ABSTRACT
INTRODUCTION:
We aimed to validate the Turkish version of the Stigma Scale of
Epilepsy (SSE) (from
Brazil) and present the results.
METHOD:
The SSE was completed by 33
patients with
epilepsy (PWE), 25 of the
patients'
family members, and 23 people from the
community. Subjects were interviewed on an individual basis; a
physician read the questions and the subjects wrote the answers on a sheet. The form was the same for all subjects. In addition, the Beck
Depression Inventory (BDI) and the Hamilton
Anxiety Inventory (HAI), Short Form-36 (SF-36) were completed by the subjects.
RESULTS:
We interviewed 81 subjects. The internal consistency of the SSE showed Cronbach's α coefficients of 0.785 for the PWE, 0.733 for the
family members and 0.798 for the people in
community. The mean scores on the SSE were 57 for
patients, 66 for
family members and 65 for the
community where a score of 0 would suggest no stigma and 100 would indicate maximum stigma. The SSE scores of
patients,
family members and the
community who believed that
patients with
epilepsy are stigmatized or rejected were higher than the SSE scores of
who did not believe it. Although there were strong correlation between high SSE scores and poor functionality and BDI; there were not any correlation between with SSE and HAI, age of
epilepsy onset,
time of
epilepsy,
education, and
social class.
CONCLUSION:
The SSE has satisfactory content validity and high internal consistency. It allows for the quantification of the real
perception of the
epilepsy associated stigma.
Prejudice and discrimination are often worse than the seizures themselves in terms of the impact on the daily lives of people with
epilepsy and their
families.
Understanding this aspect of
epilepsy is important for reducing the burden of
epilepsy, and the SSE can be used for cross cultural, media, and social campaigns aimed at minimizing the negative influences of stigma.