Abstracts

Rationale: Children with epilepsy have an increased prevalence of co-morbid behavioral problems, learning disabilities, and mental illnesses (BLMI challenges) compared to their peers. The literature estimates that 32% of children with epilepsy have behavioral disturbances, 26% have cognitive impairment, and 28% have psychiatric disorders. Among children with chronic disease, families of children who have BLMI challenges are more likely to have difficulties accessing care and treatment. Our study aims to understand the process that caregivers experience in obtaining services to address co-morbid BLMI challenges in children with epilepsy at a pediatric tertiary care academic center. Methods: We designed a conceptual framework of the theoretical course families of children with epilepsy and BLMI challenges undergo when seeking care. Based on health behavior and help seeking behavior literature, our outline includes: (1) recognition of the need for services, (2) progression of entry into services, and (3) utilization of services. We then 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 clinics at a pediatric tertiary care academic center. Thus far, we have conducted a focus group and 15 semi-structured interviews to explore the process caregivers underwent to identify, address, and treat these co-morbid needs. Results: Data analysis is ongoing, but thus far, caregivers have identified many helpful resources and obstacles to effective care. Perceived supports include social workers, parent groups, internet resources, and regional or national organizations. Perceived barriers include caregivers’ inadequate knowledge of the susceptibility of the co-morbid burden, knowledge of the process to obtain help and need for self-education, appropriateness of services and quality of the school program, availability of care and treatment, and financial limitations. Conclusions: This is the first qualitative study to provide insight into the odyssey that families experience in obtaining services to address co-morbid BLMI challenges in children with epilepsy. There has been one quantitative study which focused on familial characteristics such as socioeconomic status, parental education, and referral source, but did not provide a dialogue of the actual process. Improving this journey for families is important because these co-morbidities have a deleterious effect on the social outcomes of this vulnerable population. Numerous studies have demonstrated that adults with childhood-onset epilepsy have higher rates than their peers of poor quality of life-related outcomes including attainment of employment, education, and social isolation. Further research will provide the foundation to formal guidelines to address the care for children with epilepsy and co-morbid behavioral problems, learning disabilities, and mental illnesses. Funding: None