Patients' perceptions of living with epilepsy: a phenomenographic study

Aim. The study aimed to describe how patients with epilepsy perceive living with epilepsy. Background. Epilepsy signifies a medical diagnosis as well as a social label. Persons living with epilepsy have more psychosocial problems compared with the general population, and stigma is often experienced. Few studies address patients' life situations as a whole, and there are no studies on how patients perceive living with epilepsy. Design. This was a qualitative interview study where 19 outpatients were purposively chosen and interviewed. Method. A phenomenographic approach was used for interviewing and for analysing the interviews. Results. Living with epilepsy was perceived in two different ways depending on the person's feelings towards the condition. A positive feeling signified 'Living with epilepsy means living a normal life - gaining and maintaining control' with the descriptive categories: 'Accepting the person with epilepsy', 'Taking responsibility' and 'Appreciating the good things'. A negative feeling signified 'Living with epilepsy means living with focus on the condition - conflict and avoidance or resigning to fate' with the descriptive categories: 'Struggling with feelings of stigma, prejudices and loss of control' and 'Giving up hope of recovery, accepting loss of control'. Conclusion. The findings indicate that patients' perceptions of living with epilepsy are closely related to their feelings towards the condition. There is a need for further exploration of the relationship between perceptions of epilepsy as a phenomenon, perceptions of living with epilepsy and feelings related to the condition. Relevance to clinical practice. The findings demonstrated how important feelings and perceptions are to how patients with epilepsy regard themselves. This knowledge is essential for nurses when helping patients to better understand underlying reasons for their reactions to various situations. Forming interventions to help patients with epilepsy to find coping strategies that enhance self-esteem and self-value is another area of relevance.