A Mixed-Methods Study of Psychosocial Factors and Mental Health Outcomes In Caregivers of Transition-Aged Youth with Developmental Disabilities

Background and Purpose:

Caregivers of transition-aged youth (TAY) with autism spectrum disorder (ASD) and/or intellectual disabilities (ID) experience disproportionately high rates of depression, anxiety, and stress. While prior studies have explored risk factors influencing caregiver mental health in silos, there is a critical need for a comprehensive understanding of how psychosocial stressors simultaneously and experientially erode caregiver mental health. Guided by the Stress Process Model, this explanatory sequential mixed-methods study examined psychosocial predictors of caregiver mental health outcomes quantitatively and used qualitative interviews to explain the lived mechanisms underlying those findings. This study aimed to identify and examine the simultaneous effects of multiple psychosocial factors on mental health outcomes (depression, anxiety, and stress) among caregivers of youth with developmental disabilities, to inform targeted intervention development.

Methods:

Quantitative data from 192 parents of youth with ASD and/or ID were analyzed using hierarchical multiple regression analysis. Dependent variables included depression, anxiety, and stress of the caregivers using the DASS-21. Key predictors, also examined using validated instruments, included coping strategies (problem and emotion-focused, and avoidant coping), social support, parent-child relationship quality, parenting self-efficacy, child communication skills, discrimination, disability stigma, and marital conflict. Analyses controlled for race/ethnicity, gender, and income. The qualitative strand included 30 caregivers from the same study who participated in semi-structured interviews. Hybrid thematic analysis combined deductive Stress Process Model-guided codes with inductive codes to identify themes explaining quantitative pathways.

Results:

Quantitative models demonstrated excellent predictive power, explaining substantial variance in caregiver mental health outcomes: depression (R² = .55, F = 22.12, p < .001), anxiety (R² = .42, F = 12.88, p < .001), and stress (R² = .49, F = 16.85, p < .001). Avoidant coping was the dominant predictor across all three outcomes (depression β=.57; anxiety β=.54; stress β=.43, all p<.001). Parent-child relationship quality was protective against depression (β=-.23, p<.001), and child communication limitations increased stress risk (β=.13, p=.034). Qualitative analysis further explained these findings through two particularly salient themes. First, exhaustion-driven marital conflict emerged as a vicious cycle in which chronic caregiving demands depleted emotional reserves, eroded relationship quality, and added to the depression and stress of the caregivers. Second, guilt about not supporting the child sufficiently emerged as a persistent, distinct psychological burden. Caregivers described feeling like failures despite sustained effort, grieving missed developmental opportunities, and systemic inadequacies as personal shortcomings. Additional qualitative findings revealed persistent anxiety about the child's future safety, chronic worry about the caregiver's own mortality, and emotional isolation, all contributing to the mental health burden captured statistically.

Conclusions:

Caregiver mental health in families of TAY with developmental disabilities is shaped by intersecting stressors that are both statistically measurable and deeply experiential. Findings suggest that interventions targeting modifiable risk factors at the child and caregiver level, such as avoidance behaviors, parent-child relationships, and child communication skills, could enhance mental health for this caregiver population. Approaches that validate caregiving effort within existing constraints, support co-parenting, and provide couple-based services are also essential to overcome the mental health burden of the caregivers.