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Reexamining epilepsy-associated stigma: validation of the Stigma Scale of Epilepsy in Zambia

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Abstract

Purpose

Epilepsy-associated stigma is an important patient-centered outcome, yet quantification remains challenging. Jacoby’s 3-item Stigma Scale is commonly used to assess felt stigma among people with epilepsy (PWE) yet has ceiling effects. The Stigma Scale of Epilepsy (SSE) is a 24-item instrument that measures felt stigma among PWE and stigmatizing attitudes among others. If cross-culturally valid, the SSE may elucidate stigma determinants and provide an outcome measure for interventions.

Methods

We assessed the properties of the SSE in 102 Zambian PWE using exploratory and confirmatory item response theories and compared the latent traits assessed by the SSE to those assessed by Jacoby’s Stigma Scale. Differential item functioning based on forced disclosure of epilepsy was examined.

Results

The SSE yielded two latent traits—the first reflected difficulties faced by PWE; the second reflected emotions associated with epilepsy. Jacoby’s Stigma Scale was associated only with the first latent trait. Forced disclosure was associated with “worry” and “pity” that were associated with the second latent trait.

Conclusions

In Zambian PWE, the SSE captured two latent traits. One trait represents feelings associated with epilepsy, which is theorized as a substantial yet unmeasured part of stigma. The SSE performs well across cultures and may more comprehensively assess felt stigma than other instruments. Further validation is required to determine whether the SSE adequately assesses stigmatizing attitudes among people without epilepsy.

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Acknowledgments

We would like to acknowledge Mr. Julius Mulenga for his contributions in collecting data for this study. The project described was supported by the Fogarty International Center and the National Institute of Neurological Disorders and Stroke (NINDS) under Award Number 1R01NS061693. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. ME was supported in part by an MD/PhD Fellowship from Spectrum Health and the Lois C. Walker Endowed Fund for Student Research in the Michigan State University College of Human Medicine. GB has received research funds from the Dana Foundation as well as travel funds from the World Health Organization. The remaining authors do not have any additional conflicts of interest to disclose.

Ethical standards

All human studies have been approved by the appropriate ethics committees and have therefore been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments.

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Authors and Affiliations

  1. International Neurologic and Psychiatric Epidemiology Program (INPEP), Michigan State University, 909 Fee Road, Room 324, West Fee Hall, East Lansing, MI, 48824, USA

    Melissa A. Elafros

  2. Department of Epidemiology, College of Human Medicine, Michigan State University, East Lansing, MI, USA

    Melissa A. Elafros

  3. Department of Human Development and Family Studies, College of Social Science, Michigan State University, East Lansing, MI, USA

    Ryan P. Bowles

  4. Department of Medicine, University of Zambia, Lusaka, Zambia

    Masharip Atadzhanov

  5. Chainama College of Health Sciences, Lusaka, Zambia

    Edward Mbewe

  6. College of Health Sciences, University of KwaZulu Natal, Durban, South Africa

    Edward Mbewe

  7. Department of Psychiatry, University of Zambia School of Medicine, Lusaka, Zambia

    Alan Haworth

  8. Zambia Ministry of Community Development, Mother and Child Health, Lusaka, Zambia

    Elwyn Chomba

  9. Epilepsy Division, Departments of Neurology and Public Health, University of Rochester, Rochester, NY, USA

    Gretchen L. Birbeck

  10. Chikankata Health Services, Epilepsy Care Team, Mazabuka, Zambia

    Gretchen L. Birbeck

Authors
  1. Melissa A. Elafros
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  2. Ryan P. Bowles
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  3. Masharip Atadzhanov
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  4. Edward Mbewe
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  5. Alan Haworth
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  6. Elwyn Chomba
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  7. Gretchen L. Birbeck
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Corresponding author

Correspondence to Melissa A. Elafros.

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Elafros, M.A., Bowles, R.P., Atadzhanov, M. et al. Reexamining epilepsy-associated stigma: validation of the Stigma Scale of Epilepsy in Zambia. Qual Life Res 24, 1483–1489 (2015). https://doi.org/10.1007/s11136-014-0868-4

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  • DOI: https://doi.org/10.1007/s11136-014-0868-4

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