Abstracts

Rationale: Informal and psychosocial support along with material assistance in day to day management of epilepsy is thought to be an important adjunct to conventional treatment. Evaluation of interventions to provide such support is recommended as a high priority in research. The recently piloted FOCUS on Epilepsy intervention is designed to enhance informal support provided to people with epilepsy (PWE) through developing self-regulation skills of a family member or close friend ("supporters"). Methods: The content and processes of "FOCUS" were informed by 1) the peer-reviewed literature, 2) the needs of PWEs, their supporters, and epilepsy professionals as studied by the Epilepsy Foundation of Michigan and the University of Michigan MEW Network team. The program consists of a day-long workshop for PWE and their supporters, followed by telephone sessions for each participant with a coach. In these calls (n=3), supporters develop and practice self-regulation skills. Through the process, they identify how to give stronger and more relevant assistance. Coaches help supporters develop strategies to meet their specific goals for improving the way in which they provide support; for example, using less directive language when communicating with the PWE. Evaluation data were collected from 17 of 19 participating PWEs and 14 of 19 participating supporters via telephone survey. The survey employed closed and open ended items at baseline and four months following program completion. Qualitative data were examined by paired t-test comparing mean scores from baseline to follow-up. Qualitative data were coded for themes and common responses. Results: Supporters were: spouses/partners (9), parents (3), siblings (3), adult children (2), and friends (3). Ages ranged from 23 to 82 (mean=47); 15 (71%) were women; 5 were African American and 15 Caucasian; 5 had a high school education or less; 8 had some college; 8 had a college degree or higher. At follow-up, supporters reported more frequently using self-regulation skills to change how they provided support to their PWE (p=0.01), and most (86%) reported meeting their self regulation goal in full or in part. In qualitative data, consistent themes among supporters were "greater understanding of epilepsy" and "awareness of more effective ways to support their PWE." PWEs also reported improvements, for example, of the 11 PWE who cited something at baseline they would like to change about how their loved one provided support, 9 (82%) indicated positive change at follow-up. Of the 16 supporters interviewed at the completion of the program, 15 (94%) would recommend the program to others. Conclusions: Pilot findings suggest that an intervention focusing on self-regulation can generate important improvements in the ways family members and friends support a PWE. Further evaluation with a larger sample and longer follow-up period is warranted.