Neurocognitive, behavioral, and treatment burden as key predictors of parental stress in pediatric epilepsy.

Abstract

Objective: Parental stress in pediatric epilepsy is often linked to seizure-related factors. However, less is known about the contribution of child cognitive functioning, behavioral symptoms, and treatment complexity to caregiver burden. This study aimed to investigate how these variables, along with sociodemographic factors, predict perceived parental stress.

Methods: We conducted a cross-sectional study including 117 children with epilepsy and 149 caregivers. Cognitive functioning was classified through standardized assessments; behavioral symptoms were evaluated using the Child Behavior Checklist (CBCL); and parental stress was measured with the Parenting Stress Index-Short Form (PSI-SF). Clinical variables included epilepsy etiology, seizure control, drug resistance, and medication regimen. Group comparisons and regression models were used to explore predictors of stress.

Results: Higher stress levels were observed among parents of children with moderate intellectual disability, compared to those with normal cognition. Clinical-range behavioral symptoms-especially internalizing problems-were significantly associated with elevated stress across PSI domains. Parents of children receiving polytherapy or with drug-resistant epilepsy reported higher levels of dysfunctional parent-child interaction. Lower educational attainment was also linked to greater stress. Although no stress differences emerged by caregiver gender, most participants were mothers. Notably, elevated Defensing Responding scores suggested a potential underreporting of caregiver burden.

Significance: These findings indicate that child cognitive and behavioral characteristics, along with treatment complexity, play a greater role in parental stress than core epilepsy variables alone. It is notable that, the tendency to underreport stress may obscure caregiver needs, especially in clinical settings relying solely on self-report measures. Routine caregiver screening and multimodal assessment strategies-including interviews and observations-should be integrated into epilepsy care pathways. Supporting caregiver well-being is essential to sustaining family functioning. It aligns with the priorities outlined in the World Health Organization (WHO) Intersectoral Global Action Plan (IGAP), which highlights caregiver support as a key pillar of person- and family-centered care for neurological conditions.