The relationship between disease self-management and internalized stigmatization in individuals with epilepsy: A sample in eastern Turkey

Abstract

Background

Epilepsy is often misunderstood, leading to fear, stigmatization of patients and the risk of social discrimination. For some patients, social stigma can be an even bigger problem than epilepsy itself.

Aim

This study examined the relationship between self-management and internalized stigma levels in individuals diagnosed with epilepsy.

Methods

This descriptive and cross-sectional study was conducted in the Neurology Outpatient Clinic of a Training and Research Hospital and 128 epilepsy patients were included in the sample based on various inclusion criteria such as having a diagnosis of epilepsy for at least six months, being over the age of 18, not having any psychiatric disorder that would prevent reading and comprehension.The Sociodemographic Data Form, Internalized Stigma in Epilepsy Scale, and Epilepsy Self-Management Scale were used to collect the data.

Results

The mean age at disease onset was 19.5 ± 11.7 years. In terms of the demographics of the patients, 55.5 % were female, 46 % were aged 18–22 years, 53.9 % were single, 30 % were at least university graduates, 85.2 % had income equal to their expenses, 75.8 % had a seizure frequency of more than one per year, 58.6 % had generalized onset seizures, and 73.4 % used one drug. The patients’ Self-Management Scale total score was 111.01 ± 13.22, and their Internalized Stigma Scale total score was 49.9 ± 12.9. The correlation analysis indicated a high significant negative correlation between the Self-Management Scale total score and the Internalized Stigma Scale total score (p < 0.001).

Conclusions

The patients’ self-management levels were above average, and their internalized stigma levels were moderate. The patients were most stigmatized in the areas of isolation and discrimination. Generally, as the self-management skills of patients increased, their internalized stigma levels decreased. In this context, it is recommended that intervention studies be conducted to increase the self-management levels and reduce stigma for individuals diagnosed with epilepsy.