ABSTRACT
Introduction: A narrative describing the experience of epilepsy shows how this disorder affects the life of an individual. Epilepsy is a chronic neurological disorder, which affects a person’s mind-set, feelings, and experiences. Epilepsy has an indirect effect on the behaviour of persons with epilepsy (PWE). Existing research does not show how PWE devise their narrative on the disorder or how the disorder itself affects the design of the narrative. I was interested in how the design of the narrative is connected to the individuals’ experience of their social position and their social inclusion. Epilepsy can change the social position of PWE and their experience of social inclusion. This is why I wanted to explore whether epilepsy management is related to PWE’s experience of social inclusion.
Hypotheses: The design of the narrative shows how PWE experience their social inclusion (H1). Successful epilepsy management has an effect on PWE’s experience of social inclusion (H2).
Methods: I took a phenomenological (qualitative) approach to research. Semi-structured interviews were used to collect data on the design (plot) of the narratives. Only persons who had a diagnosis of epilepsy and who were of age were included as study participants. Participants were recruited using snowball sampling technique. This technique is used to reach candidates who might otherwise be difficult to get in contact with. 21 PWE were included in the study. The interviews were recorded with participants’ consent and transcribed. The transcripts were sent to participants for authorisation. Transcripts were analysed and interpreted using content analysis in Word programme. NVivo was used for categorisation and interpretation of data. Two individuals applied the inductive method for coding and categorisation, followed by result interpretation.
Results: The design of narratives showed that PWE center their narrative around an experience (event) in the past, which is not directly connected to an epileptic episode, but rather with PWE's social life. The designs show changes that epilepsy brought to PWE's lives. In all researched designs, these changes address social aspects of PWE's lives. They highlight how PWE lives change with epilepsy, as well as troubles PWE most commonly face in their social lives. Epilepsy management is improved when PWE are included in community activities, have stronger social networks and are less afraid of the future. PWE who are better at managing epilepsy avoid factors that have a potential negative effect on the course of the disorder. They learn how to live with the disorder and regularly incorporate the changes brought on by epilepsy in their daily lives. An important factor affecting PWE's experience of social inclusion is stigma associated with the disorder.
Conclusion: A narrative describing the experience of epilepsy is an indicator of individuals' subjective experience of living with epilepsy. The design of a narrative shows that effects of epilepsy reach beyond the medical field and are related mostly to psychosocial aspects of epilepsy. PWE's management of these aspects presents a challenge greater than the challenge of managing epileptic episodes. The design of narratives are direcly related to PWE's experience of social inclusion. Therefore, raising awareness of epilepsy is one of the key tasks for PWE's full social inclusion.
Keywords: narrative, epilepsy, design of the narrative, social inclusion, disorder management
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