‘Everything is as before, but nothing is as it was’–A phenomenological-hermeneutic study of meaningfulness in adult patients with refractory epilepsy after interdisciplinary epilepsy rehabilitation

Abstract

BackgroundInterdisciplinary Rehabilitation aimed at adults with refractory epilepsy (RE) establishes scientific evidence of higher health-related QoL, including improved self-worth and increased self-awareness as outcomes. Yet, there is very little research-based knowledge of how life transforms itself after the rehabilitation program from patients’ perspectives. AimThe aim of this study was to identify and describe how – from the patient perspectives - life transforms itself after rehabilitation among adults with RE, focusing on the meaningfulness of interdisciplinary rehabilitation. MethodNine patients, who all completed an Interdisciplinary Rehabilitation Program in an Adult Epilepsy Clinic, were interviewed between six months and two years after rehabilitation. Nine interviews were recorded, transcribed verbatim, and analyzed as described by the phenomenological method ‘Reflective Lifeworld Research’ (RLR). FindingsThe essence of the phenomenon was revealed as life as a struggle for a dignified existence with RE as a navigating life companion. Through the clusters of meaning, four constituents emerged from the phenomenon:1) to accept the limitations of body and mind; 2) to be on a journey toward your inner self; 3) to be quietly understood; 4) to fight for renewed hope and recognition during transition. ConclusionThe patients consider it significant to know their own bodies with the constraints that this involves. This knowledge helps them make decisions that not only have a positive effect on their epilepsy, but also raise their self-esteem and give them renewed hope and courage to face life.However, the struggle for a dignified life is continuously hard, and it comes to a head in patients’ transition from ‘patient to citizen’, where asymmetries arise. These asymmetries leave considerable marks on the patients’ worlds and challenge their renewed hope for a dignified existence.