Adpating PACES (Program for Active Consumer Engagement in Self-Management) for rural communities
SIP 12-057 Managing Epilepsy Well (MEW) Collaborating Center
The 2003 Living Well with Epilepsy II national conference, 2009 Living Well with Epilepsy Task Force Update and Blue Print for the Future, and US Department of Health & Human Services Healthy People 2020 objectives recognizes epilepsy and disability management issues to include access to medical care, access to health and wellness programs, and psychological distress reduction.
Through collaborative MEW network activity and individual research projects, the University of Washington has, over the past 4 years, identified the role of consumer involvement in sustainable epilepsy self-management program content and delivery, and has collaborated to examine stigma, depression prevention treatment, and the use of e-tools in epilepsy self-management.
The activities under this project are coordinated under the University of Washington Health Promotion Research Center and involve the development and randomized controlled trial of a consumer-driven epilepsy self-management program for rural dwelling adults. This project involves the following activities:
Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Robert Fraser, PhD, about the PACES Trial for Epilepsy- Helping Rural Communities deal with Epilepsy
Listen to the Epilepsy.com Podcast
- Consultation with rural disability researchers and focus group research to identify the ways in which the PACESprogram content and delivery will need to be adapted for use with rural dwelling adults with epilepsy;
- Analysis of the original MEW Needs Assessment survey data relative to rural dwelling respondents; identification of distance-based delivery strategies and long-term follow-up strategies;
- Partnership with the Epilepsy Foundation to include Hope Mentors as program support personnel;
- Execution of a randomized controlled trial of an empirically-based distance self-management program.
Fraser, R.T., Johnson, E.K., Lashley, S., Barber, J., Chaytor, N., Miller, et al. (under review). PACES in Epilepsy: Results of a Self-Management Randomized Controlled Trial. Epilepsia.