<p> To synthesize evidence on the mental health and quality of life (QoL) of parents of children with epilepsy and to organize findings using the Stress Process Model. We emphasize appraisal and coping under uncertainty, stigma-related stressors, and contextual resources to clarify plausible pathways and buffering conditions for caregiver distress. We conducted a purpose-driven narrative review with targeted searches of PubMed, Scopus, and Web of Science for English-language studies published from January 2015 to August 2025. We prioritized epidemiologic, interventional, and qualitative research, supplemented by reference screening and forward citation tracking. Given heterogeneity in designs and outcomes, evidence was thematically synthesized and structured by the Stress Process Model rather than meta-analyzed. Across studies, parents of children with epilepsy consistently report higher levels of anxiety, depression, stress, and sleep problems, alongside poorer health-related quality of life, compared with parents of peers without epilepsy. Mothers generally report greater burden than fathers. Higher caregiving load is frequently associated with drug-resistant epilepsy, early onset, severe seizure types, adverse effects of anti-seizure medications, and co-occurring neurodevelopmental and behavioral conditions, whereas associations with seizure frequency are more heterogeneous. These patterns correspond with the Stress Process Model, indicating that appraisal and coping mechanisms influence the conversion of clinical stressors into parental outcomes. Plausible mediating pathways include associative (courtesy) stigma and sleep disruption, while social support and family resilience, cultural context, socioeconomic status, and health literacy may moderate risk and resilience. Parental well-being is integral to pediatric epilepsy care. A family-centered approach should standardize screening for parental distress, address sleep loss and stigma-related stressors, and provide timely psychoeducation, counseling, and peer support through coordinated referral pathways. Services should also incorporate respite and practical resources tailored to cultural and socioeconomic contexts. Future research should prioritize longitudinal trajectories, caregiver-focused trials that include fathers, cross-cultural investigations, and policy and health economics evaluations, including technology-enabled supports that can be scaled in routine care.</p> Graphical Abstract <p></p>

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The invisible burden: a biopsychosocial narrative review of parental mental health and quality of life in childhood epilepsy

  • Xinlin Huang,
  • Maosen Guan,
  • Bohan Wu,
  • Tatyana R. Tomenko,
  • Olga Ivanovna Dorogina,
  • Ningkun Xiao

摘要

To synthesize evidence on the mental health and quality of life (QoL) of parents of children with epilepsy and to organize findings using the Stress Process Model. We emphasize appraisal and coping under uncertainty, stigma-related stressors, and contextual resources to clarify plausible pathways and buffering conditions for caregiver distress. We conducted a purpose-driven narrative review with targeted searches of PubMed, Scopus, and Web of Science for English-language studies published from January 2015 to August 2025. We prioritized epidemiologic, interventional, and qualitative research, supplemented by reference screening and forward citation tracking. Given heterogeneity in designs and outcomes, evidence was thematically synthesized and structured by the Stress Process Model rather than meta-analyzed. Across studies, parents of children with epilepsy consistently report higher levels of anxiety, depression, stress, and sleep problems, alongside poorer health-related quality of life, compared with parents of peers without epilepsy. Mothers generally report greater burden than fathers. Higher caregiving load is frequently associated with drug-resistant epilepsy, early onset, severe seizure types, adverse effects of anti-seizure medications, and co-occurring neurodevelopmental and behavioral conditions, whereas associations with seizure frequency are more heterogeneous. These patterns correspond with the Stress Process Model, indicating that appraisal and coping mechanisms influence the conversion of clinical stressors into parental outcomes. Plausible mediating pathways include associative (courtesy) stigma and sleep disruption, while social support and family resilience, cultural context, socioeconomic status, and health literacy may moderate risk and resilience. Parental well-being is integral to pediatric epilepsy care. A family-centered approach should standardize screening for parental distress, address sleep loss and stigma-related stressors, and provide timely psychoeducation, counseling, and peer support through coordinated referral pathways. Services should also incorporate respite and practical resources tailored to cultural and socioeconomic contexts. Future research should prioritize longitudinal trajectories, caregiver-focused trials that include fathers, cross-cultural investigations, and policy and health economics evaluations, including technology-enabled supports that can be scaled in routine care.

Graphical Abstract