Pilot study of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: Coping Openly and Personally with Epilepsy (COPE)
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.
Section snippets
Participants
With the assistance of the pediatric epilepsy team at a university medical center, 46 youth were identified as eligible. Children and adolescents aged 10–15 who had been diagnosed with epilepsy (ICD-9 345 codes) for at least 6 months, had at least average intelligence (cognitive ability was confirmed via chart review), had not been diagnosed with a serious mental illness (psychosis, bipolar disorder, or major depression), were not currently being treated for major depression, and lived within an
Results
Fourteen youth aged 10–15 (eight females, six males) and their parents were enrolled in the study and completed pre-assessment measures. At the pre-assessment visit, a joint decision was made by one family and the research team that the intervention was not beneficial for the child. One family voluntarily withdrew after pre-assessment because of a family emergency situation. Two families who completed pre-assessment did not return for the intervention despite our attempts to contact them.
Discussion
Results of this pilot study revealed no significant pre–post treatment differences across most parent and child measures, likely because of a small sample size and weak power. It is, however, notable that parents did rate significant improvements in their children's coping skills related to social support following the COPE intervention. In addition, compared with pre-assessment, knowledge of epilepsy and child-reported self-efficacy significantly improved following the intervention. Though
Acknowledgment
This study was part of the project A Pilot Examination of a Cognitive Behavioral Intervention “Coping Openly and Personally with Epilepsy: A Program for Youth and Caregivers,” funded by Parents Against Childhood Epilepsy.
References (40)
- et al.
Adaptive functioning in children with seizures: impact of maternal anxiety about epilepsy
Epilepsy Behav
(2005) - et al.
Family factors and psychopathology in children with epilepsy: a literature review
Epilepsy Behav
(2005) - et al.
Parenting stress in mothers of children with intractable epilepsy
Epilepsy Behav
(2008) - et al.
Epilepsy and the family: a review of current literature
Seizure
(2000) - et al.
Psychosocial intervention in pediatric epilepsy: a critique of the literature
Epilepsy Behav
(2006) - et al.
Taking charge of epilepsy: the development of a structured psychoeducational group intervention for adolescents with epilepsy and their parents
Epilepsy Behav
(2004) - et al.
A karate program for improving self-concept and quality of life in childhood epilepsy: results of a pilot study
Epilepsy Behav
(2008) - et al.
Famoses: a modular educational program for children with epilepsy and their parents
Epilepsy Behav
(2007) - et al.
Preventing depression in adolescents with epilepsy
Epilepsy Behav
(2006) - et al.
Behavioral, social, and affective factors associated with self-efficacy for self-management among people with epilepsy
Epilepsy Behav
(2006)
Living Well II: a review of progress since 2003
Epilepsy Behav
Impact of pediatric epilepsy: voices from a focus group and implications for public policy change
Epilepsy Behav
Relationship between optimism, disease variables, and health perception and quality of life in individuals with epilepsy
Epilepsy Behav
Consensus statement: the evaluation and treatment of people with epilepsy and affective disorders
Epilepsy Behav
Behavioral and psychiatric comorbidities in pediatric epilepsy: toward an integrative model
Epilepsia
Development of a self-efficacy scale for children and adolescents with epilepsy
Child Health Care
A hopelessness model of depressive symptoms in youth with epilepsy
J Pediatr Psychol
A randomized field trial of ACINDES: a child centered training model for children with chronic illnesses (asthma and epilepsy)
J Urban Health
Continuing psychosocial care needs in children with new-onset epilepsy and their parents
J Neurosci Nurs
Primary and secondary control enhancement training for youth depression: applying the deployment-focused model of treatment development and testing
Cited by (65)
Panic disorder in epilepsy
2024, Epilepsy and Behavior ReportsPediatric epilepsy and psychoeducational interventions: A review of the literature
2021, Epilepsy and BehaviorCitation Excerpt :Additionally, when considering participants who come from lowerincome families, it is essential to address possible recruitment barriers such as caregivers’ lack of transportation, childcare, and time [3,31]. Second and similarly, as many participants reported difficulties continuing to attend sessions due to time, transportation, and childcare constraints, it would be valuable to consider innovative ways to deliver interventions, such as combining face-to-face and electronic methodologies that provide some flexibility to caregivers [3,30,31]. Third, the content of interventions must be not only patient-centered but also family-centered.
Pediatric epilepsy
2020, Adherence and Self-Management in Pediatric Populations