulnerable groups such as the NDD caregiver population. Our findings suggest that both children and caregivers, experienced challenges in adapting to a new, isolated, digital, and unpredictable everyday life in which their roles and expectations have changed. This may be due to executive dysfunctions in cognitive flexibility and inhibitory control (i.e., appropriately adjusting behaviour and cognition to adequately meet new demands, roles, or priorities within a changing environment, such as the current COVID-19 pandemic) [18, 19]. In addition, one must keep in mind that hereditary factors reflect research on NDDs [24], thus, it is conceivable that some caregivers participating in the study might have a NDD themselves. This potentially complicates the situation further and increases their need for support and guidance. The findings suggest that COVID-19 interferes with family life by causing uncertainty about what the future brings, forcing a transition to digital platforms at work and at school, and exposing people to divergent information and that this has led to increased unrest and greater difficulties with executive functions among people with NDDs. For caregivers, the results suggest an increased threat to their mental health, as a result of increased caregiver burden and familial stress due to COVID-19 family life interference, along with a threat to their resilience in dealing with the consequences of the COVID-19 pandemic and the negative impact it has had on their mental and physical well-being [5, 7].

Overall, research on stress in caregivers of children with NDDs has indicated that raising children with NDDs is especially stressful and that the current COVID-19 pandemic might increase stress further [3, 7]. Considering that exposure to stressful life events, family adversity, and ineffective parenting might contribute to chronic exacerbation of the symptoms of NDDs such as ADHD [17], which in turn might further increase the caregiver burden and negative effects on the family life, a continuing negative spiral is probable. The results of the present study might illustrate the NDD caregivers’ need for guidance and support during future emergencies (e.g., pandemics) to meet the needs of their children, mastering their new roles, and reduce interference with family life resulting from the emergency. A recent qualitative study, involving 15 respondents [38] found that new interpretations and an increased understanding of parents’ experiences are required to support parents who care for children with complex needs. Understanding parents’ experiences could reduce social isolation and exclusion and help to guide appropriate and supportive practices and services within and across medical, social, and family systems. Parents’ experience of managing complexities of care within health, social, and family systems remains particularly under-researched. Caregivers´ need for shared strategies to cope with and endure external stressors, such as the COVID-19 family life interference is important [3]. Based on our findings it is conceivable that the lack of support and guidance from schools, the Child, and Adolescents Mental Health Services (CAMHS), or other public agencies threatens the family life of caregivers of children with NDD by not providing them with the necessary tools and coping strategies [3, 7, 39]. Consistently with the Norwegian national caregiver survey [12] our findings seem to indicate that residing in more rural counties (i.e., Vestfold, and Telemark, and Rogaland) might decrease the risk for COVID-19 family life interference. Differences between caregivers in rural and urban settings may be explained by the fact that more rural counties are more likely to have local services offer particularly aimed to support the caregivers. However, the association was not consistent across the different counties. While a recently published scoping review [7] concluded that there is a lack of evidence-based studies and articles on this population, it also presented parenting advice for families with children with NDDs during the pandemic highlighting the importance of maintaining the child´s therapy and special educational routines, creating structured daily schedule with child-appropriate activities, and to keep in contact with children´ teachers and therapists [7]. However, further research is needed to explore the need for support, guidance, and coping strategies among caregivers of children with NDD and the associations of these needs with caregiver burden and family stress.

“It is easy to tear down but takes a long time to rebuild” was a comment made by one of the team’s user representatives, with reference to the stable environment children with NDDs and their caregivers rely on. Both the children and the caregivers should be considered a group that is at risk and in need of continuous support and guidance as a family, especially during stressful life events such as the current COVID-19 pandemic.

Our study suggests that more information about stressful life event impacts should be provided to healthcare providers, social professionals, peers, people with NDDs, and caregivers of people with NDDs. In addition, there should be a focus on the identification of particularly vulnerable children and families, such as the population in this study, when preparing for future challenges. It is our hope that this study will inspire further exploration of this subject in collaboration with user representatives, so when the next pandemic or similar stressful life event occurs, groups at risk, such as people with NDD and their caregivers, are better equipped to face rather than fight the waves.