N. Aydemir, B. Kaya, G. Yıldız, İ. Öztura, B. Baklan. Epilepsy & Behavior 58 (2016) 76–80.

Purpose

Epilepsy is a stigmatizing condition in almost every culture. Since stigma is determined by society, how it’s viewed can vary among cultures. This study examines factors that contribute to felt stigma in the Turkish culture. Felt stigma refers to feeling ashamed of the epilepsy or feeling that a person may be discriminated against because of it.

Description of Study

  • 200 adults with epilepsy participated in the study.
    • 103 people were recruited from a neurology department in Turkey
    • 97 people were recruited from the website of the Turkish Epilepsy Association.
  • Questionnaires, previously developed for use in Turkey, examined four aspects that can be associated with stigma including:
    • felt stigma
    • concealment of epilepsy - hiding or concealing epilepsy from family and others
    • concerns about epilepsy affecting future work, social life, marriage and having children
    • overprotection - perceived family overprotection of person with epilepsy

Summary of Study Findings

  • In Turkey, as in other cultures, significant psychosocial concerns affect people with epilepsy, including felt stigma, perceived need to hide epilepsy from others, issues related to work, social relationships, marriage, and having children.
  • Almost half of the people reported high levels of felt stigma. Reports of feeling overprotected, concealing epilepsy, and concerns related to social life and future work were associated with felt stigma.
  • Almost 1 in 3 people reported concerns related to marriage and having children.
  • Concerns regarding future occupation were higher in men than women.
  • The number of seizures a person had was not associated with presence of stigma.
    • Concealing or hiding epilepsy was most strongly related to felt stigma.
  • Most people reported high levels of perceived overprotection by families. This overprotection did not influence or predict whether people felt stigma.

What does this mean?

  • While stigma appears to occur in all cultures, its causes may vary.
  • This study suggests that overprotection was less likely to predict felt stigma in Turkey, despite the fact that more than half of the participants reported overprotection. The authors indicate that this could be due to the nature of Turkish society that accepts overprotection as a normal behavior.
  • Although other studies have focused on the correlation of depression, epilepsy-related variables, and anxiety with felt stigma, this study indicates that social concerns, especially related to social life and to future occupation, should be taken into account when examining stigma. Specific culturally-defined concerns may be correlated with and even be a cause of felt stigma and may vary from country to country.
  • Since culturally-specific factors contribute to felt stigma, effective treatment should address these specific factors. No single approach will be effective in helping people with epilepsy to live well with epilepsy.

Article published in Epilepsy & Behavior, May 2016.

Authored By: 
Paul M. Levisohn MD | Member | Epilepsy Foundation Professional Advisory Board
Authored Date: 
05/2016
Reviewed By: 
Christianne N. Heck MD, MMM
on: 
Tuesday, May 31, 2016