PAUSE Study Team Connects With Epilepsy Community at Annual Consumer Conference | Illinois Prevention Research Center | University of Illinois at Chicago

The Personalized Internet-Assisted Underserved Self-management of Epilepsy (PAUSE) study team had a successful day at the 7^th Annual Greater Chicago Epilepsy Consumer Conference on November 12^th. People with epilepsy, their families, and other interested individuals attended the free one day event to learn about the latest issues and resources for the epilepsy community. Marie Chesaniuk, a fellow research assistant on the PAUSE study, and I set up a booth to provide attendees with information about PAUSE. We also demonstrated the study tablet for the many booth visitors.  People with epilepsy and their caregivers were eager to share their contact information with us so that we could send them study information and sign them up for the PAUSE study.

At the conference, the people we spoke with valued and benefited from self-management education.

Many caregivers were interested in completing the PAUSE program with their children who have epilepsy. While PAUSE is only available for participants that are 18 years or older, the program could be tailored to children with epilepsy in the future, or to other specific populations.

Dr. Dilip Pandey, the lead investigator of the PAUSE study, also presented at the Conference during a breakout session called “Know about Self-Management of Epilepsy to Navigate the Healthcare System”. Dr. Pandey’s presentation focused on the purpose of self-management, as well as the goals of the PAUSE program and the progress that has been made so far.

The Epilepsy Consumer Conference provided an excellent opportunity to learn more about the self-management needs of people with epilepsy and caregivers in the community.

As the PAUSE study team prepares for recruitment from the Chicago community, it is important to understand community-specific self-management learning needs and interests, as these may differ from the interests and needs of the patients at the UIC Neurology Clinic, where recruitment currently takes place.

More resources for persons with Epilepsy can be found at the Epilepsy Foundation and the Epilepsy Foundation of Greater Chicago.

About the image.   This image is a screen shot from the PAUSE study tablet. The PAUSE study team demonstrated the tablet to persons with epilepsy and their caregivers at the 2016 Greater Chicago Epilepsy Consumer Conference.

ABOUT THE AUTHOR

When Nadia Nabulsi isn’t working on PAUSE or studying for her Master’s in Public Health degree, she enjoys participating in group fitness classes, taking salsa and bachata lessons, playing the piano, painting, volunteering with child mentorship programs, and exploring Chicago!