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A peer support group intervention to decrease epilepsy-related stigma in an onchocerciasis-endemic area in Mahenge,

Dan Bhwana1, Lies Das2, Joseph Nelson Siewe Fodjo2

  • 1National Institute for Medical Research, Tanga Research Centre, Tanga, Tanzania; Global Health Institute, University of Antwerp, Antwerp, Belgium.

Epilepsy & Behavior : E&B
|November 10, 2021
PubMed
Summary

Peer support groups (PSGs) did not significantly reduce perceived epilepsy stigma in rural Tanzania. Factors like seizure frequency, schooling, and abuse history were linked to higher stigma scores in persons with epilepsy (PWE).

Keywords:
EpilepsyMahengeOnchocerciasis-endemic areaPeer support groupStigmaTanzania

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Area of Science:

  • Neurology
  • Public Health
  • Social Sciences

Background:

  • Epilepsy presents a high burden in sub-Saharan Africa, particularly in onchocerciasis-endemic regions.
  • Persons with epilepsy (PWE) face significant stigma, impacting their quality of life.
  • Peer support groups (PSGs) were implemented in Tanzania to mitigate stigma.

Purpose of the Study:

  • To compare perceived stigma among PWE in villages with and without PSGs.
  • To identify factors associated with higher stigma scores in PWE.
  • To assess the impact of PSGs on epilepsy-related stigma in Mahenge, Tanzania.

Main Methods:

  • A cross-sectional survey was conducted among 161 PWE and caregivers in four rural villages.
  • The Kilifi Stigma Scale for Epilepsy (KSSE) was used to measure perceived stigma.
  • Generalized linear mixed regression models identified factors associated with stigma.

Main Results:

  • No significant difference in mean stigma scores was found between villages with and without PSGs (p=0.537).
  • Higher stigma scores were associated with experiencing more seizures, attending school, and a history of physical abuse.
  • Only 0.6% of PWE reported very high perceived stigma (score > 20).

Conclusions:

  • Perceived epilepsy stigma is a significant public health issue in rural Mahenge.
  • The PSG intervention showed no immediate significant impact on reducing perceived stigma.
  • Further research is needed to evaluate the long-term effects of PSGs on epilepsy stigma.