Pilot study of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: Coping Openly and Personally with Epilepsy (COPE)

Abstract

The aim of this study was to pilot test an intervention based on empirically supported cognitive-behavioral techniques and theory-driven self-management content. The Coping Openly and Personally with Epilepsy (COPE) Program focused on enhancing coping skills, self-efficacy, and self-management to promote resilience in youth with epilepsy and their caregivers. Nine youth aged 10–15 and a parent completed several self-report measures pre- and post-intervention. Results revealed that parents did rate significant improvements in their children's coping skills following the COPE intervention. Further, compared with pre-assessment, children rated significant improvements in self-efficacy for seizure management. Child knowledge of epilepsy also significantly improved following the intervention. Two children reported mild suicidal ideation prior to the intervention, whereas no children reported ideation following the intervention. Results provide a foundation for further development of the COPE Program and suggest a randomized, controlled trial to examine the effectiveness of COPE for youth with epilepsy and their parents.

Introduction

Pediatric epilepsy is a complicated neurological disorder in which seizures are indeed the most visible signs; however, children with epilepsy are also at increased risk for poor psychosocial adjustment as a result of a complex interaction between neurological, biological, and psychosocial factors [1]. Seizures by their nature are associated with a loss of control and uncertainty for when the next one will occur. Additionally, even with adequate adherence to the medical regimen, children may continue to experience seizures. This noncontingency associated with epilepsy may be one of the most difficult challenges faced by children with recurrent seizures. A recent critical review of the literature indicated that “cognitive appraisal variables” and coping skills are more robust predictors of child psychosocial adjustment than illness-related variables [1]. To illustrate, higher self-efficacy for seizure management is related to more positive attitudes about epilepsy and less seizure worry [2]. Recently, Wagner et al. [3] demonstrated that hopelessness mediates the attitude toward the epilepsy-depressive symptom relationship and that self-efficacy is an independent predictor of depressive symptoms in youth with epilepsy.

It has been well documented that epilepsy affects the family and not solely the child. Caregivers of youth with epilepsy also experience significant stress and are often more overprotective of these children [4], [5], [6]. In fact, a review of the literature suggests that parental negative attitudes toward epilepsy may lead to maladaptive parenting or reduced expectations for the child, and overprotectiveness may be perceived by children as overcontrolling [7].

Together these results suggest that interventions that enhance a child's self-efficacy for managing seizures, promote communication between caregiver and child, and reduce parental stress might promote more positive attitudes toward epilepsy and improve psychosocial outcomes, such as depressive symptoms. These results are most notable for self-efficacy for seizure management in youth with epilepsy and their caregivers. However, a recent critical review by Wagner and Smith [8] indicated that only a handful of studies have examined the effectiveness of psychological interventions for children with epilepsy and their families, and many of these studies were not empirically or theory based, had design flaws, and had small sample sizes. Only two of the studies reviewed have focused on self-management intervention [9], [10]. Several studies have been published since the Wagner and Smith review, including a karate program [11], two educational interventions [12], [13], and a cognitive-behavioral intervention for youth with depressive symptoms [14]. None of these programs have combined cognitive-behavioral skill building with specific self-management behaviors for epilepsy.

Thus, the aim of this study was to pilot test an intervention based on empirically supported cognitive-behavioral techniques [15] and theory-driven self-management content [16], [17] that is focused on enhancing coping skills, self-efficacy, and self-management to promote resilience in youth with epilepsy and their caregivers.