UCLA

Drug-resistant epilepsy (DRE) is characterized by fluctuating periods of remission and relapse during which it is easy for the voice of the patient to be overshadowed by a bio-medical focus. Since little is known about perceptions of illness severity in DRE, the purpose of this qualitative dissertation was to explore how a sample of participants perceived their epilepsy and how subjective perceptions of severity shaped the treatment journey. The rationale for the study was influenced by the assumption that the course of disease is impacted by what patients know and believe about the condition. A purposive sample was comprised of 35 participants with DRE of which 16 were undergoing in-patient evaluation for epilepsy surgery and 19 had signed a surgical consent. Constructivist grounded theory was used for data collection and analysis from which four 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”. Our findings revealed that considerations of overall illness severity were arrived at after much inner debate centered around uncertainty, shared suffering and disease burden. Tensions and contradictions were expressed in relation to the impact of unpredictable seizures, yet illness severity was frequently downplayed, and participants found severity was difficult to rate. Pride was taken in coping well, yet acceptance of the epilepsy may also have contributed to a degree of treatment inertia. While epilepsy care felt directionless and life itself was on hold, other medical conditions were thought to be worse than epilepsy. We suggest that severity is a concept that is foundational to shared decision-making in epilepsy, and necessary to the timely execution of therapeutic options. Therefore, study recommendations include the importance of open conversations about illness severity. Nurses specialized in epilepsy care are well positioned to assess and influence patient and family attitudes around severity. A long-term implication includes the development of a practical instrument to assess severity that expands upon existing tools and includes subjective perceptions of illness.