Abstract
Parental stress is a critical yet understudied dimension of childhood total blindness, a condition that imposes substantial developmental, emotional, and functional challenges on families. This cross-sectional study assessed parenting stress, maternal health symptoms, and children's functional vision-related quality of life in 81 mothers of children aged 0 to 12 years with total congenital blindness. Parenting stress was assessed in the full sample using the Parenting Stress Index-Fourth Edition (PSI-4). Children's functional vision-related quality of life was evaluated in age-specific subsamples using the Quality of Family Vision Impact (QFVI-3 for children aged 0-3 years and QFVI-7 for children aged 3-7 years). All participants also completed a sociodemographic and maternal health survey. Total Parent Stress showed moderately elevated percentile scores (mean ≈ 67), with the highest PSI-4 subdomains in Adaptability, Depression, and Health. Approximately 21% of mothers scored within the clinical range for high stress. Maternal symptoms including sadness, insomnia, headaches, forgetfulness, and musculoskeletal pain were significant (all p < 0.01). QFVI global scores indicated moderate impairments in functional vision-related quality of life across age groups. Life Stress demonstrated a small-to-moderate negative correlation with QFVI-7, suggesting that cumulative environmental stressors may adversely affect children's functional outcomes. Several factors were associated with more favorable outcomes. Among children under three years of age, maternal engagement in physical activity was associated with higher QFVI scores, whereas among children aged 3-7 years, school attendance was associated with higher functional vision-related quality of life scores. In contrast, sociodemographic disadvantage, limited access to educational adaptations, and reduced maternal participation in work or leisure activities were associated with higher levels of parental stress. These findings highlight the importance of multidisciplinary, family-centered care incorporating psychosocial assessment, early stimulation, orientation and mobility support, and maternal mental health interventions in pediatric ophthalmology.