What is the SMART Program for Adults with Epilepsy?

There are many resources and epilepsy support groups and organizations that are designed to help people and adults who have epilepsy. One of the more recent programs I've learned about is SMART (Self-Management for People with Epilepsy and a History of Negative Health Events), a program that was originally developed by researchers at Case Western Reserve University to help adults with “sub-optimally controlled epilepsy, intended to enhance epilepsy self-management in rural/sub-rural populations.” The program is also designed to help veterans and people who are underinsured. Some hospitals may have it available and it’s led by both a nurse educator and peer educator. After an initial in-person meeting, SMART is done online in multiple scheduled virtual group conferences. The purpose of the program includes helping adults with epilepsy “address the challenges imposed by stigmatization, stress and limited social support.”

In my research, I found The National Library of Medicine shows a study that was done with SMART in 2021, covering results, feedback and showing the topics in each session: “Engaging Stakeholders in the Refinement of an Evidence-Based Remotely-Delivered Epilepsy Self-Management Program for Rural Populations. ” It looks like the themes and categories of the program are realistic and practical in the epilepsy community, covering many different categories including epilepsy stigma and stress; comorbid illnesses and memory challenges; medication side-effects and finding the right medication; employability and insurance coverage challenges; access to medications, transportation and healthcare; lack of information about epilepsy; and support like family and friends or care providers.

If you are interested in learning more about SMART, consider checking out the study and talking with your doctor to see if they have it available. There is a lot of useful information and I’m sure you’ll see many ways that you can relate to other people who have done the program. Understandably, stress and epilepsy go hand-in-hand and they noted that “having a strong support system was viewed by PLWE (people living with epilepsy) as the most important facilitator to self-management of epilepsy.” Also, developing a regular sleep schedule and managing anxiety were helpful in “reducing the stress of living with epilepsy.” Seizures triggered by stress and lack of sleep quality are common.

Especially if you have been recently diagnosed with epilepsy, it may be worth your time to ask your healthcare provider if they have the SMART program available. It will educate you in detail about epilepsy and seizures, provide you with practical and useful information and give you advice about how you can make your life easier while adapting to living with epilepsy. Helping you manage epilepsy and the reality of the social stigma can also help improve quality of life.

Written and edited by Amber Kaiser and originally published on the Neureka blog