Levels of stigmatization of patients with previously untreated epilepsy in northern Ecuador

Abstract

As part of a population-based study of epilepsy in northern Ecuador, 215 patients with epilepsy and 125 controls were given a questionnaire designed to elicit the degree of stigma associated with epilepsy. Evidence for stigma was also sought from local medical personnel. 144 patients and 98 controls were questioned again 12 months later at study completion to see whether their perceptions had changed. Both intellectual and physical abilities of people with epilepsy were regarded as low by controls, and this opinion did not change over the study period. Observations by medical personnel also suggested stigmatizing attitudes in the community. The number of patients reporting problems with their marriage or childbearing as a result of their epilepsy did not alter over the 12-month period, unlike their estimates of their own intellectual and physical capacities which had significantly improved. Conversely, although their expectations of employment outside the home had diminished, the reasons stated for this related to continuing epilepsy and not to the objections of fellow workers and employers.