Development and validation of the stigma scale for epilepsy in Turkey

Epilepsy is a chronic disease with an increased risk of stigma. The aim of this study was to investigate the efficacy of a scale developed by the authors to determine the level of stigma in Turkish patients with epilepsy and their relatives.

In this pilot study, two scales were developed, one consisting of 32 questions for the patients and one of 20 questions for the patients' relatives. Initially, a total of 30 patients with epilepsy and 30 relatives of the patients were included. The Cronbach's alpha coefficient was calculated in a reliability analysis of validity applying the scales to 302 patients and 201 relatives of the patients. The Pearson correlation coefficient was used for the reliability analysis of the test-retest. The t-test was used in paired series, and factor analysis was conducted. The correlation between the clinical and demographical data and the stigma scores was evaluated.

The scales were applied to participants twice under the same conditions in one-week interval. In the test-retest analysis, the internal consistency of the scales was high and reliable. In the analysis of the patients, the Cronbach's alpha value of the scale was found to be 0.915. In the factor analysis, the questions were grouped into five factors including social isolation, discrimination, insufficiency, false beliefs, and stigma resistance. The factors with the highest contribution to the stigma level were social isolation and discrimination. In the stigma scores, a significant correlation was found between the age of the patient, frequency of seizures, education status, level of income, and the amount of antiepileptic drugs used. In the analysis of the patients' relatives, the Cronbach's alpha value of the scale was found to be 0.892. In the factor analysis, the questions were classified as discrimination, prejudgments, and false beliefs. The factor which most contributed to the stigma level was discrimination. A significant correlation was found in the stigma scores between sex, education status, marital status, and income distribution.

According to our study results, it is clearly seen that both patients and their relatives suffer from epilepsy-associated stigma. Patients with epilepsy and their relatives are faced with discrimination in society, resulting in social isolation. We, therefore, believe that both patients and their relatives should be informed in detail about discrimination to overcome this challenge.