Living with epilepsy: meanings constructed by people with the disease

Objective: To reveal the meanings that people with epilepsy construct about disease and to describe the repercussions in several realms of their lives. Methodology: Grounded Theory tools with semi-structured interview technique were used, which was conducted with a total of 25 patients diagnosed with epilepsy, prior informed consent. Results were returned and validated with participants using a focus group and dissemination activities. Results:The following three categories emerged from the study: The person, The suffering, and The coping strategies. For patients, the suffering meant a drawback in several contexts. The person struggles to overcome suffering and to extricate it from his/her life. Fear was a standing and cross-cutting emotion in disease sufferers. Cognition and rationalization were coping mechanisms that must take on a new meaning in order to go beyond the therapeutic adherence. These results can be applied in similar situations of chronic diseases, particularly, in the mental health field. Conclusions: People cope with the disease by means of reflection and cognition processes. This is expected to be considered as contribution for health services, social programs, people, and their families. Descriptors: Epilepsy; Chronic Disease; Nursing Care (source: decs, bireme)