- Noreen M. Clark, PhD (Principal Investigator)
- Shelley C. Stoll, MPH (Project Manager)
- Arlene Gorelick, MPH (Chair, Expert Advisory Panel)
- Russell Derry, MPH (Community-based Research Associate)
- Emily Youatt (Research Assistant)
SIP 09-11 Managing Epilepsy Well: Network for Epilepsy Self-Management
This study builds upon the findings of Contributing to Managing Epilepsy Well and other research conducted by Network members to develop and pilot a promising self management intervention for adults with refractory epilepsy. The intervention combines skill building for self regulation by people with refractory epilepsy; training for significant individuals providing social support to those with epilepsy; and provision of salient and focused materials and information to both. It is based on the principles of family psychoeducation, self regulation, and regimen-specific social support.
FOCUS on Epilepsy stands for:
Figure out the problem or the issue
Observe your routine
Choose a change goal
Undertake a change strategy
Study the results and select a reward
In a pilot study of the intervention, the Epilepsy Foundation of Michigan and the Center for Managing Chronic Disease recruited from the Detroit Metropolitan area 21pairs of adults with refractory epilepsy and one family member or friend each who is key to his or her social support network. The intervention employs a format that combines a face-to-face retreat for people with epilepsy and their chosen support people followed by a series of telephone sessions to reinforce, practice and reflect upon skills learned. The program is based outside the clinical setting to underscore the central role of individual and family (versus medical care system) in control and decision making regarding epilepsy management. The combination of structured opportunities to improve self regulation skills, social support from a strong community base, and telephone coaching have the potential to significantly affect epilepsy management.
Pilot study findings
A pilot study in preparation for the clinical trial suggested FOCUS is a promising program. Extensive process data confirmed the intervention’s feasibility and high acceptability among participants; for example, nearly all participants indicated that they would recommend the program to others. Despite the small numbers of participants in the pilot (n=19 participants with epilepsy), statistically significant positive changes were found in epilepsy-related quality of life (p=0.008) and a measure of positive affect and well-being (p=0.001). Other outcomes, though not statistically significant, moved in the right direction: depression, healthy days, and epilepsy self-management behaviors.
Qualitative data provided insight into how the program had an impact on participants. For example, a participant with epilepsy said, “I plan to keep moving forward to empowering and taking my life into my hands regardless to how epilepsy has tried to conquer me. I am mine and this program just reassured me of that.” Another said, “Once I started taking care of myself more, I reduced the seizures, was able to do more things that I hadn't been able to. I took a trip by myself to visit some friends and worked this summer.” Participating family and friends also provided insight; an adult son of a woman with epilepsy said, “…the fact that my mother asked me to come (was most rewarding). We made the connection that she wants some support in this. The program helped equip me to support her.”
The pilot participants with epilepsy ranged in age from 22 to 76 (average age: 45); 24% were African American, 67% Caucasian, and 9% more than one race; 43% were male; years diagnosed with epilepsy ranged from 5 to 53 (average: 21); 24% lived alone; 57% had less formal education than a college degree; and 38% were unable to work.
Related MEW publications:
DiIorio C, Bamps Y, Edwards AL, Escoffery C, Thompson NJ, Begley CE, Shegog R, Clark NM, Selwa L, Stoll S, Fraser RT, Ciechanowski P, Johnson EK, Kobau R, Price PH.(2010). The Prevention Research Centers' Managing Epilepsy Well Network. Epilepsy & Behavior. 2010 Sep 22. [Epub ahead of print].
View PubMed Abstract