What is epilepsy self-management?
Self-management in epilepsy can be thought of as both a process and set of behaviors. Most commonly, self-management has been defined as the steps or behaviors people with epilepsy or families use to manage their seizures, treatments and impact of epilepsy on their daily lives. Self-management is a critical part of patient-centered care that is the cornerstone of many epilepsy centers. The IOM report on epilepsy emphasizes the importance of self-management care as part of epilepsy teams, and within community settings.
A few points to consider:
- Most commonly, people think about self-management tasks such as observing and recording seizures, adhering to seizure medications, preventing emergencies, or managing side effects. Yet there is so much more to living with and managing epilepsy. For example, getting good sleep and reducing stress are important self-management behaviors.
- There is also a difference between patient education and self-management. Patient education is about getting and learning new information (e.g., reading about epilepsy in a pamphlet). Self-management requires getting information developing appropriate skills, having access to relevant resources and supports and builds the confidence to implement healthy behaviors to better manage a condition or disorder.
- There are many different components of self-management. Many are similar across chronic diseases, while others may be specific to epilepsy.
- Resources for self-management care can be thought of as those that focus on healthy living and chronic care management and those that are epilepsy-specific.
What is the Managing Epilepsy Well (MEW) Network?
The Managing Epilepsy Well Network (MEW) is a group of epilepsy researchers and epilepsy stakeholders who are working together to develop and test programs that advance the science of epilepsy self-management and improve the quality of life of people with epilepsy or their caregivers.
The MEW Network grew out of the Living Well with Epilepsy Conference in 2003. Current work is building on recommendations from the 2012 Institute of Medicine report, "Epilepsy Across the Spectrum", to increase development and dissemination of tested self-management programs for epilepsy.
Resources for Epilepsy Self-Management
AES Nursing 101: This educational program introduces nurses to epilepsy, including a module on patient/family education and self-management. The module gives an introduction to epilepsy self-management and key areas for education and behavior change that nurses and other providers can utilize in care settings.
MEW Network Programs
The following programs have been developed and tested by the MEW network or participating universities and organizations. More information about the programs, and programs under development can be found at the MEW Network website.
- Contact the MEW Network
- The Epilepsy Foundation disseminates many of these programs under a cooperative agreement with the Centers for Disease Control. For more information, contact Jody Kakacek at 301-918-3722 or via email at firstname.lastname@example.org.
WebEase (Web Epilepsy Awareness Support and Education): An Internet self-management program for adults with epilepsy to help them follow their medication schedule decrease stress, and improve their sleep WebEase can be accessed through the Epilepsy Foundation.
UPLIFT for Epilepsy (Using Practice and Learning to Increase Favorable Thoughts): An Internet and telephone program using cognitive behavioral therapy and mindfulness to treat depression in adults with epilepsy. For more information and training, contact the MEW Network.
PEARLS (Program to Encourage Active Rewarding Lives): A home-based depression treatment program for adults with epilepsy and depression. The program trains mental health professionals to provide the intervention in people’s homes. For information about this program or training opportunities, contact the Pearls Program or the Mew Network.
Promising Self-Management Programs:
Texting 4 Control - A new system for users aged 13 and older with mobile phones that send medication reminders and motivational messages through text messages. This is intended for use by teens and young people with epilepsy. Texting 4 Control can be accessed through the Epilepsy Foundation.
The MEW is funded by the CDC and is supported by special interest project (SIP) 05-07, SIP 07-06, SIP 06-07, SIP 01-08 and SIP 09-11, and Cooperative Agreement Numbers U4 DP000043, U48DP000050, U48DP001901, U48DP001949, 1U48-DP001909.
Texting 4 Control is made possible with funding from the Centers for Disease Control and Prevention (CDC) under cooperative agreement number 1U58DP003832-02. Its content are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.