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Individuals' invisible work continues after epilepsy surgery: A qualitative interview study
Helene Myklebust Letén1, Hilde Nordahl Karterud1, Anne Marit Mengshoel2
1National Centre for Epilepsy (SSE), Neurological clinic, Oslo University Hospital, Norway.
Epilepsy Research
|December 15, 2023
Summary
Epilepsy surgery patients engage in significant invisible work to protect their social selves, even after becoming seizure-free. This ongoing effort aims to prevent relapse and maintain a socially healthy life.
Area of Science:
- Neurology
- Psychology
- Sociology
Background:
- Epilepsy surgery aims to improve quality of life for persons with epilepsy (PWE).
- Understanding the lived experiences of PWE post-surgery is crucial for holistic care.
- Previous research has focused on seizure control, with less emphasis on daily life adjustments.
Purpose of the Study:
- To explore the everyday experiences of persons with epilepsy (PWE) following epilepsy surgery.
- To understand the psychosocial adjustments and challenges faced by PWE post-operatively.
- To investigate the concept of 'invisible work' in the context of living with epilepsy after surgery.
Main Methods:
- Qualitative thematic interviews conducted with eight PWEs (30-60 years old).
- Participants were recruited 1-5 years post-epilepsy surgery.
- Thematic analysis inspired by Goffman's dramaturgical perspective on social interaction.
Main Results:
- PWE performed substantial 'invisible work' pre-surgery to manage seizures and social perception.
- This invisible work continued post-surgery, focusing on preventing relapse, even in seizure-free individuals.
- Seizure-free participants experienced enhanced social participation without prior restrictions, while others reported minimal changes.
Conclusions:
- Daily life post-epilepsy surgery involves significant invisible work to protect one's social identity.
- This protective work persists even for individuals who achieve seizure freedom.
- Epilepsy surgery impacts social well-being through continued, albeit modified, self-protective strategies.
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