Narrative analysis of written accounts about living with epileptic or psychogenic nonepileptic seizures

Abstract

This study is based on a narrative analysis of individuals' written accounts of living with epilepsy (n = 29) or psychogenic non-epileptic seizures (n = 20, PNES). Narrative analysis looks at both the content and structure of the personal account. We used a form of narrative analysis that allowed us to identify common story lines, otherwise known as narrative typologies, potentially characteristic of these patient groups. Different narrative typologies were described and compared between writers with the two conditions. Methods: As part of a therapeutic writing intervention for individuals living with a seizure disorder, participants were asked to write for at least 20 min about their very deepest thoughts and feelings about their condition. Results: Five narrative typologies emerged: 1. 'Losses from Illness'stories were dominated by events individuals could no longer do, authors appeared more disabled reporting greater frequency of seizures and lower health-related quality of life. 2.'Feeling Lost'participants appeared to be in search of something and expressed uncertainty. 3.'Tackling Adversity'individuals strove to not let their condition stop them from living their life. 4.'Overcoming Challenges'stories reflected that the condition must be battled and fought with. 5.'A Normal Life'individuals had demonstrated that they are managing to live with their condition. Conclusions: While the 'Tackling Adversity' typology was preferentially used by writers with epilepsy, the 'Feeling Lost' typology was chosen more commonly by those with PNES. People with epilepsy narrate their disorder differently from those with PNES, suggesting that they have different life and illness experiences.

Neurology specialists’ visual interpretation of psychogenic nonepileptic seizures: Contemplating their etiology and existing challenges

“…Here emerges the fact that the patient's willingness and ability to take part in future procedures is essential. While some patients express the intent to seek professional help and "fight" the disorder, others might feel lost, powerless or accept their presumable lack of control over PNES [38]. Finally, factors like psychiatric comorbidities, lack of motivation or an avoidant coping style could lead to high levels of non-adherence [39][40][41][42][43].…”

“…Physicians may believe that driving should be restricted in PNES as in the case of epilepsy, further limiting patient independence [49]. Besides, patients living with PNES might themselves associate their condition with personal losses or having to strive for being an appreciated member of society [38]. This, in turn, can lead to feelings of entrapment, social isolation and potentially worsen the course of PNES, which are strongly linked to psychosocial factors.…”

Catastrophising and repetitive negative thinking tendencies in patients with psychogenic non-epileptic seizures or epilepsy

“…The correlation between PTQ scores and mSBCS, and the moderate correlation between PTQ and seizure frequency may suggest some repetitive thoughts relate to seizure activity, though this is only an inference. Previous qualitative studies comparing reported experiences of PWPNES and PWE provide some initial insights, but no studies have focussed on the content of repetitive thoughts specifically [43,44]. The identification of themes for RNT would be an interesting focus for future research and could help better to specify targets for psychological therapies.…”

Perceptions in PNES: A Bidirectional Problem

“…There is interesting work emerging from the study of qualitative communication patterns between patients and HCPs showing distinct patterns between PNES and epilepsy. 7,8 In addition, conversations between HCPs and patients with PNES can involve language that inadvertently distances or even alienates patients, with words revealing HCP beliefs or biases 9 such as telling patients they don’t have “real seizures,” “everything is normal,” or that “nothing is wrong” despite the patient feeling physically quite unwell and unable to function. Studies also show that physicians use ambiguous words within their notes that imply a less than certain diagnosis which can lead patients to search for more opinions.…”