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of everyone affected by epilepsy

Dr. Markus Reuber, University of Sheffield

Conversational displays of coping resources in clinical encounters between patients with epilepsy and neurologists: a pilot study

Summary

The degree to which epileptic seizures cause a person with epilepsy (PWE) to be disabled is not only explained by the severity or frequency of their seizures but also by their ability to live with them. The ability to deal with adversity is determined by a number of factors including the range of coping methods which the PWE has at their disposal. Some methods are helpful (because they reduce the impact of a problem) others less so. Unhelpful (or “negative”) ways of coping are associated with poor seizure treatment outcomes.

Different ways of coping are usually measured with self-report questionnaires. However, these questionnaires may produce a biased picture because people may find it difficult to judge their preferred coping styles objectively. For this reason, in this study we used Discourse Analysis in order to investigate nine interviews of PWE with their neurologist in order to detect direct references to coping with epilepsy (as narratives about it) but also linguistic and interactional features of the talk which may show how people are coping with their seizures. Our analysis was based on a close study of transcripts of the conversations between PWE and a neurologist.

Topical analysis – We started our analysis by looking at those parts of the transcripts which referred to the topic of coping directly. We found that all patients discussed this topic although the doctor had not specifically asked about it. PWE seemed keen to show that they were in control of their illness and able to lead a normal life. They did this by telling the doctor brief stories about how well they or the people they lived with handled their seizures. Some patients admitted that they had struggled with their seizures initially but that they were coping very well now. Several patients show how easy it is for them to cope with their seizures by talking about the difference between their own seizures and those of other with much more serious forms of epilepsy.

Interactional and linguistic analysis - When we looked more closely at how people talk about their epilepsy, a different picture emerged. Even those PWE who had said that they can lead a normal life despite their epilepsy showed by how they spoke of their seizure disorders that they were more concerned than they were happy to tell the doctor directly. Given that many claimed that epilepsy was no significant problem for them, it was surprising how often and how precisely some PWE described their seizures. Some kept coming back to different seizure experiences although the doctor had not specifically asked them to do so. Others avoided seizure descriptions, using technical terms for seizures, although the doctor asked them to talk of their experiences rather than just using medical labels. Some kept using pronouns instead of naming their seizures (they used words such as “they”, “them”, “it”). Several used metaphors for their seizures that described seizures as attacking the person from the outside or doing things to the person that they could not control or stop.

In summary, the closer analysis of how PWE talk suggests that they were more concerned about their epilepsy and found it harder to cope with it than they said directly to the doctor. It is possible that this observation is explained by the fact that patients feel the need to portray themselves as capable, strong individuals when they talk to a neurologist. This means that doctors have to learn to listen out much better for the more subtle signals patients send out which indicate that they are distressed by their seizures and need more help.

Publication: Monzoni C, Reuber M. Conversational displays of coping resources in clinical encounters between patients with epilepsy and neurologists: a pilot study. (2009) Epilepsy Behav. 2009 Dec;16(4):652-9.

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