Development and validation of the Epilepsy Self-Stigma Scale.

Area of Science:

• Psychiatry
• Neurology
• Psychological Assessment

Background:

• Self-stigma, the internalization of negative societal attitudes, significantly impacts patients with epilepsy (PWE).
• Elevated self-stigma in PWE is linked to diminished self-esteem and impaired therapeutic engagement.
• There is a need for a reliable tool to quantify self-stigma in PWE to guide interventions.

Purpose of the Study:

• To develop and validate the Epilepsy Self-Stigma Scale (ESSS) for assessing self-stigma in patients with epilepsy.
• To evaluate the psychometric properties, including reliability and validity, of the newly developed ESSS.
• To provide a quantitative measure for exploring factors contributing to self-stigma in PWE.

Main Methods:

• A new scale was constructed using items from an existing stigma scale and prior qualitative research.
• 200 outpatients with epilepsy were recruited from specialized departments in Tokyo and Saitama, Japan.
• Participants completed the ESSS, Rosenberg Self-Esteem Scale (RSES), and Beck Depression Inventory (BDI-II).

Main Results:

• An eight-item ESSS was developed through exploratory factor analysis, identifying three factors: internalization of stigma, societal incomprehension, and confidentiality.
• The ESSS demonstrated high internal consistency (Cronbach's α = 0.76–0.87) and test-retest reliability (r = 0.72–0.90).
• The scale showed significant correlations with RSES and BDI-II, supporting its construct validity, though not with physician assessments.

Conclusions:

• The eight-item ESSS is a reliable and valid instrument for measuring self-stigma in patients with epilepsy.
• The ESSS can facilitate research into the factors associated with self-stigma in PWE.
• This scale can inform the development of targeted interventions to mitigate self-stigma among individuals with epilepsy.