Abstracts

Rationale: The goal of epilepsy treatment includes no seizures, no medication side effects, and the best quality of life. Children with epilepsy have a significantly increased prevalence of behavioral problems, learning disabilities, and mental illnesses (BLMI challenges) compared to their peers. Children with epilepsy are at increased risk for poor health related quality of life particularly due to problems in the domains of emotional, behavioral, social, academic, and family functioning. Our objective is to understand the barriers caregivers experience in obtaining treatment for these neuropsychological comorbidities. Methods: We applied purposive sampling to recruit caregivers of children, aged 6 to 18 years, with epilepsy and BLMI challenges who have already secured supportive services. Caregivers were recruited from the Neurology and Epilepsy outpatient clinics at a pediatric tertiary care academic center. We conducted one focus group and eighteen semi-structured interviews to explore the process caregivers underwent to identify, address, and treat these co-morbid BLMI needs. We performed a systemic review of the medical record for demographic data including age, gender, epilepsy diagnosis, and insurance type. Qualitative data was analyzed to establish thematic content via a web-based mixed method software platform (Dedoose, 8.0.42, SCRC, LLC, Manhattan Beach, CA). Results: Barriers existed at every stage of the help-seeking process to treat BLMI challenges in children with epilepsy. Data revealed caregivers seeking care for these comorbidities experience exceptional difficulty in initiation and implementation of services for their children. Caregivers expressed an “us vs them” mentality, anxiety, and isolation during this process. Additionally, caregivers reported inadequate knowledge of the susceptibility for co-morbid BLMI challenges, lack of knowledge of the process to initiate and maintain an individualized educational plan (IEP), desire for a centralized repository of available resources, substantial time constraints, and financial limitations.  Conclusions: This qualitative research analysis is the first to provide a thematic analysis of the odyssey that families experience in obtaining services and treatment to address co-morbid BLMI challenges in children with epilepsy. Our data suggests that discussion of the connection of epilepsy and BLMI challenges by health care providers early after epilepsy diagnosis is very helpful for families.  Although families had access to early intervention, procuring school services was a major hurdle. Therefore, strengthening the support of resource and educational specialists to help with the navigation of the IEP process and connection to available resources is imperative. Ideal care of children with epilepsy and BLMI needs can only be achieved by creation of an integrated model of epilepsy with resources to support behavioral and educational needs as well as psychological care addressing caregiver emotional support including parent groups. Funding: Department of Neurology, Boston Children's Hospital