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Narrative Epileptology: A Discourse Analytical Study of Epilepsy Aimed at Clinical Applicability

Final Report Summary - NARRATIVEPILEPTOLOGY (Narrative Epileptology: A Discourse Analytical Study of Epilepsy Aimed at Clinical Applicability)

Project context and objectives

This project applied the approach of narrative medicine to the field of epileptology and aimed to further interdisciplinary, medical humanistic understanding of epilepsy. The research was structured around two main foci: the first was a theoretical and comparative exploration of contemporary European literary depictions of epilepsy 1880-2010. The researcher compiled a catalogue of about 130 European literary works which engage with depictions of epilepsy. A comparative analysis of this sample yielded the following results:
Notwithstanding ground-breaking discoveries in the fields of epileptogenesis, pharmacology, neurosurgery and electroencephalography in the late 19th and early 20th centuries, a pivotal change in epilepsy narratives takes place only around the 1990s, possibly related to the concurrent development of disability studies. This shift from framing the victimisation and depersonalisation of people with epilepsy to their empowerment is characterised by reclaiming their voice as authentic and authoritative. Today's epilepsy narratives critically engage with the representational legacy of stock figurative devices associated with epilepsy, i.e. epilepsy as a signifier of chaos, as a metaphor of social upheaval and as a trigger for escapist narratives, and with the scopic fascination with the convulsive body.

Project outcomes

Drawing on this analysis, supported by narrative medicine and cultural studies theories, an article on how best to conceptualise narrative epileptology was published in one of the leading peer-reviewed medical journals, The Lancet in February 2011.

Recent epilepsy narratives are conscious of (and thus creatively participative in) current debates about pharmaceutical and surgical treatments of epilepsy. Particularly relevant is the narrativisation of the psychosocial dimension of epilepsy surgery and the metaphors chosen to convey the problematic negotiations between the pre- and post-operative identity of a person with epilepsy. Preliminary conclusions on how literary texts expand our understanding of the psychological impact of epilepsy surgery on patients' lives - especially their complex readjusting to seizure reduction or cessation - were presented at the Medical Humanities Annual Conferences in 2010 in Truro and are the topic of a journal article, currently in preparation.

Epilepsy features prominently in the recent surge in the production of graphic pathographies (illness narratives in comics format). This project has actively engaged with the budding movement of "graphic medicine", which encourages the use of graphic pathographies in medical and patient education as a teaching tool and source of valuable insights into the personal experience of illness. The researcher has contributed to the creation of new discussion platforms for the growing academic community of graphic novels in medicine, by collaborating with a group of international scholars from different disciplinary backgrounds - spanning the humanities and medicine - in the organisation of three conferences on graphic medicine (London 2010, Chicago 2011 and Leeds 2011). Together with two other members of the organising committee, she drafted a proposal for the first book on the use of graphic storytelling in medical and patient education, which is currently under review at a major educational publisher. She has also presented the main findings of this subsection of her project at conferences: the incommunicable aspects of epilepsy call for more complex narrative devices, which often rely on visuality for effectiveness, be it achieved by means of unconventional typographical arrangements or by the interplay of words and images found in graphic novels. Epilepsy narratives and educational booklets, which rely on visual literacy, offer a vast instructive potential for patients with epilepsy, especially children (who have a higher risk of developing learning disabilities) and adolescents (who are seldom offered information materials tailored to their needs, in formats they are familiar with). These preliminary reflections are the topic of a journal article, currently in preparation.

A qualitative study was carried out at the Outpatient Epilepsy Clinic at King's College Hospital London. This aspect of the study is entitled "A Study of Concordance in Outpatient Epilepsy Clinics" and gained NHS Ethics Committee approval. It focuses on how, in the interaction between neurologists/specialist nurses and patients with epilepsy, treatment management is discussed and customised to individual needs in outpatient clinics at King's College Hospital in the context of poor adherence to anti-epilepsy drugs, which is considered to be the main cause of unsuccessful drug treatment for the condition. Data have been collected through audio-recordings of semi-structured interviews with patients and their consultations with neurologists/epilepsy nurse, transcribed and analysed according to conversation analysis conventions and methods. This study will provide new information on, and better knowledge of, clinical interactional practice. It will reveal practices that advance the implementation of concordance in epilepsy care (possibly relating to partnership-building approaches and/or strategies to overcome patient resistance). It will also shed light on approaches that hinder development or maintenance of a therapeutic alliance between doctors and patients (possibly stemming from misunderstandings, misalignments in meanings and/or patient-disempowering approaches to consulting). Anticipated key themes are: acceptance of need of medication, preappointment treatment considerations, decisional ownership and therapeutic alliance building between patient and clinician. Preliminary results have been presented at conferences: they include patients' ambiguous use of pronouns and small stories as discursive predictors of non-adherence.