An investigation of stigma and self-management in individuals diagnosed with epilepsy

The complex nature of epilepsy disease confronts individuals with difficulties such as stigma. Stigma has a negative impact, particularly on individuals' coping with the disease. It is important for individuals diagnosed with epilepsy to adopt many self-management behaviors so that they can control these situations. This study aims to measure the stigma and self-management levels of individuals diagnosed with epilepsy and determine the relationship between stigma and self-management.

This descriptive and associational study was conducted in the Neurology Outpatient Clinic of a Training and Research Hospital and 295 patients were included in the sample based on various inclusion criteria such as having a diagnosis of epilepsy for at least six months and not having any psychiatric disorder that would prevent reading and comprehension. Data were collected through the Descriptive Information Form, the Stigma Scale of Epilepsy, and the Epilepsy Self-Management Scale. Data analysis was performed using IBM SPSS Statistics Standard Concurrent User V 26 statistical package program.

The Stigma Scale of Epilepsy total mean score was found 60.62 ± 15.40 in individuals diagnosed with epilepsy. The mean scores for the sub-scales were found 7.08 ± 2.20 for the false beliefs sub-scale, 18.86 ± 4.97 for the discrimination sub-scale, 21.64 ± 7.07 for the social isolation sub-scale, 8.46 ± 3.18 for the inadequacy sub-scale, and 5.45 ± 1.41 for the stigma resistance sub-scale. The ESMS total mean score of individuals diagnosed with epilepsy was found to be 140.54 ± 15.33. The mean scores for the ESMS sub-scales were 44.76 ± 4.29 for the medicine management sub-scale, 20.29 ± 5.98 for the information management sub-scale, 30.49 ± 4.80 for the safety management sub-scale, 23.95 ± 4.34 for the seizure management sub-scale, and 21.02 ± 4.65 for lifestyle management sub-scale. A significant and negative relationship was found between the Epilepsy Self-Management Scale (ESMS) and the Stigma Scale of Epilepsy.

This study found that individuals experienced a moderate level of stigma and had high levels of self-management. Stigma was found to decrease with the increase in the self-management level. In this regard, it is recommended to conduct intervention studies to increase self-management levels and reduce stigma for individuals diagnosed with epilepsy.