Contributing to Managing Epilepsy Well

Studies have shown that epilepsy affects all areas of life and, as a result, requires a comprehensive view of self management. People with the condition have been shown to experience physical and psychosocial difficulties, side effects of anticonvulsant drugs, and lifestyle restrictions. High rates of depression and anxiety have been observed among people with epilepsy. Perceived stigmatization can be significant and associated with important self management factors such as self efficacy and medicine use. Managing epilepsy medicines has been shown to be difficult for adults and adolescents, and compliance is poor. Health care services have been posited as not conducive to effective diagnosis or treatment or positioning families to manage the condition well.

In partnership with the Epilepsy Foundation of Michigan, we have been funded by the CDC to research the experiences and effects of self management interventions for epilepsy and other chronic diseases to ultimately suggest an epilepsy self-management research project with a plan for implementing and testing the intervention. In addition to conducting a thorough review of the literature and existing programs to identify chronic disease and epilepsy self- management models, the study reaches beyond the published literature review to identify and study self-management models not in the literature.

We will interview more than 50 program directors of the identified programs to better understand the design, implementation, strengths, and lessons learned for each program. Data gleaned from the interviews will be analyzed using qualitative and quantitative methods, and we will work with an expert panel to identify relevant outcomes with which to assess the models and make recommendations for the implementation and evaluation of one or more promising interventions.

The study is a member of the CDC funded Managing Epilepsy Well Network for Epilepsy Self Management and is a special interest project of the Prevention Research Center of Michigan.

For more information on this project, please contact Shelley Stoll at scstoll@umich.edu.