Abstracts

Rationale: The purpose of this study was to make survey of the patients’ experiences with getting the diagnosis psychogenic non-epileptic seizures (PNES). Methods: The study is based on in-depth interviews of ten patients aged 16-61 years. The patients’ seizures were previously diagnosed as epileptic and treated with antiepileptic drugs (AEDs). At our centre their seizures had been diagnosed as PNES and the AEDs were withdrawn. The empirical material was analyzed by means of systematic text condensing strategies within the interpretative tradition. The theoretical basis of the study was a holistic perspective on healthiness and illness. We have employed Antonovsky’s theory on the concept and measure of the sense of coherence, in particular the idea of locus of control. Furthermore, we used theories on modes of communication between therapist and patient in the verification and communication of a diagnosis. Results: The patients found it hard to understand the PNES diagnosis. When the causes of the seizures were unclear, feelings of hopelessness and helplessness appeared, many experienced an increased level of stress, and they underwent a re-evaluation of self-perception. Sense of control seemed to be decisive when trying to adapt to the diagnosis. The patients described a transfer of responsibility from the health authorities to themselves as the diagnosis was switched from epilepsy to PNES. The patients also felt stigmatized, both from health personnel and the patients with epilepsy. Conclusions: Switching diagnosis from epilepsy to PNES is a demanding process for the patients, both cognitively and emotionally.