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

Caroline K. Mbuba, Amina Abubakar, Peter Odermatt, Charles R. Newton, Julie A. Carter

Research output: Contribution to journalArticlepeer-review

57 Citations (Scopus)


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.

Original languageEnglish
Pages (from-to)81-85
Number of pages5
JournalEpilepsy and Behavior
Issue number1
Publication statusPublished - May 2012
Externally publishedYes


  • Epilepsy
  • Kenya
  • Stigma scale
  • Tool development
  • Validation


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