Development and validation of the Kilifi Stigma Scale for Epilepsy in Kenya

The aim of this study was to develop and validate a tool to measure perceived stigma among people with epilepsy (PWE) in Kilifi, Kenya. We reviewed existing scales that measured stigma, particularly of epilepsy. We conducted a qualitative study to determine salient concerns related to stigma in Kilifi. Themes were generated, and those related to stigma were used to construct an 18-item stigma scale. A descriptive cross-sectional survey was then conducted among 673 PWE to assess the reliability and validity of the scale. Internal consistency was calculated using Cronbach's alpha and test-retest reliability with an interclass correlation coefficient. The final scale had 15 items, which had high internal consistency (Cronbach's α = 0.91) and excellent test-retest reliability (r = 0.92). Factor analysis indicated that the scale was unidimensional with one factor solution explaining 45.8% of the variance. The Kilifi Stigma Scale for Epilepsy is a culturally appropriate measure of stigma with strong psychometric properties.

► We developed and validated a scale to measure perceived stigma in epilepsy. ► The scale was unidimensional: one factor solution explained 45.8% of the variance.► It had high internal consistency and excellent test-retest reliability. ► It can be adapted and validated for use in other research settings.