Illness representations among people with non-epileptic seizures attending a neuropsychiatry clinic: a qualitative study based on the self-regulation model

A qualitative study was carried out in order to investigate illness representations of people with non-epileptic seizures (NES) in relation to Leventhal's self-regulation or common sense model. Nine participants with NES took part in semi-structured interviews and transcripts were analysed using an approach from interpretative phenomenological analysis. Data were coded according to the five elements of the self-regulation model (identity, cause, time-line, consequences, controllability) and two additional themes. Particularly evident was participants' confusion about their experience, what to call their condition, and its cause. It was therefore difficult for participants to express clear ideas about the time-line of their illness and its control or cure. Also evident was a tendency to categorise illness in dualistic terms as either organic or psychological. There was some dissatisfaction with doctors where ideas about the nature of the illness did not match. It is concluded that a clear idea of illness identity and cause may be necessary for successful management.