The relationship between disease concealment, stigmatization, and self-management in adult patients with epilepsy in Turkey

Objective

Patients with epilepsy tend to conceal their disease for fear of stigma. Stigmatization and tendency of epilepsy patients to conceal their illness may make their effective management of the disease and adherence to treatment difficult. Patients should adopt self-management behaviors to avoid being affected by this adverse situation. The aim of the study was to determine the relationship between disease concealment, stigmatization, and self-management in adult patients with epilepsy in Turkey.

Methods

This descriptive and correlational study was conducted at the neurology outpatient clinic a training and research hospital. The sample consisted of 143 patients admitted to the neurology outpatient clinic between May and August 2023. Data were collected using personal information form, Concealment of Epilepsy Scale (CES), Epilepsy Stigma Scale (ESS), and Epilepsy Self-Management Scale (ESMS).

Results

There was a positive correlation between CES and ESS total scores (r = 0.166, p = 0.047). A negative correlation between CES and ESMS total scores (r = -0.182, p = 0.029), and ESMS “seizure management” subscale scores (r = -0.178, p = 0.033). There was a positive correlation between ESS total and ESMS “safety management” subscale scores (r = 0.171, p = 0.042), and a negative correlation between ESS total and ESMS “lifestyle management” subscale scores (r = -0.219, p = 0.009). Participants with epileptic seizures in the last month (ß = 0.174, p < 0.05) felt higher stigmatization, and who were university education graduate (ß = -0.232, p < 0.05) felt lower stigmatization.

Conclusions

Patients with epilepsy who conceal their disease were more likely to feel stigmatized, worse at self-management and managing their seizures. Patients who felt stigmatized were more likely to focus on safety and were worse at maintaining their lifestyles.