RATIONALE: The issue of stigmatization is one of the most common psychosocial problems faced by people with epilepsy. PURPOSE: A second step towards the development of a scale to measure epilepsy stigma. METHOD: We applied a closed questionnaire to 12 patients and 32 relatives from the Epilepsy Outpatient Clinic at the University Hospital of Campinas. RESULTS: The results are grouped in three main domains: medical, social and personal areas. Medical: the subjects did not know exactly what epilepsy is or how it is caused; nonetheless they know how to treat it. Social: the most important areas that people with epilepsy are discriminated are at work and social relationships. Patients also complained about their lack of freedom and limits on recreation activities. Personal Area: subjects apparently have the same feelings and thoughts about epilepsy and seizures. CONCLUSION: This study analyzed the most common aspects presented in the questionnaire to assess epilepsy stigma for the Brazilian culture which are the base to the elaboration of a stigma scale of epilepsy.
stigma; epilepsy; scale; quality of life; seizures
