Who is the bigger stigmatizor?: The loved one or the society

Epilepsy has long been considered by the society as a dangerous and frightening spiritual possession or even a contagious disease. This results in an unavoidable embarrassment for both the patient and the family leading to social isolation, seclusion, and secretiveness about the diagnosis. The aim of this study was to determine the stigmatizing level of the general Turkish population and to compare these results with the stigmatizing level of the patients' relatives group (PRG).

This is a substudy of our main study which aimed to develop two scales for the quantification of the stigma level in patients with epilepsy (PWE) and their relatives [Stigma Scale for Epilepsy (SSE) -Self Report (SR) and -Informant Report (IR)]. First-degree relatives of the patients had been included in the main study. For the present study, 202 healthy people who were caregivers and relatives of neurologic patients other than epilepsy were recruited for the control group (CG). A sociodemographic and clinical data form and SSE-IR scale were administered to the CG as well. The relationship between sociodemographic characteristics and SSE-IR scores was evaluated, and a regression analysis was performed in order to analyze sociodemographic factors contributing to SSE-IR scores. Stigmatizing levels were compared between PRG and CG. Statistical analysis was performed using Statistical Package for the Social Sciences version 22.0 software.

Comparison of stigma scores among different sociodemographic strata of the CG showed that there was a statistically significant difference in terms of educational status and occupation (p < 0.01). Multivariate linear regression analysis revealed that education accounted for 10.8% and 8.9% of the variance in the SSE-IR scale respectively in the PRG and the CG. Prejudgment scores and total scores of the PRG were significantly higher than those of the CG. There was no statistically significant difference between two groups in terms of discrimination and false beliefs subscales scores. The proportion of highly stigmatizor participants in the PRG was statistically significantly higher than that of the CG.

This study showed us that the stigmatization levels in a group of subjects drawn from general population without acquaintance of epilepsy were lower than the relatives of the patients. This result may be partially explained by the ambivalent attitudes of the relatives, as those high scores may stem from not only enacted but also the felt stigma that they were experiencing themselves. It must be a warning sign for both of all the clinicians treating epilepsy and national association against epilepsy, as well as public health officials to increase efforts for awareness raising.