Abstracts

Rationale: Children with epilepsy have an increased prevalence of comorbid behavioral problems, learning disabilities, and mental illnesses (BLMI challenges) compared to their peers. Studies show that these comorbidities have as significant an impact on the child’s functioning as their epilepsy. Caregivers of these children report having significant difficulties accessing care for their BLMI challenges.  However, the likelihood of accessing services is increased if a health professional works with the family to coordinate care.  Our study aims to explore caregiver perspectives on the role of health care providers in the management of BLMI challenges in their children with epilepsy. Methods: Our study recruited caregivers of children ages 6 to 18 years with epilepsy and BLMI comorbidities from the Neurology and Epilepsy clinics at a pediatric tertiary care academic center who had already secured supportive services. Utilizing a conceptual framework to describe how families recognize the need for services and subsequently enter each service to care for their child’s BLMI needs, we conducted one focus group and nineteen semi-structured caregiver interviews to understand the expectations of health care providers in managing BLMI challenges. Qualitative data was coded and analyzed via a web-based mixed method software platform (Dedoose, 8.0.42, SCRC, LLC, Manhattan Beach, CA.) A systematic review of the medical record for demographic data included age, gender, family constellation, epilepsy type, and insurance type was also conducted. Results: We found that caregivers wished their health care providers had provided them with more information about the relationship between the BLMI comorbidities and epilepsy. Caregivers also mentioned that having information about BLMI early in the process of their epilepsy diagnosis would have been beneficial to the help-seeking process. Isolation was a common theme reported by the caregivers in this study.  Many in this study desired to know that BLMI problems were shared by many with an epilepsy diagnosis and wished to be connected with other caregivers experiencing the same issues. Many caregivers felt that many of the resources they used were self-taught or came from caregivers in similar situations or by chance encounter—not from their health care providers. Conclusions:  In this qualitative study, we identified gaps in care for BLMI problems in children with epilepsy from a caregiver’s perspective. Health care providers, including physicians, need to play an active role in educating about the BLMI needs and helping caregivers navigate the available resources. Multidisciplinary epilepsy programs with neuropsychologists and social workers are uniquely positioned to provide assessment, education and referrals to community and supportive resources for the treatment of BLMI problems. Further research will provide the foundation for formal guidelines in educating caregivers and recommending services to care for children with epilepsy and co-morbid BLMI challenges. Funding: Department of Neurology, Boston Children's Hospital