Stigma Scale Of Epilepsy: Conceptual Issues

Abstract

Rationale: The term stigma has many associations and implications over the history. According to Goffman (1963), the stigmatized person is considered as having a different characteristic from the ones which are accepted in the society and is treated differently by the community. In epilepsy, the stigma has been considered to be one of the most important factors that have a negative influence on the people with epilepsy and their family. In spite of stigma being a concept quite used today, it is still difficult to measure it. In this context, this study is exploratory towards elaboration of a Stigma Scale. Purpose: To conceptualize main domains involved in epilepsy stigma and its meaning in a context of Latin American culture. Methodology: We performed a comprehensive review on this subject in literature to conceptualize the main domains of epilepsy stigma and these were grouped into a series of open questions in order to define perceptions on these items. The exploratory open questionnaire for community had 16 questions and for patient had 4 additional questions. We applied the questionnaire to 40 consecutive people (20 patients and 20 relatives) from the epilepsy outpatient clinic of HC/UNICAMP. Results: The results were presented by the questionnaires domains: medical, social and personal areas. Medical area: the type of treatment that appeared was medication, exams, surgery and religious approach; meaning of epilepsy: convulsion, head injury, faint or problem in the brain; the causes of epilepsy were traumas, psychological and genetic features. The majority of people had got this information from doctors. Social area: according to subjects, the social difficulties faced by people with epilepsy were related with work, prejudice, school, relationships, driving, freedom, leisure and memory. Personal area: the main feelings highlighted by patients and relatives about epilepsy were sadness, dependence, inferiority, insecurity, fear and pity. Discussion: The results showed that the stigma not only coexists with lack of information, but also with inappropriate behaviors in epilepsy. It provides a base for the closed questionnaire (with categories of answers) and for the process of construction of a stigma scale of epilepsy.104213218Goffman E. Stigma: notes on the management of spoiled identity. New York: Touchstone1963Link, B.G., Stigma and its public health implications (2001) Stigma and global health: Developing a research agendaSttaford, M.C., Scott, R.R., (1986) Stigma deviance and social control: Some conceptual issuesReis R, Meinardi H. ILAE/WHO Out of the Shadows Campaign Stigma: does the flag identify the cargo? 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