The MEW Network’s guiding principles for research follow the “Living Well with Epilepsy II”
2003 conference recommendations† and the CDC Epilepsy Program priority areas :
- enhancing the behavioral and social science research of people “living with epilepsy” and self-management of epilepsy
- facilitating the development and testing of self-management models that incorporate critical components for epilepsy
- ensuring that programs recognize the spectrum of epilepsy and tailor content appropriately to people with well-controlled, refractory, and new-onset seizures
- promoting self-management and self-determination principles and programs in the care and services for people with epilepsy
On-going research projects for 2012-4 include:
- Randomized controlled trial of a community-based self management intervention for adults with refractory epilepsy and their support person (Focus on Epilepsy)
- Development and testing of a community-based self-management program for people with epilepsy and cognitive dysfunction(HOBSCOTCH)
- Pilot testing of a clinic-based decision-support system to enhance self-management behavior (MINDSET)
- Adaptation of a consumer generated self-management program for both content and delivery for use with rural dwelling adults with epilepsy (PACES)
- Development of a person-centered, holistic program for people with epilepsy and with severe persistent mental illness (TIME)
- A survey of communication practices and preferences for people with epilepsy and their formal and informal caregivers (TAU)
- Development and evaluation of self-management audio podcasts by people with epilepsy and for people with epilepsy
- Field-testing of a epilepsy self-management measurement scale with people with epilepsy
for the full text of the conference proceedings. Priority recommendations for the self-management section are listed on page 21.
