Abstract
The aim was to describe the patients’ views of the challenges posed by a new diagnosis of epilepsy and their assessment of a nurse intervention. Neurologists in South-East England referred patients into the study. Following a trial of a nurse intervention a subgroup of patients were purposefully identified for in-depth interviews. Transcriptions of tape-recorded interviews were analysed using qualitative methodology. We found that younger people with epilepsy seemed to experience more trouble with driving, jobs and managing their lives in the context of new epilepsy, while older people saw epilepsy as just another illness to cope with. Patients reported difficulty in remembering what their doctors told them which they attributed partly to lack of time available in the consultation. They valued the time, and the technique of probing with explanations used by the nurse. The nurse intervention was seen as useful in making sense of symptoms, tests, risk management, and driving regulations and in helping manage their medicine taking. We conclude that people with newly diagnosed epilepsy face different challenges, some of which are related to their age at diagnosis. Patients reported help from the nurse with understanding the diagnosis, tests, risk management and taking their medication. Follow-up is necessary to measure behavioural effects on self-management in the long run.
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