Abstracts

Rationale: This CDC-funded study identified epilepsy self-management (ESM) barriers and facilitators to inform future epilepsy self-management interventions in a traditionally difficult to reach population, persons with both epilepsy and mental illness (E-MI). Building on previous work in chronic disease self-management, research and clinical care in epilepsy, and work with underserved community groups we utilized an iterative, collaborative process to solicit feedback from a diverse group of patients and other stakeholders. Methods: Focus group methods were used in a series of community advisory board (CAB) meetings to collect data on barriers and facilitators to ESM from persons with E-MI, their family members and other stakeholders. Moderator and facilitator guided focus group discussions used a semi-structured interview guide, which was designed to elicit participant viewpoints on factors relevant to persons living with both epilepsy and mental illness. Three sequential group sessions were audio-recorded and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach and qualitative data analysis software. Results: There were 11 people in the CAB meetings including 5 community health professionals, 4 patients with epilepsy and a mental illness, and 2 care partners (1 partner, 1 wife). Mean age was 51.3 (SD=12.7, range 32-69), 6 (54.5%) were female, and 5 (45.5%) were male. Mean years with epilepsy was 31.8 (SD=23.9, range 10-58 years). Mean duration of mental illness was 10.8 years (SD=10.2, range 1-25 years). Barriers and facilitators discussed were classified into a three-part taxonomy: individual, family and community, and health care services. Psychological barriers were among the most prominent barriers and included the myriad ways in which mental illness can interfere with ESM health behaviors as well as fatigue, frustration and psychological distress. Cognitive and functional impairment were also described as important individual-level barriers. Community and family barriers included stigma, lack of knowledge about epilepsy, inadequate transportation and a lack of social support. Barriers to health care services were also identified as having a salient influence on ESM. Participants identified a variety of facilitators including planning for seizures, learning about medications, stress management, and socializing with others and talking with other people who have epilepsy. Peer support and patient empowerment were also highlighted as key ingredients in effective ESM. Conclusions: Active self-management is crucial in maintaining health among persons with E-MI. Individuals with low trust in providers and those who experience frustration, stigma and low social support may be less likely to effectively self-manage. Participants in our sample reported a number of strategies that can be used to combat social isolation and manage their health. Support from the health care team and the community is instrumental in helping persons with E-MI follow through with health behavior recommendations.