‘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

• Published in: Epilepsy & behavior 2021-09, Vol.122, p.108168-108168, Article 108168
• Main Authors: Moos, Trine Arnam Olsen, Rydahl-Hansen, Susan
• Format: Article
• Language: English
• Subjects: Lived experience; Patient perspectives; Psychosocial aspects; Qualitative research; Transition
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2021.108168

•This phenomenological interview-study uses a Reflective Lifeworld Research approach.•Results: Patients utilize boundary setting as strategy for achieving better epilepsy-control.•Increased body-knowledge raise patients’ self-esteem and give them courage and hope.•Involvement of relatives in rehabilitation is crucial for the life that follows.•Asymmetries in transition determines patient’s scope for actions and possibilities. Interdisciplinary 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. The 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. Nine 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). The 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. The 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.