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Peer support groups as an intervention to decrease epilepsy-associated stigma.

Melissa A Elafros1, Julius Mulenga, Edward Mbewe

  • 1Michigan State University, International Neurologic & Psychiatric Epidemiology Program, East Lansing, MI, USA.

Epilepsy & Behavior : E&B
|March 5, 2013
PubMed
Summary

Peer support groups (PSGs) effectively reduced internalized stigma in youth with epilepsy in Zambia. This intervention may offer a low-cost strategy for managing epilepsy-associated stigma in resource-limited settings.

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Area of Science:

  • Global health
  • Psychiatry
  • Neurology

Background:

  • Epilepsy affects 80% of people in low-income countries, where stigma exacerbates social and medical issues.
  • Peer support groups (PSGs) are hypothesized to benefit individuals with stigmatized conditions, but evidence is limited.
  • Epilepsy-associated stigma significantly impacts quality of life and treatment adherence.

Purpose of the Study:

  • To evaluate the effectiveness of monthly peer support groups (PSGs) for people with epilepsy (PWE) in Zambia.
  • To assess the impact of PSGs on internalized stigma, psychiatric morbidity, medication adherence, and community disclosure.
  • To explore the feasibility of PSGs as a low-cost intervention in resource-poor settings.

Main Methods:

  • Facilitated monthly PSG meetings for men, women, and youth over one year in three Zambian clinics.
  • Conducted pre- and post-intervention assessments of internalized stigma, psychiatric morbidity, medication adherence, socioeconomic status, and community disclosure.
  • Analyzed data from 103 participants, comparing outcomes for those attending at least six meetings versus fewer.

Main Results:

  • Among youth attending ≥ 6 meetings, internalized stigma significantly decreased (p<0.02).
  • Adult participants showed a non-significant trend towards reduced stigma.
  • No significant differences were observed in medication use, adherence, or psychiatric morbidity across groups.
  • 80% of participants attended at least six PSG meetings, indicating good engagement.

Conclusions:

  • Peer support groups are effective in reducing internalized stigma among youth with epilepsy.
  • PSGs represent a promising, low-cost intervention for addressing epilepsy-associated stigma in resource-limited environments.
  • Further research is warranted to optimize PSG models for diverse populations and settings.