Psychosocial Factors in the Experience of Epilepsy: A Qualitative Analysis of Narratives

INTRODUCTION: Epilepsy is a complex disease. The consequences of epilepsy are varied and manifested in all aspects of people with epilepsy's (PWE) lives. The purpose of this study was to define individual experiences of epilepsy, expressed in narratives, and to find the stem of each narrative—a core event in the PWE's experience of the disease around which they structure their overall narrative. METHOD: A qualitative, phenomenological research method was used. We conducted semistructured interviews with 22 PWE and analysed the content using a combination of inductive and deductive methods, based on which we determined the stem narratives. RESULTS: The stem narrative of the epilepsy narrative is an important life experience of PWE. We divided the stem narratives into four groups: lifestyle changes, relationship changes, the consequences of the inciting incident, and the limitations of the disease. In our study, we found that the stem narrative was, in all but one case, a secondary (psychosocial) factor resulting from epilepsy, but not its symptom (epileptic seizure). The stem narrative, where aspects of life with epilepsy are exposed, points to a fundamental loss felt by PWE. CONCLUSION: The narrative of the experience of epilepsy has proven to be an important source of information about the disease and life of PWE and also about the aspects at the forefront of life with epilepsy. The secondary epilepsy factors that we identified in the stem narratives were the greatest burden for PWE in all cases but one.