Abstracts

Rationale: A recent study of clinical, academic, and human services professionals providing care to individuals with epilepsy (IWE) indicated a need for theory-based interventions that help adults manage epilepsy and its effects on quality life. Interventions promoting self-regulation have improved health outcomes in other chronic diseases and hold promise for IWE. The FOCUS on Epilepsy intervention integrates self-regulation skill-building with information and social support for IWE and their family members or friends.Methods: The program planning group included behavioral scientists, clinicians, staff from the Epilepsy Foundation of Michigan (EFM), individuals with epilepsy, and a family member of an IWE. Development of the intervention was informed by both the peer-reviewed literature on disease-management programs and the expressed needs of IWE and epilepsy professionals. The 6-week pilot program consisted of a day-long workshop for IWE and their supporters (dyads), followed by regular telephone sessions for each dyad member with a coach. In these calls, IWE and their supporters practiced self-regulation skills by addressing an issue of their choice with guidance from their coach. Participants were recruited via email, web ads, and phone calls to EFM clients. All participants were adults with a seizure in the last year and a support person willing to take part in the program. Participating IWEs completed baseline interviews and will complete 4-month assessments of medication adherence, health care utilization, quality of relationship with their support person, epilepsy self-management behavior, quality of life (QOLIE-10), and depression (PHQ-9). Process evaluation data were collected from participants, telephone session logs, and in-depth interviews with coaches and program facilitators.Results: Of 34 eligible and interested dyads of IWE/support persons, 21 dyads attended the workshop and 19 completed the program. IWE participants ranged from 21 to 76 years of age (mean 45 years); 67.7% Caucasian; 57% female; 75% with education beyond high school. The program was well-received: 100% of IWE participants (and 95% of supporters) found the workshop to be helpful, and 13 of 18 IWE (12 of 16 supporters) would definitely recommend the program to others. Through the process evaluation, strengths and weaknesses of the program were identified by both participants and staff. Several IWE appreciated learning how to break down overwhelming problems into smaller, more manageable goals with the one-on-one support from coaches. Supporters cited greater understanding of epilepsy and a new awareness of ways they can better support their loved one. Conclusions: Process evaluation results indicate that a brief, individual-level intervention focusing on self regulation can be successfully implemented among IWE and their supporters, and is well-received by both groups. The detailed data generated from this pilot will inform future program development and evaluation.