Navigating the risks in epilepsy across the lifespan; narratives of adults with epilepsy

Abstract Objective: Epilepsy is generally considered to be a lifelong condition. Consequently, there is likely to be a diverse array of experiences in navigating epilepsy and the associated risks across the lifespan or shifts in perspectives as the person learns to adapt to living with epilepsy over time. It is important to learn about risk from the perspective of those navigating epilepsy risks daily. This study sought to understand the lived experience of epilepsy risk over time from the perspective of those living with the health condition. Method: Eleven people took part in a narrative interview. Narrative analysis was used to identify story summaries, turning points that indicated a change in how epilepsy risk was managed and subject positioning. Findings: Analysis of the eleven narratives revealed five story summaries, three turning points and four subject positions, that described a vast array of shared and individual experiences of managing the risks associated with epilepsy over time. Conclusion: The findings demonstrated how entangled the experience of managing epilepsy risks are in people with epilepsy’s lives. Although some aspects of risk linked with developmental life stages, risk changes were fluid, complex and often an individual experience, entangled among personal, social and cultural contexts. It seems that the risks associated with epilepsy are vast and extend beyond the seizures, with many expressing that they felt there were unheard epilepsy risks, that impacted their personal situations. More research is needed to gather a better understanding of epilepsy risk in wider, diverse and individual contexts.<p></p>

Author dc:creator

• Anika Gordon (21043646)

• Epilepsy
• Narrative
• Lifespan
• Qualitative
• Psychosocial
• Risk

Statement dc:rights

• All rights reserved
• Open Access after 2027-01-15

Identifier

10779/exe.31073344.v1

OAI identifier oai:identifier

oai:figshare.com:article/31073344