'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.
Lived experience
Patient perspectives
Psychosocial aspects
Qualitative research
Transition
Journal
Epilepsy & behavior : E&B
ISSN: 1525-5069
Titre abrégé: Epilepsy Behav
Pays: United States
ID NLM: 100892858
Informations de publication
Date de publication:
09 2021
09 2021
Historique:
received:
15
02
2021
revised:
07
06
2021
accepted:
08
06
2021
pubmed:
17
7
2021
medline:
15
9
2021
entrez:
16
7
2021
Statut:
ppublish
Résumé
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.
Sections du résumé
BACKGROUND
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.
AIM
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.
METHOD
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).
FINDINGS
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.
CONCLUSION
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.
Identifiants
pubmed: 34271324
pii: S1525-5050(21)00428-5
doi: 10.1016/j.yebeh.2021.108168
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
108168Informations de copyright
Copyright © 2021 Elsevier Inc. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.