Abstract
Objective
Despite behavioral concerns reported among children with epilepsy, evidence‐based family‐focused interventions designed for this population remain limited. The objectives of this study were to characterize behavioral concerns and parent mental health needs in families of children with epilepsy relative to children with non‐epileptic neurological conditions and to examine treatment outcomes following a transdiagnostic virtual behavioral parenting intervention for children with neurological and complex medical conditions (Interact‐North).
Methods
Eighty‐eight families of children aged 3–9 years (38 epilepsy, 50 non‐epileptic neurological conditions) completed baseline assessments of child behavior concerns (Eyberg Child Behavior Inventory‐ ECBI) and parent mental health (Depression, Anxiety, and Stress Scale‐ DASS). Of these families, 60 (22 epilepsy, 38 neurological) completed the virtual parenting intervention. Independent samples t‐tests compared baseline outcomes between groups. Linear mixed‐effects models with fixed effects for time, group, and their interaction assessed intervention effects. Within the epilepsy group, t‐tests and correlations examined how epilepsy‐specific factors were associated with baseline severity and treatment response.
Results
At baseline, groups were comparable on child behavioral concerns and parent mental health outcomes. Among those who completed the intervention, both groups showed significant improvements in behavioral problems and parent stress. The epilepsy group demonstrated larger reductions in behavior problems compared to the neurological group (p = .04). Groups showed comparable improvements in behavioral intensity and parent stress. Within the epilepsy group, epilepsy specific characteristics were not associated with treatment response.
Significance
Children with epilepsy shared similar behavioral problems as children with other neurological conditions. Transdiagnostic oriented behavioral parenting interventions show promise for families of children with epilepsy, with treatment gains comparable to or exceeding those in other pediatric neurological populations. Importantly, epilepsy‐specific medical factors such as drug resistance were not associated with treatment response in this sample, suggesting potential for broad implementation across the epilepsy severity spectrum.
Keywords: child behavior problems, parent mental health, pediatric epilepsy, telehealth, transdiagnostic parenting interventions
Key points.
Children with epilepsy (CWE) have high rates of behavioral problems, comparable to other pediatric neurological populations.
A transdiagnostic parenting intervention improved child behavior and parent stress, with CWE showing especially strong gains.
Epilepsy severity was not associated with post‐treatment improvements in behavior problems.
Higher pre‐intervention behavioral problems predicted greater treatment response.
1. INTRODUCTION
Behavioral difficulties and mental health concerns are prevalent in childhood epilepsy, occurring at rates 3–6 times higher than the general population. 1 , 2 The incidence of neurobehavioral comorbidities (attention‐deficit/hyperactivity disorder (ADHD), mood and anxiety disorders) in children with epilepsy (CWE) is also higher relative to children with other chronic illnesses and often linked to lower health‐related and social quality of life. 2 , 3 , 4 , 5
Despite these adverse outcomes, CWE have longstanding unmet mental health needs. 6 , 7 Mental health concerns often emerge early in the disease course, with up to 45% of new‐onset CWE already presenting with a psychiatric disorder at the time of diagnosis. 8 In a Norwegian cohort of 75 CWE and suspected mental health disorders, over 75% had no contact with psychology or psychiatry services. 9 Left unaddressed, these challenges may worsen and lead to poorer academic, social, and health outcomes than those caused by epilepsy's neurobiological effects alone.
Efforts are now focused on creating and assessing interventions for behavior and mental health in CWE, though current evidence is limited. Systematic reviews have identified few methodologically rigorous trials, and existing programs are characterized by small samples, heterogeneous outcome measures, and limited epilepsy‐informed mental health care. 10 , 11 Among the largest and most recent epilepsy‐specific psychosocial intervention is the Mental Health Intervention for Children with Epilepsy trial. This randomized control trial demonstrated that modular psychological interventions (i.e., following Modular Approach to Therapy for Children with Anxiety, Depression, Traumatic Stress, or Conduct Problems) effectively treated mental health disorders in CWE. 12 , 13 However, this study primarily involved older children (mean age = 10.5Y) and utilized cognitive behavioral therapy, with less focus on younger children and parent‐directed support. 14
Early family focused intervention approaches offer a promising framework to address gaps in mental health care for complex neurological disorders such as epilepsy. Given the high rates of comorbidity and variability in presenting concerns of children with neurological conditions, transdiagnostic interventions that target common underlying mechanisms such as a strong parent–child relationship, family communication, warmth, and responsivity may provide the flexibility needed to meet diverse needs. 15 Parent‐focused interventions are particularly well‐suited for young children, as parents play a central role in shaping the child's environment and can implement strategies across settings. 16
Epilepsy is known to have considerable impact on families. 17 , 18 , 19 Across different cohort studies, over 50% of parents of CWE and siblings experience their own symptoms of anxiety and depression. 17 , 18 , 19 , 20 , 21 Some evidence indicates that parent well‐being might predict child quality of life in pediatric epilepsy more strongly than medical factors. 22 Socioeconomic disadvantage is also a known risk factor for medical conditions including epilepsy and can be associated with reduced medical adherence and access to mental health care. 23 Taken together, this emphasizes the importance and potential for family‐centered interventions for young CWE that consider obstacles to receiving care.
Interact‐North is a transdiagnostic, parent‐focused telemental health intervention designed to reduce emotional and behavioral difficulties in children at neurodevelopmental risk, including those with epilepsy and other congenital and neurological conditions. 24 , 25 , 26 The transdiagnostic approach of Interact‐North reflects a growing recognition in the field, 27 and in pediatric neuropsychology particularly, 7 , 24 , 28 that many neurological and neurodevelopmental conditions share common pathways of risk for emotional and behavioral difficulties, family stress, and challenges in everyday functioning. 29 The program focuses on improving relationships between parents and children by helping parents optimize warmth, responsive, and consistent parenting approaches. A core program component is individualized psychoeducation for parents about their child's neurological conditions, including epilepsy when relevant, and impact on child development, behavior, and emotion regulation. The program is currently offered at no charge within a public provincial health care system and is entirely online/virtual, reducing some barriers to mental health care access. Several families of CWE were part of the initial Interact‐North pilot studies and have been part of co‐design initiatives, ensuring patient representation. This evidence‐based program is now in the clinical implementation phase of delivery, including a sample of children with epilepsy and general neurological populations.
The objectives of the present study were to: (1) Compare baseline child behavioral and parent mental health concerns and program feasibility among CWE with other neurological disorders among families referred. (2) Examine how sociodemographic factors and epilepsy characteristics predict presenting child behavior concerns and parent mental health. (3) Evaluate pre‐post changes in child behavior and parent mental health concerns by group following program participation. (4) Evaluate whether epilepsy‐specific medical characteristics moderate treatment response among CWE.
2. METHODS
This study was a cohort study of prospectively collected clinical data from families referred to Interact‐North at The Hospital for Sick Children in Toronto, Canada between February 2022 and August 2025, as part of a clinical implementation initiative study. Human subjects and institutional research ethics board approval was granted (REB #1000072960).
2.1. Participants
Pediatric patients aged 3–9 years from The Hospital for Sick Children with early brain injury, associated medical conditions, and/or psychiatric conditions were referred to the Interact‐North program due to behavioral or emotional concerns identified by their caregiver/parent and/or health care provider. Children were included in the present study if they had a primary neurological or epilepsy diagnosis. All participants in the current study were able to read and speak English and self‐identified as parents; therefore, the term ‘parent’ rather than ‘caregiver’ is used throughout.
2.2. Interact‐North program
Interact‐North was adapted from the traumatic brain injury focused InTERACT in 2020. 24 , 28 Leveraging participatory design, the program transitioned to a fully transdiagnostic, stepped‐care clinical model, with previously established feasibility and acceptability. 24 , 25 , 30 Grounded in behavior parent training, the program combines up to seven online psychoeducational modules with live video‐based parent coaching sessions that introduce positive parenting skills as well as child behavior management strategies. During sessions, module content is reviewed and applied to the child and family's specific circumstances, and parenting skills are individualized and practiced with live coaching while the parent and child play together. Integrated across all sessions is psychoeducation about common challenges associated with medical conditions for both children and their families. For example, the association between childhood epilepsy, anti‐seizure medications, neuropsychological outcomes, and families' experiences are discussed as relevant to the parent concerns and child's condition. Program therapists were doctoral students, post‐doctoral fellows, and licensed clinical neuropsychologists. All underwent 12 hours of formal training and subsequent individual and group supervision. 24
2.3. Variables & Measures
Parents completed a background/demographic questionnaire as well as baseline and post‐intervention child behavior and mental health measures via REDCap. 31
2.3.1. Sociodemographic information
A background/demographic questionnaire was completed by all parent participants pre‐intervention to collect basic child and parent social demographic information.
2.3.2. Child behavior concerns
Eyberg Child Behavior Inventory (ECBI) assessed child behavior concerns. The ECBI consists of 36 items describing various behavior concerns (e.g., noncompliance, emotional regulation), each rated in terms of frequency from 1 (Never) to 7 (Always) as well as whether parents perceive it to be a problem for them (Yes/No). The ECBI yields two t‐scores: a Problem Score, representing the number of concerns noted to be problems for the parents, and an Intensity Score, based on the summed frequency ratings. Clinical cutoffs were applied to identify clinically significant behavior difficulties, defined as an Intensity or Problem t‐score ≥60. Test–retest reliability on the ECBI is good (.75 after 10 months), and appropriate internal consistency ratings have been reported (Cronbach's α = .94). 32
2.3.3. Parent mental health concerns
Depression, Anxiety, and Stress Scale Short Form (DASS‐21) assessed parent mental health symptoms. The DASS‐21 is a 21‐item self‐report measure rated on a 4‐point scale (0 = ‘Did not apply to me at all’ to 3 = ‘Applied to me very much or most of the time’). 33 The DASS‐21 yields three subscale scores (Depression, Anxiety, Stress) based on summed item responses, with higher scores indicating greater symptom severity. Clinical cutoffs were applied to identify clinically significant mental health difficulties, defined as a Depression raw score ≥13, Anxiety raw score ≥9, or Stress raw score ≥18.
2.3.4. Socioeconomic status (SES)
Parent employment and education
Parent employment status was taken from the background/demographic questionnaire and categorized as: unemployed, part‐time, and full time. Parent education was parent reported highest level of completed education. Data was categorized as: grade 11 or below, high school diploma, college diploma, undergraduate degree, professional or master's degree or higher.
Median household income
Household income was determined using neighborhood‐level data based on participants' residential postal codes. The first three characters of each participant's postal code (Forward Sortation Area (FSA)) were used to link families to their corresponding geographic area in the Canadian Census data. FSA‐level socioeconomic indicators, including median household income, were extracted from Statistics Canada census and used as a proxy measure for family SES. 33
2.3.5. Epilepsy characteristics and secondary neurodevelopmental diagnoses
Relevant data were extracted through electronic medical chart reviews including epilepsy variables: age at onset, epilepsy duration, seizure type, epilepsy type, epilepsy syndrome, etiology, number of anti‐seizure medications, drug‐resistant status, seizure frequency, surgical intervention, as well as neurological history, developmental conditions, cognitive status, and sex at birth. Seizures were classified using the International League Against Epilepsy (ILAE) 2025 classification framework with available clinical, electroencephalographic, and neuroimaging data. 34 For each participant, seizure classification and epilepsy etiology were determined using clinical data from their routine neurological evaluation that occurred closest in time to their enrollment in the program. Neurodevelopmental diagnoses included global developmental delay (GDD), ADHD, Autism Spectrum Disorder (ASD), learning disabilities (LD), and language disorders, and were identified via medical chart review.
2.4. Statistical analyses
Objective 1: Independent samples t‐tests were used to compare baseline child behavior (ECBI Problems/ECBI Intensity) and parent mental health concerns (DASS) between groups (CWE compared to children with non‐epileptic neurological conditions). Fisher's exact tests examined group differences in parent education and employment status. Chi‐square tests examined differences in secondary neurodevelopmental diagnoses between groups. Program feasibility estimates (number of children/families referred, enrolled, and completed) are presented descriptively. Objective 2a: Independent samples t‐tests were used for comparisons of baseline child behavior (ECBI Problems/ECBI Intensity) and parent mental health concerns (DASS) between drug‐resistant versus drug‐responsive participants. Pearson correlations assessed associations between continuous epilepsy variables (number of anti‐seizure medications, epilepsy duration) and presenting concerns. Objective 2b: Pearson correlations were run between continuous socioeconomic variables (household income) and baseline child behavior (ECBI Problems/ECBI Intensity) and parent mental health (DASS) variables. For categorical socioeconomic variables (parent education, employment status), one‐way ANOVAs compared baseline concerns across groups. Due to the exploratory nature of these analyses, corrections for multiple comparisons were not applied. Objective 3: Linear mixed‐effects models assessed intervention effects on outcome measures. Models included fixed effects for time (pre/post), group (CWE, non‐epileptic neurological), and their interaction with random intercepts for participants to account for repeated measures. Objective 4: Independent samples t‐tests compared ECBI Problem/Intensity change scores (calculated as post minus pre, where negative values indicate improvement) between drug‐resistant and drug‐responsive groups. Pearson correlations examined whether epilepsy severity indicators (number of anti‐seizure medications, epilepsy duration) were associated with the magnitude of treatment response.
3. RESULTS
3.1. Study cohort
Feasibility: As shown in Figure 1 (CONSORT) between February 2022 and August 2025, 157 eligible families of children with a primary neurological or epilepsy diagnoses were referred to Interact‐North. A total of 88 children were enrolled (38 CWE and 50 with non‐epileptic neurological conditions). Approximately 15% declined participation (n = 24), followed by loss to follow‐up prior to consent despite expressed interest (n = 22). Reasons for declining participation included lack of time (n = 9) or interest (n = 8), no behavioral concerns (n = 3), or no reason provided (n = 4). Enrollment was higher among CWE compared to the neurological group (75% vs. 47%).
FIGURE 1.
Participant flow through the study (CONSORT diagram).
Program Adherence & Completion Rates: Of the 88 families who started the program, 60 (68%) completed the program (22/38 (57%) CWE, 38/50 (76%) non‐epileptic neurological). Reasons for non‐completion included lack of time, loss of interest, feeling overwhelmed, and family‐related circumstances. Although fewer families of CWE completed the program, a greater number were still receiving treatment at the time of manuscript submission (n = 5).
Group Differences: The CWE and non‐epileptic neurological disorder groups did not differ significantly by sex, χ 2(1) = .01, p = .91. CWE were older (M = 6.76, SD = 1.75) than the neurological disorder group (M = 5.04, SD = 1.44), t(68.43) = 4.86, p < .001, a difference of approximately 1.7 years. Secondary diagnoses were common across both groups. CWE were more likely to have a co‐occurring diagnosis of ADHD than the neurological disorder group (p = .05), but not ASD (Table 1). There were no other differences between groups by parent education or SES. Both groups were racially diverse. Small cell sizes precluded between‐group comparison; the distribution is shown descriptively in Table 1.
TABLE 1.
Participant demographics and baseline characteristics.
| Characteristic | Epilepsy (n = 38) | Neurological (non‐epileptic) (n = 50) | Total (N = 88) | p‐value |
|---|---|---|---|---|
| Demographics | ||||
| Age, years, months, M (SD) |
6 yrs., 9 mos (1 yr., 9 mos) |
5 yrs., 0 mos (1 yr., 5 mos) |
5 yrs., 9 mos (1 yr., 9 mos) |
<.001 |
| Age range, years | 3.0–9.0 | 3.0–8.0 | 3.0–9.0 | |
| Sex | >.99 | |||
| Female, n (%) | 13 (34.2) | 18 (36.0) | 31 (35.2) | |
| Male, n (%) | 25 (65.8) | 32 (64.0) | 57 (64.8) | |
| Race/Ethnicity, n (%) | ||||
| Asian/ East or Southeast Asian | 3 (7.9) | 4 (8.0) | 7 (8.0) | |
| Black/African American | 4 (10.5) | 6 (12.0) | 10 (11.4) | |
| Indian/South Asian | 4 (10.5) | 6 (12.0) | 10 (11.4) | |
| Middle Eastern | 4 (10.5) | 5 (10.0) | 9 (10.2) | |
| Multiracial | 3 (7.9) | 3 (6.0) | 6 (6.8) | |
| Indigenous | 0 (.0) | 2 (4.0) | 2 (2.3) | |
| White/Caucasian | 20 (52.6) | 23 (46.0) | 43 (48.9) | |
| Not reported | 1 (2.6) | 0 (.0) | 1 (1.1) | |
| Clinical characteristics | ||||
| Secondary diagnoses, n (%) | ||||
| ADHD | 19 (50.0) | 14 (28.0) | 33 (37.5) | .05 |
| ASD | 11 (28.9) | 10 (20.0) | 21 (23.9) | .47 |
| GDD | 19 (50.0) | 24 (48.0) | 43 (48.9) | >.99 |
| Socioeconomic factors | ||||
| Parent education, n (%) | .32 | |||
| ≤ Grade 11 | 1 (2.6) | 2 (4.0) | 3 (3.4) | |
| High school diploma | 5 (13.2) | 6 (12.0) | 11 (12.5) | |
| College/University | 10 (26.3) | 20 (40.0) | 30 (34.1) | |
| University degree | 10 (26.3) | 15 (30.0) | 25 (28.4) | |
| Master's degree | 9 (23.7) | 4 (8.0) | 13 (14.8) | |
| PhD | 2 (5.3) | 1 (2.0) | 3 (3.4) | |
| Missing | 1 (2.6) | 2 (4.0) | 3 (3.4) | |
| Parent employment, n (%) | .08 | |||
| Unemployed | 14 (36.8) | 13 (26.0) | 27 (30.7) | |
| Part‐time | 3 (7.9) | 12 (24.0) | 15 (17.0) | |
| Full‐time | 18 (47.4) | 24 (48.0) | 42 (47.7) | |
| Missing | 3 (7.9) | 1 (2.0) | 4 (4.5) | |
| Household income, M (SD) | $94 563 ($28 726) | $101 449 ($81 181) | $98 738 ($64 649) | .59 |
| Baseline behavioral concerns (ECBI) and parent mental health (DASS) measures | ||||
| ECBI problem, t‐score M (SD) | 66.18 (9.41) | 62.30 (8.65) | 63.98 (9.14) | .051 |
| ECBI problem scores above cut‐off (%) | 29.0 (76.30) | 29.0 (58.0) | ||
| ECBI intensity, t‐score M (SD) | 63.53 (9.49) | 61.98 (7.97) | 62.65 (8.65) | .42 |
| ECBI intensity scores above cut‐off (%) | 25.0 (65.80) | 29.0 (58.0) | ‐ | |
| DASS stress, M (SD) | 13.55 (9.63) | 14.29 (11.01) | 13.97 (10.38) | .74 |
| DASS stress above cut‐off (%) | 10.0 (26.32) | 15.0 (30.61) | ‐ | |
| DASS anxiety, M (SD) | 5.53 (6.66) | 6.45 (7.03) | 6.05 (6.85) | .53 |
| DASS anxiety above cut‐off (%) | 8.0 (21.05) | 14.0 (28.57) | ‐ | |
| DASS depression, M (SD) | 8.24 (9.85) | 7.49 (8.91) | 7.82 (9.28) | .72 |
| DASS depression above Cut‐Off (%) | 9.0 (23.68) | 11.0 (22.45) | ‐ | |
Note: One neurological participant completed the ECBI, but not the DASS. DASS analyses include 49 neurological participants. Statistical significance was defined as p < .05. p‐values reflect between‐group comparisons using independent‐samples t‐tests for continuous variables and chi‐square or Fisher's exact tests for categorical variables.
Abbreviations: ADHD, attention‐deficit/hyperactivity disorder; ASD, autism spectrum disorder; DASS, Depression, Anxiety and Stress Scale; ECBI, Eyberg Child Behavior Inventory; GDD, global developmental delay; M, mean; SD, standard deviation.
Clinical epilepsy characteristics of the CWE group are presented in Table 2. Mean age at epilepsy onset was 1 year, 7 months (SD = 1 year, 6 months, range = 2 days to 5 years). Participants had been living with epilepsy for an average of 5 years, 2 months (SD = 2 years, 2 months) at the time of referral. Most common epilepsy types were focal (n = 25, 65.8%), with generalized and combined focal and generalized epilepsy each accounting for 6 cases (15.8%), and the epilepsy type unknown in 1 case (2.6%). Etiologies were predominantly structural (n = 20, 52.6%) and genetic (n = 8, 21.1%), with combined structural and genetic factors in 4 cases (10.5%), metabolic in 2 (5.3%), and unknown in 4 (10.5%). Children were taking an average of approximately two anti‐seizure medications (SD = 1.20), ranging from 0 to 4 medications. Eighteen children (47.4%) met criteria for drug‐resistant epilepsy per ILAE definition. 34 Ten children (26.3%) had undergone epilepsy surgery. The majority of participants (n = 28, 73.7%) were managed medically, without surgical intervention (See Table 2).
TABLE 2.
Seizure and epilepsy classification and clinical characteristics (N = 38).
| Category | n | % |
|---|---|---|
| Seizure type a | ||
| Focal | 31 | 81.6 |
| Generalized | 12 | 31.6 |
| Unknown whether focal or generalized | 1 | 2.6 |
| Unclassified | 1 | 2.6 |
| Epilepsy type b | ||
| Focal | 25 | 65.8 |
| Generalized | 6 | 15.8 |
| Combined focal and generalized | 6 | 15.8 |
| Unknown | 1 | 2.6 |
| Etiology c | ||
| Structural | 20 | 52.6 |
| Structural and genetic | 4 | 10.5 |
| Genetic | 8 | 21.1 |
| Metabolic | 2 | 5.3 |
| Infectious | 0 | .0 |
| Immune | 0 | .0 |
| Unknown | 4 | 10.5 |
| Epilepsy syndrome d | ||
| Identified syndrome | 11 | 28.9 |
| Doose syndrome (epilepsy with myoclonic–atonic seizures) | 2 | 5.3 |
| Infantile epileptic spasms syndrome (IESS/West) | 2 | 5.3 |
| DEE with spike‐and‐wave activation in sleep (DEE‐SWAS) | 1 | 2.6 |
| EE with spike‐and‐wave activation in sleep (EE‐SWAS) | 1 | 2.6 |
| Developmental and epileptic encephalopathy, SLC6A1‐related | 1 | 2.6 |
| Lennox–Gastaut syndrome | 1 | 2.6 |
| Gelastic epilepsy with hypothalamic hamartoma | 1 | 2.6 |
| PCDH19‐related epilepsy | 1 | 2.6 |
| Mesial temporal lobe epilepsy with hippocampal sclerosis | 1 | 2.6 |
| None identified | 27 | 71.1 |
| Measure | M (SD) | Range |
| Clinical characteristics | ||
| Age at onset, years | 1.56 (1.50) | 2 days–5.0 |
| Duration of epilepsy, years | 5.18 (2.19) | 1.0–9.0 |
| Number of ASMs | 1.95 (1.20) | .0–4.0 |
| Category | n | % |
| Epilepsy surgery | ||
| Yes | 10 | 26.3 |
| No | 28 | 73.7 |
Note: Seizure types follow the ILAE 2025 classification; epilepsy type and etiology the ILAE 2017 classification; syndromes the ILAE 2025 classification. Percentages are of N = 38.
Abbreviations: ASM, anti‐seizure medication; DEE, developmental and epileptic encephalopathy; EE, epileptic encephalopathy; M, mean; SD, standard deviation.
A child with more than one seizure type is counted in each row that applies, so these rows total more than 38 children and the percentages add to more than 100%.
One per child; mutually exclusive. “Combined” = both focal and generalized features.
Four children had co‐existing structural and genetic etiologies (shown as one row); post‐infectious epilepsies with a fixed lesion are classified as structural.
“Identified syndrome” is the sum of the named syndromes below it. DEE‐SWAS and EE‐SWAS are the same spectrum (developmental component present vs. absent).
The non‐epileptic neurological group was most commonly characterized by hypoxic ischemic encephalopathy (n = 15, 29.4%) and stroke (n = 14, 27.5%), followed by intraventricular hemorrhage and congenital brain malformation (both n = 6, 13.7%), with hydrocephalus, encephalopathy, neurofibromatosis type 1, cerebral venous sinus thrombosis, and Crouzon syndrome making up the remainder of the sample.
3.2. Objective 1: Baseline child behavioral and parental mental health concerns
There were no differences in ECBI Problem/Intensity or DASS scores between CWE and the non‐epileptic neurological group (See Table 1; see also Figure 2). At baseline, over half of participants in both groups exceeded clinical cutoffs for behavioral concerns (ECBI Problem: 76.3% CWE, 58.0% non‐epileptic neurological; ECBI Intensity: 65.8% CWE, 58.0% non‐epileptic neurological). Between one‐quarter to one‐third of parents reported clinically elevated stress, anxiety, or depression symptoms across both groups. Given the age difference between groups, age was examined as a potential covariate but did not significantly influence results and was therefore not included in final models.
FIGURE 2.
Baseline distributions of child behavior (ECBI Problem and Intensity T‐scores) and parent mental health (DASS Stress, Anxiety, and Depression raw scores) by group.
3.3. Objective 2a: Epilepsy characteristics and baseline child behavior and parental mental health concerns
Children with drug‐resistant epilepsy had higher ECBI problem scores (M = 68.56) compared to children with drug‐responsive epilepsy (M = 63.56) prior to intervention, but the difference was not statistically significant, t(33.34) = 1.69, p = .10, d = .56. However, children with drug‐resistant epilepsy had significantly higher ECBI intensity scores pre‐intervention (M = 67.67) compared to drug‐responsive children (M = 59.33), t(33.36) = 3.07, p = .004, d = 1.02. Drug‐resistant epilepsy did not predict DASS scores prior to intervention. Number of anti‐seizure medications, age at onset, and epilepsy duration did not predict baseline ECBI Problem/Intensity or DASS scores.
3.4. Objective 2b: Socioeconomic predictors of baseline child behavior and parental mental health concerns
In the full sample, household income, parental education and employment status were not associated with baseline child behavior or parent mental health concerns. Effect sizes were consistently small (η2 = .003–.05).
3.5. Objective 3: Pre‐post intervention effects
Of those who completed the program and post‐intervention rating scales, parents reported significant reductions in child behavior concerns (ECBI Problem score) F(1, 48) = 34.58, p < .001 (see Figure 3 and Table 3). There was a significant interaction between time and group, F(1, 48) = 5.40, p = .02, with parents of CWE reporting a larger reduction in ECBI Problem scores following intervention (M diff = −8.75 points, SE = 1.76, p < .001, d = 1.28) than non‐epileptic neurological group (M diff = −3.79 points, SE = 1.21, p = .003, d = .53). ECBI Intensity scores also declined for all children (F(1, 48) = 19.75, p < .001), with the CWE group showing greater improvement (M diff = −5.25 points, SE = 1.41, p = .0005) compared to the non‐epileptic neurological group (M diff = −2.32 points, SE = 1.00, p = .020), with no significant interaction by group (p = .09). All parents reported significant reductions in DASS stress from pre‐ to post‐intervention, F (1, 46) = 12.07, p = .001, and DASS anxiety and depression scores were reduced in both groups, though these reductions did not reach statistical significance.
FIGURE 3.
Eyberg Child Behavior Inventory (ECBI) Problem T‐scores (mean ± standard error) at pre‐ and post‐intervention, by group.
TABLE 3.
Pre‐post intervention changes by group.
| Measure | Group | n | Pre M (SD) | Post M (SD) | t | p | Cohen's d |
|---|---|---|---|---|---|---|---|
|
ECBI problem t‐score |
Epilepsy | 16 | 62.25 (8.14) | 53.50 (7.47) | 5.13 | < .001 | 1.28 |
| Neurological | 34 | 61.85 (8.89) | 58.06 (11.24) | 3.10 | .004 | .53 | |
|
ECBI intensity t‐score |
Epilepsy | 16 | 60.38 (8.00) | 55.12 (6.31) | 3.03 | .008 | .76 |
| Neurological | 34 | 61.91 (8.74) | 59.59 (8.52) | 2.76 | .009 | .47 | |
| DASS stress | Epilepsy | 15 | 11.07 (7.52) | 6.47 (5.01) | 2.44 | .028 | .63 |
| Neurological | 33 | 14.27 (11.12) | 11.48 (9.98) | 2.42 | .021 | .42 | |
| DASS anxiety | Epilepsy | 15 | 3.33 (3.29) | 2.73 (3.10) | .66 | .522 | .17 |
| Neurological | 33 | 6.70 (7.50) | 5.42 (6.95) | 1.62 | .116 | .28 | |
| DASS depression | Epilepsy | 15 | 3.47 (5.01) | 3.33 (5.05) | .14 | .892 | .04 |
| Neurological | 33 | 7.52 (8.98) | 6.91 (9.07) | .61 | .544 | .11 |
Note: All t‐tests are paired samples tests within each group. Cohen's d calculated for within‐group effect sizes (positive values indicate improvement from pre to post; calculated as mean difference divided by standard deviation of differences). One participant in each group completed the ECBI, but not the DASS post‐intervention. As such, ECBI analyses included 16 CWE and 34 neurological, while DASS analyses included 15 CWE and 33 neurological completers.
Abbreviations: DASS, Depression, Anxiety and Stress Scale; ECBI, Eyberg Child Behavior Inventory; M, mean; SD, standard deviation.
3.6. Objective 4: Epilepsy‐specific moderators of treatment response
Among CWE, epilepsy‐related medical factors did not moderate treatment response. Drug resistance status, number of anti‐seizure medications, and epilepsy duration were not associated with the magnitude of improvement in either ECBI Problems/Intensity or DASS scores (all ps > .24). Children with higher baseline ECBI Problem scores showed greater reductions in scores from pre‐ to post‐treatment (r = −.51, p = .04), indicating CWE with higher initial behavior concerns demonstrated larger treatment gains.
4. DISCUSSION
This study evaluated behavior concerns of children with neurological conditions referred to a transdiagnostic parenting intervention (Interact‐North). We compared initial behavioral and parent mental health concerns between families of CWE and non‐epileptic neurological conditions, finding comparable levels. A substantial number of children also exceeded clinical cutoffs for behavior problems. Sociodemographic factors were not associated with presenting concerns in either group. More families of CWE enrolled in the program than the neurological group, but fewer completed treatment. There were significant improvements in child behavior concerns following the intervention, with the CWE group demonstrating particularly large improvements. Epilepsy‐specific factors did not moderate presenting concerns or treatment response.
The high prevalence of clinically elevated behavioral concerns at baseline (ECBI Problems: 76% CWE, 58% neurological) aligns with previous research documenting elevated behavioral problems across pediatric neurological populations. 35 , 36 This is contrary to our expectations of higher concerns among families of CWE. 2 Several factors may explain this discrepancy. Our comparison group consisted of children with other neurological conditions rather than healthy controls or children with non‐neurological chronic illnesses as used in prior comparative studies (e.g., asthma, diabetes). 37 Additionally, the families in this study were seeking support via parent‐focused behavioral intervention, suggesting that both groups were experiencing clinically meaningful behavioral concerns. The comparable rates of behavioral concerns may reflect transdiagnostic mechanisms underlying behaviors attributable to disrupted neurodevelopmental processes and the psychosocial impact of living with a brain‐based medical condition.
Overall, the intervention yielded encouraging results across groups. The CWE group showed a particularly strong treatment response. These effect sizes were comparable if not higher than those reported in meta‐analyses of behavioral parent training programs for typically developing children, and approach the effects observed in more intensive, condition‐specific interventions for pediatric epilepsy. 10 , 12 , 13 , 38 Parent‐focused behavioral interventions such as Interact‐North may be particularly well‐suited to address the specific behavioral challenges faced by families of CWE, perhaps by reducing parent–child conflict and improving parents' confidence in managing difficult behaviors amidst the stress of seizure management. The program is also individualized to the family to discuss how epilepsy impacts a child's development and the ways seizures and treatment may affect learning, emotions, and developmental milestones.
Parental stress also improved in both groups following the intervention. This is promising because parent mental health is not directly addressed in the program and may reflect a secondary benefit. Increased feelings of parenting competence, from both the child‐centered psychoeducation about the child's neurological condition and the hands‐on coaching, skills, and strategies provided to help with day‐to‐day family interactions, may have contributed to improvements in parental mental health. In contrast, parent anxiety and depression symptoms did not change. This is expected given the child‐focused nature of the intervention, without individual therapeutic targets addressing parents' mental health needs. It may be possible that improvements in parent wellbeing could emerge more gradually following sustained behavioral improvements in children. In summary, parenting stress may be more proximally linked to the intervention targets than general anxiety or depression. 39 As parents gain more concrete skills to manage child behavior, they likely experience more immediate relief in child‐related stressors. In contrast, anxiety and depression symptoms involve broader cognitive and emotional factors that may be less responsive to improvements in child behavior alone. Longitudinal follow‐up of parental mental health and/or design of specific programming targets may be warranted.
The finding that baseline child behavior concern severity predicted treatment response (higher baseline problems associated with greater improvement) is clinically encouraging, as it suggests that families presenting with the most significant behavioral concerns are well‐positioned to benefit from intervention. This pattern is consistent with the general behavioral parent training literature, that families with more severe presenting concerns often demonstrate larger absolute gains. 28 , 38 , 40
Sociodemographic factors were not associated with presenting child behavior or parent mental health concerns in our sample. While this may reflect true absence of their influence within our cohort, alternative explanations warrant consideration. Our sample was drawn from families accessing care at a publicly‐funded institution without direct costs. Our sample size may also have limited power to detect more nuanced impact of racial and cultural identity, particularly given the sample's heterogeneity. Our analyses only focused on primary parent characteristics (e.g., education, employment). Future work will benefit from considering complex family configurations, such as household earning patterns, educational concordance between parents, or the influence of family structure. With the exception of higher baseline behavioral intensity among children with drug‐resistant epilepsy, epilepsy disease severity was also largely not associated with baseline behavioral concerns, nor did these factors moderate treatment response. The literature is mixed as to whether epilepsy or seizure‐related variables are predictive of psychopathology or behavioral concerns. 41 Some literature suggests that the general impact of having a diagnosis of epilepsy, regardless of severity of symptoms, is more likely to influence behavioral outcomes than specific seizure parameters. 42 In contrast, other research shows that psychosocial problems are not only more prevalent in CWE, but are also significantly associated with epilepsy syndrome, primary seizure type, age at onset, and seizure frequency. 43
Interpretation of these findings should be considered in the context of several limitations. The sample size was small, with attrition from enrolment to program completion and in completion of post‐intervention surveys. While attrition rates are consistent with intervention literature, 30 this reduced statistical power for evaluating treatment effects, particularly within CWE. However, the statistical size of the effect is compelling even within this reduced sample of families. Future efforts will benefit from considering what factors optimize family engagement and retention, with specific focus on the needs of families of CWE. The CWE group was also significantly older than the neurological group, potentially confounding group comparisons. There was also considerable heterogeneity in comorbidities across the sample, that may potentially relate to the older age of the CWE and access to assessment. This limited consideration of their impact on treatment response. Prior studies of this program, however, have consistently documented equivalent outcomes by comorbidities, including intellectual level, consistent with evidence that global IQ indices have limited utility as clinical moderators. 24 , 44 However, consistent parent feedback has highlighted its ability to adapt to the cognitive level of the child and guide parental expectations and approaches. 24 , 25 , 26 Finally, this pediatric tertiary setting captures the perspective of families of children with higher acuity epilepsy needs, potentially contrasting with families served in community neurology clinics.
5. CONCLUSION
This study highlighted the behavioral needs among CWE and the clinical relevance and impact of the Interact‐North program. We observed promising preliminary outcomes for both CWE and other non‐epileptic neurological conditions, with particularly robust changes in outcome observed in the CWE group. Epilepsy severity indicators did not moderate treatment response, suggesting potential for broader dissemination of this behavioral intervention across the epilepsy severity spectrum. Future clinical research will benefit from broadening the scope to include more families of CWE and investigate the sustained impact of parent‐focused behavioral interventions over time.
AUTHOR CONTRIBUTIONS
Conceptualization: S.J.F., B.C.B., T.S.W. Methodology: S.J.F., B.C.B., T.S.W. Formal Analysis: S.J.F. Writing – Original Draft: S.J.F., B.C.B., C.C.C., H.O., T.S.W. Writing – Review & Editing: S.J.F., B.C.B., C.C.C., H.O., T.S.W. Visualization: S.J.F., C.C.C. Supervision: T.S.W.
FUNDING INFORMATION
This study was funded by the Garry Hurvitz Center for Brain and Mental Health Program Development Grant.
CONFLICT OF INTEREST STATEMENT
None of the authors have any conflict of interest to disclose.
ETHICAL PUBLICATION STATEMENT
We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
CONSENT
Informed consent was obtained from the parents or legal guardians of all participating children for enrollment in the Interact‐North program and for the use of their de‐identified data for research purposes.
ACKNOWLEDGMENTS
We are grateful to the families of the patients who participated in the program and provided consent to use their data for research purposes, as well as to the therapists who delivered the intervention and the research team for their operational support and ongoing contributions. S.J.F. is generously supported by a CIHR Doctoral Award (Ref #: 181532) and by The Meighen Wright Foundation Maternal‐Child Health Graduate Student Scholarship. This funding did not contribute to the design or execution of this study.
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.