Quality of Life Among Saudi Mothers of Children with Autism Spectrum Disorder: Associations with Caregiver Burden, Psychological Distress, Financial Experiences, and Post-Diagnosis Service Pathway Clarity

Abstract

Highlights What are the main findings? Caregiver burden was the factor most strongly associated with lower maternal quality of life among Saudi mothers of children with ASD. Higher household income and clearer post-diagnosis service pathways were each associated with better maternal quality of life in the multivariable model. Caregiver and service-related variables together explained 59.3% of the variation in maternal quality of life. Mothers’ brief comments highlighted therapy affordability and the need for clearer guidance after an ASD diagnosis. What is the implication of the main findings? These findings highlight caregiver support, affordability, post-diagnosis guidance, and service coordination as promising priorities for family-centred ASD service development and prospective evaluation. Further research can identify which approaches most effectively strengthen maternal wellbeing. Abstract Background: Mothers of children with autism spectrum disorder (ASD) play a central role in coordinating multidisciplinary interventions. This study examined quality of life (QoL) among Saudi mothers of children with ASD and its associations with caregiver burden, psychological distress, financial experiences, and perceived clarity of post-diagnosis service pathways. Methods: This cross-sectional quantitative survey included an exploratory free-text component. Of 109 survey submissions, 106 contained completed core survey data. Two brief open-ended questions were presented to 60 participants; 53 provided a post-diagnosis challenge response and 46 provided a general additional comment. These responses were reviewed descriptively as supplementary contextual observations. QoL was assessed using an adapted 22-item Arabic questionnaire derived from the Arabic WHOQOL-BREF source instrument and was analysed as an adapted QoL composite rather than as standard WHOQOL-BREF domain scores. Hierarchical linear regression used a fixed complete-case sample, and regression diagnostics and sensitivity analyses were conducted. Results: Ninety-nine mothers had sufficient valid responses to calculate the adapted QoL composite (mean = 50.65, SD = 17.32, on a 0–100 metric). The hierarchical regression included 82 participants and explained 59.3% of the variance in adapted QoL (R2 = 0.593; adjusted R2 = 0.536). Higher caregiver burden was associated with lower adapted QoL (B = −12.94, p < 0.001), whereas higher household income (B = 3.19, p = 0.040) and greater pathway clarity (B = 6.92, p = 0.005) were associated with higher adapted QoL. Psychological distress and perceived financial burden were associated with QoL in bivariate analyses but did not show statistically significant unique associations in the multivariable model. The free-text observations referred to caregiving demands, emotional adjustment, service-navigation uncertainty, and therapy affordability; they were not treated as formal qualitative findings. Conclusions: In this cross-sectional Saudi sample, caregiver burden emerged as the factor most strongly associated with lower adapted maternal QoL, whereas higher household income and clearer post-diagnosis service pathways were associated with better QoL. These findings highlight the importance of family-centred approaches that attend to caregiving demands, affordability, and access to clear post-diagnosis guidance. Prospective research using validated or fully documented measures should examine how caregiver and service-related factors can be addressed to strengthen maternal wellbeing over time.