Abstracts

Rationale: The aim of this qualitative study is to gain understanding of how a sample of patients perceived the severity of their focal drug-resistant epilepsy (DRE) and why they withstand lengthy delays before seeking specialized epilepsy care. Qualitative research compliments cross-sectional quantitative approaches that tend to overlook subjective illness experiences.  Methods: Personal interviews lasting an average of 91 minutes were conducted with 35 adults with DRE during an in-patient evaluation for epilepsy surgery (n=16) or in a separate group after a surgical consent had been signed (n=19). Constructivist grounded theory methodology guided all qualitative data collection and analysis. Process coding, collaborative analysis, and engagement in reflexivity through memo-writing was done to reduce interpretive bias and to enhance the development of analytic categories based on coded data.  Results: Participants were mostly female (57%), ethnically diverse, with a mean age of 35.6 years (range 18-68) and an average duration of epilepsy of 15.4 years. Four interrelated analytic categories were developed: 1) “Epilepsy is an uphill thing”, 2) “It’s just not knowing”, 3) “Waving the white flag” and 4) “Battling with myself.” Results showed that participants’ notions of illness severity were not automatically drawn, and perceptions about severity varied based on many factors. The words of participants reflected many contradictions around uncertainty, personal and family suffering, and disease burden. A sense of pride was expressed in coping well with unpredictable seizures that occurred over many years, yet this also contributed to treatment inertia. Some participants felt their epilepsy care was directionless and thus life itself was on hold; for them, other medical conditions were thought to be worse than epilepsy. Overall, participants frequently downplayed and found it difficult to rate illness severity.   Conclusions: Perceptions of illness severity have the potential to impact decision-making in epilepsy. However, patients may need support to explore the meaning of the severity of their epilepsy so they can consider well-timed therapeutic options. Future implications of this study include development of a comprehensive tool to measure perceptions of disease severity as an aid to help patients gain clarity and assist with decision making.  Funding: Robert Wood Johnson Foundation, Future of Nursing Scholars program.