Autism spectrum disorder (ASD) is a complex, heterogeneous neurodevelopmental disorder that can be diagnosed as early as 18 months of age (Levy et al., 2010; van 't et al., 20211). The percentage of children with ASD has steadily increased, with a global prevalence estimated to range from 0.02 % to 3.66 % of the population (Alrehaili et al., 2023). Caregiver burden can be defined as family distress caused by caregiving, which includes a decreased quality of life, impacts on work and social life, and the development of psychological disorders (Yıldız et al., 2021).
Children with ASD commonly exhibit characteristics of stereotyped and repetitive behaviors, along with significant social communication deficits such as difficulties in developing and maintaining relationships as well as challenges in expressive and receptive communication (Ostrowski et al., 2024). These challenges associated with ASD necessitate additional levels of care and assistance from caregivers, diverting their attention and time from dealing with other people and issues (Cheatham & Fernando, 2022). Therefore, caregiving for children with ASD can be extremely demanding and caregiver burden involves distressing concepts such as shame, embarrassment, remorse, and self-blame in addition to the emotional, psychological, physical, and financial impacts (Patel et al., 2022). Caregivers may experience elevated stress as a result of caregiver burden, causing them to be at an increased risk of psychiatric illnesses (Naheed et al., 2020) and poorer family functioning (Turnage & Conner, 2022). This is notably true in China, which lacks a developed social security or welfare system. Studies suggest that having more than one child with ASD can lead to lower life satisfaction, a lower sense of well-being, more negative emotions, and higher incidents of depression (Demšar & Bakracevic, 2023; Lanyi et al., 2022). Families of children with ASD experience higher levels of stress and burden than families of children with other disorders or those in the general population (Chua et al., 2023). However, despite these issues, studies have found that the majority of primary caregivers report feeling supported and fulfilled through caring for their children with ASD (Ten Hoopen et al., 2020). Some families may positively adapt to the adversities in raising a child with ASD and even gain strength and growth in highly adverse circumstances (Yaacob et al., 2022).
In response to stressors, families, which are interconnected and dynamic systems, have the capacity to exhibit both maladaptation and resilience (Walsh, 2016). Over time, scholars researching caregiver burden have shifted their focus from models based only on family crises to those emphasizing adaptation (Hayes et al., 2023). Scholars have sought to investigate the characteristics, dimensions, and attributes of families that may contribute to their resilience in the face of disruptions and challenges during crises (Demircioğlu & Demir, 2025; Walsh, 2021), thereby advancing the understanding of family resilience as both an independent construct and a protective mechanism against adversity. Resilience can act as a protective factor in crises caused by the diagnosis, treatment, and rehabilitation of individuals with ASD (Ghanouni & Hood, 2021). Theoretically, strengthening family resilience can improve the psychological and physical health of the family members of individuals with ASD as well as the quality of life of the family (Gunty, 2021). Growing evidence has shown that families of children with ASD exhibit low-to-moderate levels of family resilience (Al-Jadiri et al., 2021; Hayes et al., 2023), as demonstrated by their positive contributions to the family's well-being (Grigoropoulos, 2022). Previous studies have revealed that caregiver burden negatively impacts family resilience (Shao et al., 2024; Zhang et al., 2023). Further, when caregivers report lower stress levels, families of children with ASD have a greater probability of developing higher family resilience (Hayes et al., 2023). However, it remains unclear whether caregiver burden has a direct effect on family resilience or if other factors function as mediators in the link between stress and family resilience.
According to the ABCX Model of Family Adjustment and Adaptation (McCubbin & Patterson, 1983), when a family is faced with an accumulation of stressors, family resources (e.g., social support) and individual coping (e.g., positive cognition) may also contribute to making vulnerable families progress to adaptation. Social support is defined as emotional, informational, or material assistance provided by professional or non-professional organizations and consists of three aspects: objective support, subjective support, and the individual's utilization of that support (Gottlieb & Bergen, 2010). McCubbin's family resilience model emphasizes the important role of social support in facilitating family resilience by providing a supportive environment (McCubbin & McCubbin, 1996), which has since been confirmed in later studies (Zauszniewski et al., 2010). Furthermore, a high degree of caregiving burden is correlated with a reduction in social support (Guan et al., 2023; Zhang et al., 2024). Caregivers of children with ASD report significantly lower levels of social support than caregivers of unaffected families because of their higher caregiver burden (Bishop-Fitzpatrick et al., 2018). Heavy caregiving burden limits family caregivers' ability to maintain social networks and may lead to the avoidance of social interactions, resulting in reduced social support (Guan et al., 2023). Social support has been found to play a mediating role among parents of children with ASD in the relationships among caregiver burden, quality of life (Marsack & Samuel, 2017), life satisfaction (Lu et al., 2018), and individual resilience (Zhao et al., 2021). However, empirical evidence for the mediating effect of social support on the relationship between caregiver burden and family resilience is lacking.
Illness cognition, which includes positive and negative cognitions, refers to an individual's persistent perception, interpretation, and understanding of a disease and its treatment (Bilani et al., 2019). Positive cognition encompasses positive thoughts about illness, including acceptance, which reduces its negative meaning, and perceived benefits, which add positive meanings to the disease (Hamama-Raz et al., 2023). While ASD is classified as a diagnosis rather than an illness, some researchers have considered ASD as a chronic and lifelong disease (Mire et al., 2018). Positive cognition reflects optimistic attitudes that may function as protective variables (Ghanouni & Hood, 2021). The ABCX model of Family Adjustment and Adaptation (McCubbin & Patterson, 1983) proposes that families may expand their resources when encountering accumulated stressors, which, in turn, may influence the meanings they assign to their situation and their adaptation. A few studies have confirmed that social support increases parents' positive cognition of the disease (Slattery et al., 2017), which, in turn, decreases psychological stress responses. Although the mediating effects of positive cognition on the relationship between caregiver burden and individual resilience have been examined (Zauszniewski et al., 2010), to the best of our knowledge, no existing research has demonstrated the role of positive cognition as a mediator in the relationship between caregiver burden and family resilience. Hence, investigating the relationships among caregiver burden, social support, positive cognition, and family resilience can enhance our understanding of the determinants of family resilience, thereby informing the development of targeted interventions to improve family well-being.
This study aimed to assess the correlations among caregiver burden, social support, positive cognition, and family resilience and to determine whether social support and positive cognition mediate the relationship between caregiver burden and family resilience in families with ASD; this could guide assistance development to help caregivers of children with ASD reduce the negative impact of burden on family resilience. Based on the previous literature and ABCX Model of Family Adjustment and Adaptation (McCubbin & Patterson, 1983), this study proposes three hypotheses. First, caregiver burden directly affects family resilience. Second, social support and positive cognition both mediate the relationship between caregiver burden and family resilience. Third, caregiver burden affects family resilience through the chain mediating effects of social support and positive cognition. Fig. 1 illustrates the hypothesized model.
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