Disabilities | Free Full-Text | Examining Parental Stress and Autism in the Early Days of the Pandemic: A Mixed-Methods Study
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1. Introduction
The COVID-19 pandemic and stay-at-home mandates (i.e., lockdown) profoundly impacted families of children with autism [1] contributing to increased stress levels and a reduced ability to cope with adversity [2,3,4]. This emotional strain was further compounded by the fear of virus-related mortality, especially when considering the co-occurring medical needs of individuals with developmental disabilities, including autism [5]. Additionally, various economic challenges exacerbated the stressful situation, as pandemic-induced economic downturns affected families globally. These challenges manifested in widespread job losses and the loss of health insurance benefits, critically hindering many families’ ability to access essential support and medical care [6].
In light of these challenges, the stay-at-home mandates and social distancing measures not only upended daily schedules and routines but also had profound adverse effects on autistic children and their families [7,8,9]. The disruption of necessary therapies that are instrumental in enhancing communication skills and managing challenging behavior in children with autism, further complicated an already challenging time [7]. This global disruption extended to education and therapeutic services, which significantly impacted the autistic students’ ability to access necessary in-school and in-person therapeutic services in the United States (U.S., [10]). Caregivers of children with autism grappled with heightened concerns about service disruptions, financial challenges, and illness during the pandemic. The shift to online instruction and the sweeping school closures in the U.S. exacerbated the situation, and resulted in learning loss and increased distress, especially for children who had received more frequent and intensive services before the pandemic [11,12].
Furthermore, the social distancing measures altered the frequency, breadth of curriculum, and mode of delivering services for children with autism, including applied behavior analysis, speech pathology, and occupational therapies. Also, the abrupt shift to telepractice introduced unpredictability and disruptions in routines, further amplifying the adverse effects of the pandemic on the children and their families [13,14,15]. Therefore, the stay-at-home mandates and social distancing measures not only upended daily schedules and routines, profoundly affecting the wellbeing of autistic children and their families [2], but also disrupted the ability to access support programs, therapeutic services, and education in schools (e.g., [12]), which can typically help foster resilience for autistic children and their families.
1.1. Social Support and Resilience
Social support plays a vital role in promoting positive parental engagement and the overall well-being for both the child and their family [16]. Moreover nurturing relationships within supportive environments can significantly contribute to the positive development of children with autism and other disabilities [17]. By harnessing community resources, these supportive environments can be further strengthened to foster family resilience [18].
Resilience, defined as the ability to thrive in the face of adversity [19], is evident when caregivers experience a sense of control, feelings of self-efficacy, social support, and positive family interactions [20,21]. While research indicates that caregivers of children with autism often experience higher stress levels compared to caregivers of children with other developmental disabilities or no disabilities [22,23], there’s evidence of a negative association between family resilience and parenting stress in families of children with autism [24,25]. Studies have shown that parental resilience within families with children with autism can indeed be high (e.g., [26]). Therefore, prioritizing the promotion of family resilience and adopting a strength-based approach (vs. a deficit-based approach) is important for both research and practice. However, it’s essential to recognize that factors that could influence resilience levels can vary significantly across studies and countries [26,27,28]. This underscores the significance of considering diverse contexts and individual family dynamics when addressing resilience in families affected by autism.
At the onset of the COVID-19 pandemic in March 2020 [29], many individuals with autism and their families demonstrated resilience (e.g., [21]). Resilience in caregiving involves recovering from stress and adapting to the care situation [30]. Remarkably, even cultivating a modest level of resilience appeared to serve as a protective factor against anxiety and depression among caregivers of autistic children during the pandemic [31,32]. However, the intermittent inaccessibility of essential support systems due to social distancing and stay-at-home mandates posed a critical challenge for families of autistic children. This loss of access to social connection was particularly significant because poor social connections are mostly linked to poorer well-being for both caregivers and their children with autism [33].
1.2. Stress Mitigation Strategies during the Pandemic
To alleviate caregiver stress, implementing interventions that facilitate the learning and generalization of skills for autistic children within their natural environments can be very helpful [34,35]. However, the national emergency declaration in the U.S. in March 2020 compelled service providers and school districts to close down and reassess their service delivery models [36] further limiting access to needed resources. Respite care, including in-home care, community-based programs, or residential facilities, although often a rare resource was even less available during stay-at-home mandates, significantly contributing to increased stress for caregivers of individuals with autism [37]. Additionally, tensions arose from the novel demands of working from home, homeschooling, the need for enhanced sanitization, unemployment, and political unrest [14].
Moreover, families encountered challenges in accessing the necessary knowledge to effectively support their child with autism and manage stress. This acquisition of knowledge and training can lead to a shift in caregivers’ perceptions regarding their capability to assist their children with autism. Such shifts have been associated with increased self-efficacy, decreased stress levels, and heightened motivation to implement interventions that promote skill development and generalization across various settings [38]. While some families of children with disabilities were able to cultivate self-efficacy and find meaning during the pandemic, which helped strengthen their resilience and maintain their mental well-being [39], others, particularly those with autistic children, faced a prevailing sense of helplessness, especially in the early stages of the pandemic [40].
1.3. Purpose and Research Questions
The abrupt suspension of in-person education, extracurricular activities, social interactions, and routine healthcare during the COVID-19 pandemic significantly impacted the well-being and mental health of families with autistic children [1,7,8,13]. Considering the known bi-directional relation between parental stress and challenging behavior [41,42], caregivers, especially those of autistic children who exhibit challenging behavior, were more likely to have experienced intensified or altered parent-child interactions during stay-at-home mandates.
This research, part of a broader investigation, aimed to understand the challenges faced by families with young autistic children during the early stages of stay-at-home mandates. Aligned with the goal of producing context-specific evidence [43], this study sought to create an understanding that could inform state legislatures and local service providers when they address the needs, wants, and beneficial strategies that can promote the well-being of families with autistic children in future emergencies. This study centered on two key research questions: (1) How did the loss of services and caregivers’ perception of their child’s needs impact their stress levels? and (2) What were the caregivers’ needs and obstacles in accessing stress-alleviating support?
4. Discussion
As part of a broader initiative to explore the parenting experience during the early stages of the stay-at-home mandate in Illinois, this convergent parallel mixed-methods study investigated how parental perceptions, loss of support services, increased time demands, and isolation influenced stress levels among caregivers of young children with autism. Our findings unravel a complex network of interconnected relations, drawing insights from three sources: PSI-4-SF and its subscales, caregiver questionnaires, and semi-structured interviews. TS scores served as the central node in this study’s network of variables, with caregivers’ responses to questions about their child’s autonomy and safety, along with Difficult Child (DC) subscale scores, strongly predicting TS scores. Particularly, concerns about the child’s safety and ability to be left unattended were significant factors.
Heightened concerns about injury and the stress of providing constant supervision for autistic children may stem from various factors. By experiencing routine disruptions, fears of illness, and economic uncertainties [9,51,52], caregivers of autistic children may have felt the need to be more hypervigilant to reduce the need to seek medical attention during the pandemic. Also, autistic children frequently engage in risk-taking behaviors which can lead to more frequent and severe injuries. The severity of autism symptoms was found to positively correlate with risk-taking behavior and the frequency of injury [53]. This suggests that prevention and treatment of childhood injury may require more intensive services and supervision, which were highly reduced during the pandemic and added stressors for the caregivers (e.g., [14,40]). Social distancing measures have led to a rise in challenging behavior among autistic children [1,7], potentially increasing the risk of injury. Injuries, in turn, may necessitate hospitalization, posing a heightened risk of virus exposure for autistic children who are more vulnerable due to frequently occurring co-occurring medical conditions [5,54,55]. Furthermore, adding to caregivers’ worries about injuries and safety, specifically the preference to avoid the necessity of medical interventions during the pandemic may have been exacerbated by suboptimal past experiences with healthcare institutions which are traditionally ill-prepared to address their children’s unique needs in previous medical crises [56]. This convergence of risk-taking behavior, injury prevalence, and pandemic-related challenges emphasizes the urgent need for targeted interventions and support systems for children with autism and their caregivers, which were voiced as contributing factors to caregiver stress when they expressed their needs and wishes in the semi-structured interviews.
The findings from this study indicated that there is a significant link between caregivers’ confidence in the child’s ability to remain safe without supervision and TS which emphasizes the stress associated with perceiving a child with autism as difficult to parent (DC). This, in turn, can create a feedback loop where high caregiver stress correlate with increased challenging behaviors [57] which can be exacerbated by loss of support due to stay-at-home mandates, limited opportunities for self-care, and diminished access to social support [14] which can detrimentally affect their effectiveness as caregivers [58].
Surprisingly, our data analysis revealed no significant impact on Total Stress (TS) scores for caregivers whose children lost more than 20 h of service per week due to the stay-at-home mandate. However, a robust and statistically significant association emerged between TS scores and children losing 5–10 h of services weekly during the shutdown. Although this finding is intriguing, we lack sufficient information to pinpoint the significant predictors influencing this variable, further investigation is warranted to explore additional variables that may contribute to this finding such as family dynamics, child characteristics, caregivers’ prior knowledge, and access to parental training opportunities.
In grappling with the challenges posed by their child’s challenging behavior, the stress scores related to PDCI subscale reflected the caregiver’s anxiety about how they perceive their child’s ability to have impulse and emotional control, and overall behavior regulation. This correlation aligns with previous research conducted during the COVID-19 pandemic, which identified widespread feelings of helplessness among caregivers of autistic children [40]. Unfortunately, such sentiments can potentially hinder the development of family resilience, which is contingent upon caregivers fostering self-efficacy, positive social interactions, and a general sense of control over their lives, e.g., [59].
Moreover, the well-documented bidirectional relation between caregiver stress and challenging behavior in children with autism [41,42] reinforces our findings. The Difficult Child (DC) subscale emerged as one of the top contributors to parental Total Stress (TS), emphasizing the intricate connections between caregiver stress and perceptions related to their child’s challenging behavior. These insights underscore the complex interplay between caregiver stress, perceptions, and the unique challenges faced during the pandemic, as highlighted by the PCDI and DC subscale scores.
Additionally, the insights retrieved from the caregiver questionnaire provide contextual information on how the caregiver’s perception of their role as a parent and of their child’s independence heavily relates to all stress subscales. A way to enhance this perception is by increasing both the child’s and the caregiver’s self-efficacy. Caregivers pointedly asked for support, guidance, and coaching on how to respond to their child’s needs during the lockdown, which are, incidentally, the main ingredients in building family resilience [20,21]. Caregivers’ perception of their role as caregivers and their child’s positive development can contribute to building resilience, acting as an antidote to stress [24,25]. To thrive in the face of adversity, families of children with autism require specific skills and support, including the ability to see their child learn and generalize skills in natural environments [34,35]. Unfortunately, this was not available to the participants in this study. As a result, caregivers listed their need for support, coaching, respite care, and advice on specific topics that pertain to their families and their child’s specific needs.
Finally, to prioritize the well-being of children with autism and their families, creating sustainable and practical support initiatives, is essential for systematically building resilience. For instance, respite care, as highlighted by Manning et al. [12] and requested by the caregivers in this study, can positively impact the mental health and well-being of caregivers of children with autism. Considering respite care as an essential service can provide caregivers with the space for self-care and time to manage other life demands [60].
4.1. Limitations
This study acknowledges several notable limitations. While purposive sampling was employed, concerns arose regarding the generalizability of findings due to the restricted sample size and regional focus. Despite utilizing interviews to contextualize self-reported stress responses, the reliance on self-report tools and interviews introduces susceptibility to response and interpretation biases. When individuals self-report on stress levels, various factors, including self-perception, confidence, personal biases, and the accuracy of memory recall, can influence the information provided [61]. To bolster the trustworthiness and credibility of our findings, we incorporated methodological strengths, such as triangulation, member checks [43], and validation through existing research [40].
Additionally, the impact of the lockdown itself imposed limitations on accessing a larger pool of participants. Caregivers faced resource constraints that affected our sampling, as the stay-at-home mandate influenced their capacity to allocate time for participation and their ability to maintain reliable internet connections for video interviews and completing the measures informing our study. The limited sampling in Illinois and other social factors may have influenced the depth of responses [62]. The consequences of stay-at-home mandates during the pandemic might extend beyond its duration, depending on the family’s existing characteristics and their levels of financial, social, and emotional support [63]. The increased demand for caregivers’ resources and their reduced capacity for self-care activities may adversely affect both their effectiveness as caregivers and their perception of their ability to respond to their child’s needs [58].
Furthermore, this study spanned eight weeks during the early stages of the stay-at-home mandate in Illinois, potentially leading to varying perspectives among early and later interviewees. It is important to recognize this temporal constraint and how it may affect the caregivers’ responses, particularly acknowledging that people may have experienced job losses and reduced access to healthcare services at a disparate rate based on ethnicity, e.g., [64], and socioeconomic status during that period. This disparity is especially pertinent for historically marginalized groups who, even before the pandemic, faced unequal access to timely diagnoses and interventions [65,66]. The COVID-19 pandemic has exacerbated these existing inequalities, significantly impacting access to healthcare, academic resources, and social services, particularly for these communities [67]. Further research is warranted to comprehensively understand the impact of the pandemic on caregivers of children with autism, specifically those belonging to historically marginalized groups. Apart from geographical and temporal constraints, social factors, including ethnic background, the presence of others during the interview, and the established rapport with the interviewer, could have influenced the extent and depth of participant responses to specific questions [68]. It is important to recognize and acknowledge these influences on this study’s outcomes and offer room for future insights to shed light on these influences.
4.2. Implications
To alleviate parental stress, enhance self-efficacy, and foster resilience, comprehensive and innovative approaches are necessary. The findings from our study underscore the importance of proactive measures and continuous support for caregivers of children with autism. In addition to offering actionable insights for immediate support for families during times of crisis, creating a long-term plan to sustain community-based initiatives, respite care services, and coaching programs can support family resilience and future positive outcomes for the child and their family, e.g., [20,59]. Additionally, establishing more inclusive cultures in medical institutions for patients with diverse communication needs aligns with caregivers’ expressed wishes for expanded support. This approach can help build reliable community support systems that cultivate satisfaction and minimize adverse effects on the family [18,32]. Moreover, improving telepractice services [69] and providing tailored online instructional materials [70,71] offer effective and feasible ways to provide parental training and support.
Looking ahead, future research should focus on creating feasible and proactive systems to engage families of young children with autism, where they can foster reliable connections within their communities and where they consistently rely on the support of their services providers and educational. Research, e.g., [69,72,73] shows that using affordable online methods effectively provides training and support to caregivers. Encouraging initiatives that advocate for therapeutic services and educational support providers to plan ahead and adopt targeted and responsive online practices can empower caregivers to acquire sustainable strategies that extend and persist beyond crisis situations.
The challenges and stress contributing factors in this study reveal issues related to availability, appropriateness, accessibility, and sufficiency of support services during the rapid transition to remote delivery. To leverage existing infrastructure, researchers can explore effective virtual training and support methods for caregivers. This includes establishing regular, sustained, and frequent online visits from community members, support service providers and educational institutions to aid them build their sense of self-efficacy and resilience among the caregivers of autistic children. These strategic interventions, based on our findings, are needed not just for relieving immediate stress but also for protecting caregivers from the potential impact of future challenges or disasters.
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