Individuals’ invisible work continues after epilepsy surgery: A qualitative interview study

Abstract

ObjectiveHow do persons with epilepsy (PWE) experience their everyday lives after epilepsy surgery? MethodsQualitative thematic interviews were conducted with eight PWEs (30 to 60 years old). They were recruited when coming for post-operative control 1 to 5 years after epilepsy surgery. The interviews were transcribed. They were analysed by thematic analysis and inspired by Goffman who examines everyday life activities as a theatre play. ResultsBefore surgery, a substantial invisible and hidden work of adjustments was performed to prevent seizures, to secure help from others if seizures occurred, and to protect oneself from others’ gaze during a seizure. This invisible work continued after surgery even for those who became seizure-free; but now for the purpose of protecting oneself from relapse of epilepsy. From the participants perspective there was no or minor change in daily activities among those not becoming seizure-free after surgery. In contrast, those who became seizure-free enjoyed the freedom to participate in social activities without planning or restrictions. ConclusionsA striking finding was that daily life after surgery comprises considerably invisible work to protect a social self, and this preventive and protective invisible work continued, although those who became seizure-free were living an ordinary socially healthy life.