Linking Healthcare, Family, and Work Systems: The Roles of Family-Centered Care, Family Resilience, and Caregiving-to-Work Conflict in Psychological Well-Being Among Parents of Children with Autism Spectrum Disorder

Background and Purpose: Healthcare, family, and work systems are the primary living environments of parents of children with autism spectrum disorder (ASD). While prior research has examined the negative impacts of caregiving for children with ASD on parents, less is known about how resources from healthcare and family systems can be leveraged to reduce caregiving-to-work conflict and improve parents’ psychological well-being. Family-centered care is an approach that healthcare providers collaborate with patients and families to design and deliver services. Similarly, family resilience represents a family’s capacity to adapt to adversities and maintain functioning when raising a child with ASD. Guided by the conservation of resources theory, this study adopted a strengths-based perspective to explore how resources from the healthcare and family systems can benefit parent caregivers’ work-family balance and mental health. Specifically, following research questions were addressed among parents of children with ASD: (1) What are the associations between family-centered care and parental psychological well-being, as well as family resilience and parental psychological well-being? (2) Does caregiving-to-work conflict mediate these associations?

Methods: This study utilized data from the 2023 National Survey of Children’s Health (NSCH), a nationally representative survey of children aged 0 to 17 in the United States. The analytic sample included parents whose child(ren) had a medical diagnosis of ASD and had received healthcare services within the past 12 months (N = 1,563). Descriptive statistics, bivariate correlations, and path analysis via structural equation modeling (SEM) were conducted to examine the associations among key variables and to test the mediating role of caregiving-to-work conflict. All regression models controlled for sociodemographic characteristics of both parents and children.

Results: Most parents of children with ASD in this study were female, employed, married, and well-educated. Their children were predominantly male and White, with the majority diagnosed with mild to moderate severity of ASD at approximately five years of age. The SEM path analysis indicated that family-centered care (b = .10, β = .07, p < .01) and family resilience (b = .51, β = .33, p < .001) were positively associated with parental psychological well-being directly. Additionally, family-centered care was negatively associated with caregiving-to-work conflict (b = -.16, β = -.10, p < .001), which, in turn, was negatively associated with psychological well-being (b = -.08, β = -.07, p < .01). However, the mediating role of caregiving-to-work conflict between family resilience and psychological well-being was not statistically significant.

Conclusions and Implications: Parents of children with ASD require support from multiple systems. Both family-centered care and family resilience can benefit parents’ psychological well-being, by directly enhancing their access to healthcare and family resources. Meanwhile, family-centered care may indirectly improve parents’ psychological well-being by reducing caregiving-to-work conflict. Overall, family resilience may be more beneficial for psychological well-being than family-centered care. Our findings highlight the need for family navigation programs to support families throughout the diagnosis and treatment process for children with ASD. Future research should explore how factors such as Medicaid utilization, family structure, and work-family enrichment contribute to parents’ mental health.