Gigi Smith

A population‐based study of risk of epilepsy after hospitalization for traumatic brain injury

Purpose:  This study was undertaken to determine the risk of developing posttraumatic epilepsy (PTE) within 3 years after discharge among a population‐based sample of older adolescents and adults hospitalized with traumatic brain injury (TBI) in South Carolina. It also identifies characteristics related to development of PTE within this population.

Psychosocial factors associated with stigma in adults with epilepsy.

Living Well with Epilepsy II called for further attention to stigma and its impact on people with epilepsy. In response, the South Carolina Health Outcomes Project on Epilepsy (SC HOPE) is examining the relationship between socioeconomic status, epilepsy severity, health care utilization, and quality of life in persons diagnosed with epilepsy. The current analysis quantifies perceived stigma reported by adults with epilepsy in relation to demographic, seizure-related, health, and psychosocial factors. It was found that reported levels of stigma were associated with interactions of seizure worry and employment status, self-efficacy and social support, and quality care and age at seizure onset. This information may be used to target and develop evidence-based interventions for adults with epilepsy at high risk for perceived stigma, as well as to inform epilepsy research in self-management.

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

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 childrens 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.

Prevalence of self-reported epilepsy, health care access, and health behaviors among adults in South Carolina

Behavioral Risk Factor Surveillance System data from South Carolina for 2003-2005 were used to determine epilepsy prevalence and prevalence variation by demographic subgroups, and to compare health insurance coverage, health care visits, and health-related behaviors among persons with epilepsy and the general population. Two percent of respondents reported they had ever been told by a doctor that they had epilepsy, and 1% reported active epilepsy. Almost half of those with active epilepsy reported a seizure in the prior 3 months. More than one-third of respondents with active epilepsy reported that there was a time in the past 12 months when they needed to see a doctor but could not because of cost. Persons with epilepsy were more likely to smoke and have less physical activity. Persons with epilepsy need better access to health care, as well as interventions focused on smoking cessation and increased physical activity.

A Hopelessness Model of Depressive Symptoms in Youth with Epilepsy

OBJECTIVE To test the cognitive diathesis-stress and mediational components of the theory of learned hopelessness in youth with epilepsy. METHODS Seventy-seven participants ages 9-17 (35 girls, 42 boys) completed measures of depressive symptoms, hopelessness, self-efficacy for seizure management, and attitude toward epilepsy. Caregivers provided information on seizure activity. Diagnostic and treatment information was obtained via medical record review. RESULTS Regression analyses revealed that hopelessness mediated the attitude towards epilepsy-depressive symptom relationship. While attitude toward epilepsy and self-efficacy were independent predictors of depressive symptoms, the relationship of attitudes toward epilepsy and depressive symptoms was not enhanced with low self-efficacy for seizure management. CONCLUSIONS Findings support the mediation component of the learned hopelessness theory in youth with epilepsy, suggesting the importance of interventions that assist youth in identifying epilepsy-related aspects of functioning over which they can realistically exercise control and challenging negative thoughts about situations they cannot control.

Feasibility of a pediatric cognitive-behavioral self-management intervention: Coping Openly and Personally with Epilepsy (COPE)

A pilot study was conducted to examine the feasibility and satisfaction of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy (YWE) and caregivers. The Coping Openly and Personally with Epilepsy (COPE) intervention was based on empirically supported cognitive-behavioral techniques and theory driven self-management content. Content of the intervention consists of epilepsy education, primary and secondary coping skills. Children and adolescents ages 10-15, who had been diagnosed with epilepsy for at least six months (ICD-9345 codes), had at least average intelligence, no history of a serious mental illness, were not currently being treated for major depression, and lived within an 80 mile radius were considered eligible. Nine youth and their caregivers completed the COPE program and provided self-report data on feasibility, accuracy, and satisfaction of the COPE program. Caregivers and youth reported a high level of satisfaction with the COPE program, and findings support the feasibility and accuracy of the intervention content and delivery. Results provide a foundation for future randomized, controlled, clinical trials to examine the effectiveness of the COPE program for youth with epilepsy and their caregivers.

Neurodevelopmental and mental health comorbidities in children and adolescents with epilepsy and migraine: a response to identified research gaps

To determine the distribution and risk characteristics of comorbid neurodevelopmental and mental health comorbidities among children and adolescents (6–18y) with epilepsy or migraine (i.e. a neurological condition with shared features and potential etiology) compared with lower extremity fracture (LEF).

Caregiving in pediatric epilepsy: Results of focus groups and implications for research and practice

The process of caring for youth with epilepsy (YWEs) has been understudied. Previous research has identified that caregivers of YWEs report increased parenting stress, unanticipated caregiving responsibilities, and negative effects on family life. Using the adapted Caregiving Process Model, perceptions of the caregiving process were explored in four focus groups of caregivers of youth with epilepsy diagnosed at <1 year, between 1 and 5 years, and >5 years. Thematic analysis guided the data analysis. The prevalent theme that emerged during the data analysis was navigating the noncontingencies (lack of a perceived relationship between action and outcome, unpredictability). This was supported by the subthemes, namely, blessings and sacrifices, uncertainty today and tomorrow, constant vigilance, and caregiving is more than parenting. The focus groups displayed similarities and differences in caregiving perceptions across the three postdiagnosis time periods, providing support for conceptualization of the caregiving as multifactorial, multidirectional, and fluid process. With this knowledge, epilepsy health-care professionals are encouraged to promote patient and family centeredness, provide information on how to access community resources, and work with caregivers to enhance epilepsy self-management skills.

Early screening and identification of psychological comorbidities in pediatric epilepsy is necessary

Youth with epilepsy often have co-occurring psychological symptoms that are due to underlying brain pathology, seizures, and/or antiepileptic drug side effects. The primary study aim was to compare the psychological comorbidities of youth with new-onset epilepsy versus chronic epilepsy. Primary caregivers of youth with either new-onset (n=82; M(age)=9.9±2.9) or chronic epilepsy (n=76; M(age)=12.8±3.3) completed the Behavioral Assessment Scale for Children-2nd Edition. Compared to those with new-onset epilepsy, the chronic group had significantly higher depressive and withdrawal symptoms, as well as lower activities of daily living. A higher proportion of youth with chronic epilepsy exhibited at-risk/clinically elevated depressive symptoms and difficulties with activities of daily living compared to the new-onset group. Proactive screening in youth with epilepsy to ensure timely identification of psychological symptoms and to guide early psychological intervention is warranted.

Self-efficacy for seizure management and youth depressive symptoms: Caregiver and youth perspectives

The aims of this study were to (1) compare caregiver and youth measures of self-efficacy for seizure management (SESM), as well as report of depressive symptoms and suicidal ideation in youth with epilepsy (YWE) and (2) examine the potential relationship between caregiver SESM and caregiver report of depressive symptoms in YWE. Seventy-seven YWE ages 9-17 completed the Childrens Depression Inventory (CDI) and the Seizure Self-Efficacy Scale for Children with Epilepsy (SSES-C). Sixty-five caregivers completed the Behavior Assessment System for Children (BASC-II) and the Epilepsy Self-Efficacy Scale (ESES). Results showed no agreement between youth and caregiver self-efficacy scores. However, there was low to modest agreement in published classifications of depressive symptoms between youth and caregiver ratings of depressive symptoms in youth, with caregivers reporting higher levels of symptoms than the youth reported. Twenty-seven percent of YWE endorsed suicidal ideation. When caregiver report of their own self-efficacy towards their childs seizures and their assessment of their childs depressive symptoms were compared, there was a significant inverse relationship. These findings suggest a multi-informant approach to assessment of depressive symptoms in YWE, the importance of including self-efficacy for seizure management in assessment and treatment of YWE, and provide support for transactional patterns of psychosocial adjustment.