Evaluating layered stigma from comorbid HIV and epilepsy among Zambian adults

Melissa A. Elafros*, Joseph C. Gardiner, Izukanji Sikazwe, Jason F. Okulicz, Nigel Paneth, Elwyn Chomba, Gretchen L. Birbeck

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

6 Scopus citations


Background and purpose: Stigma hinders care for patients with neurologic illness. Layered stigma due to comorbid disease is common yet poorly characterized due to lack of instruments. Epilepsy and HIV are prototypical stigmatized conditions widespread in sub-Saharan Africa. Methods: We assessed layered stigma among people with HIV and epilepsy (n = 21), epilepsy only (n = 88), and HIV only (n = 40) in Zambia. Epilepsy-associated stigma was assessed using the Stigma Scale of Epilepsy and Jacoby's Stigma Scale. HIV-related stigma was assessed using the HIV/AIDS Stigma Instrument-People Living with HIV/AIDS and Jacoby's Stigma Scale. Stigma was compared across groups using χ2 tests. Results: 55% (60/109) with epilepsy reported some epilepsy-associated stigma and 20% (12/61) with HIV reported HIV self-stigmatization. Those with HIV and epilepsy were more likely to associate seizures with fear (OR 6.1 [95% CI: 1.3–27.9]) and epilepsy with dependence (OR 4.6 [1.1–19.6]), controlling for age, gender, marital status, and employment. Those with comorbid disease were more likely to report they were “no longer a person” and felt “blamed” for their HIV. Controlling for age and gender, the difference in depersonalization remained (OR: 6.4 [1.1–36.1]). Conclusion: Individuals carrying the burden of one stigmatized condition may be more vulnerable to stigma from a comorbid disease.

Original languageEnglish
Pages (from-to)56-62
Number of pages7
StatePublished - Dec 2018
Externally publishedYes


  • Double stigma
  • Intersectional stigma
  • Resource-limited setting
  • Sub-Saharan Africa
  • Vulnerable populations


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