Abstract
Correale C, Mercier M, Cappelletti S, Pietrafusa N, Falamesca C, Collalti E, et al. Epilepsia. 2025;66(12):4960-4971. doi:10.1111/epi.18580. Accession Number: 40751598; PMCID: PMC12779327. 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.
Commentary
As pediatric epileptologists, we understand the concept of “person and family centered care” as we care for the entire family and their well-being during a child's journey with epilepsy. While taking care of the patient seems to be the accepted responsibility of every practitioner, attending to the primary caregiver might not be seen as an important responsibility by every epileptologist.
More than 10 years ago, Epilepsy Currents featured a commentary on the bidirectional and multifactorial relationship between parental stress, pediatric epilepsy, and health-related quality of life for both parent and child. 1 So, how and why did we choose another article looking at the predictors of parental stress for an editorial? 2
This is where every epileptologist and neurologist should be aware of the Intersectoral Global Action Plan (IGAP) against epilepsy and neurological disorders, developed through collaboration between the International League Against Epilepsy (ILAE), International Bureau of Epilepsy (IBE), and the World Health Organization (WHO).
IGAP and relationship of this work to IGAP best practices: On November 12, 2020, member countries of the WHO (United States cosponsored the resolution) presented the draft IGAP resolution to the World Health Assembly, and it was unanimously approved. IGAP implementation will occur between the years of 2022 and 2031 for better care of patients with epilepsy (and neurological conditions), 3 all over the world (IGAP Unpacked—International Bureau for Epilepsy). Although at first read it might seem that the plan is skewed in its focus and implementation towards low- and middle-income countries, it is indeed applicable to the entire epilepsy community with concrete recommendations for changes in policy and implementation of epilepsy care. One of the key pillars of IGAP is the application of person and family centered care in all neurological conditions. Additionally, integration of mental and physical health is emphasized. Therefore, with this IBE-, ILAE-, and WHO-supported directive, caring for the caregiver becomes the best practice goal to be achieved for all patients and their caregivers.
Person and family centered care in epilepsy: Caring for a child with epilepsy is immensely stressful for parents. Many patients with epilepsy also have behavioral and neurodevelopmental challenges. Recently, focus has shifted from targeting seizure variables and seizure outcomes to nonseizure variables and nonseizure outcomes to improve the overall well-being of the entire family. There are several recent publications on the topic of nonseizure outcomes as pertinent to overall health and quality of life of the entire family—especially in children with developmental and epileptic encephalopathies, as noted, for example, in patients with tuberous sclerosis, 4 Lennox–Gastaut syndrome 5 and Dravet syndrome. 6 There is overall robust literature on parental stress7,8 as well as gender inequalities; with mothers experiencing greater stress, trauma, 9 and stigma 10 associated with their child's diagnosis of epilepsy. The loss of a primary caregiver to depression, stress, or burnout is destined to have devastating consequences not only on the child with epilepsy but also on the entire family and healthcare system.
What does this study hypothesize, and what are the findings? Correale et al 2 set out to do further work on seizure as well as nonseizure related factors that can be easily identified and modified in order to improve parental stress. The authors hypothesized that parent stress would be more strongly associated with abnormal behavior and cognition (more than seizure-related variables such as seizure type or etiology alone) and that lower education levels in parents would be associated with increased stress. Parental stress was measured by the parental stress index short form and its specific subscales: parental distress subscale, parent–child dysfunctional interaction, and difficult child (DC) subscale. Additionally, the degree of social desirability (a measure of reduced reporting or stigma) using the defensing responding (DSR) and total stress scores (TSS) was also obtained. A total of 117 patients with epilepsy and 149 caregivers were subjects of this cross-sectional study. Patient behavior factors were assessed by the Child Behavior Checklist (CBCL), and internalizing symptoms such as anxiety, depression, and social withdrawal, as well as externalizing behavior such as aggression, were specifically documented. Mean intelligence quotient scores were calculated where available and supplemented by clinical evaluation.
Main findings were generally intuitive, but strengthened by statistical analysis and objective measures: clinically significant abnormalities on CBCL were associated with higher scores on parental stress. Externalizing symptoms and especially internalizing symptoms were associated not only with TSS but also with disrupted parent–child interaction and subscores of DC on parental stress forms. Epilepsy treatment factors, especially polytherapy and drug resistance, were linked to higher levels of dysfunctional parent–child interaction. Poor parental education, as well as moderate cognitive impairment in the child, was also associated with increased parental stress.
At the outset, authors admit a limited sample size, risk of multicollinearity among independent variables, risk of overfitting, and, therefore, this study needs to be replicated with larger sample sizes. Additionally, systematic assessment of comorbid neurodevelopmental conditions such as autism spectrum disorder and attention-deficit/hyperactivity disorder was not included in this study.
Actionable Findings Related to Parental Stress and Take-Home Message
Identify cognitive and behavioral vulnerabilities in children with epilepsy as early as possible–every child with epilepsy should be screened for behavioral abnormalities and neurodevelopmental challenges and further treated, as necessary.
Patients with drug-resistant epilepsy are at higher risk for neurodevelopmental disorders that, in turn, will affect the psychosocial well-being of caregivers.
Patients with moderate intellectual disability (as against severe disability) cause greater distress to caregivers due to unmet or unclear expectations for the future.
Most primary caregivers are mothers. Most are likely to underreport the levels of stress they experience. It is important to reach out to them preemptively, in a sensitive fashion, without judgment.
How do We Implement Best Practices for Caregivers While Taking Care of Complex Epilepsy Patients Without Giving Ourselves More to do With Less?
Integrated models, trialed in the UK, where every epilepsy visit (in patients identified at risk) is followed up/paired with an asynchronous visit with a mental health provider, have proved to be both clinically useful and cost-effective in reducing behavioral and mental health symptoms in patients with epilepsy. 11 While multidisciplinary clinics are generally discouraged or difficult to implement at most hospitals, we can empower community health workers, social workers, mid-level providers, and our nursing team to be at the forefront of screening and subsequent referral for caregivers at risk.
The United States was a core representative and sponsor for IGAP and its implementation. This opens up several opportunities for advocacy. In the best interests of our patients and their families, we must advocate policy changes at the local (our places of work), regional, and national levels.
