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Epilepsy, stigma, and family.

Glória Maria Almeida Souza Tedrus1, Renato Buarque Pereira1, Mariana Zoppi2

  • 1School of Medicine, Pontifical Catholic University of Campinas, SP, Brazil.

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|November 12, 2017
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Summary

People with epilepsy (PWE) and their cohabiting relatives (CR) experience significant stigma. This stigma is linked to clinical factors and negatively impacts the quality of life (QoL) for PWE.

Keywords:
Cohabiting relativesEpilepsyStigma

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Area of Science:

  • Neurology
  • Psychiatry
  • Social Sciences

Background:

  • Epilepsy is often accompanied by societal prejudice and stigma.
  • Limited understanding exists regarding the stigma experienced by cohabiting relatives (CR) of people with epilepsy (PWE).

Purpose of the Study:

  • To investigate the relationship between stigma perception in CR and PWE.
  • To explore the association of stigma with clinical aspects of epilepsy and the Quality of Life Inventory (QOLIE-31) in PWE.

Main Methods:

  • Assessed stigma perception using the Stigma Scale of Epilepsy (SSE) in 90 CR and 148 adult PWE.
  • Analyzed correlations between SSE scores, PWE's clinical characteristics (seizure type, duration), and QOLIE-31 scores.
  • Employed t-tests and linear regression models with a significance level of p<0.05.

Main Results:

  • CR's SSE scores were comparable to those of PWE dyads (ICC=0.385, p=0.001).
  • CR of PWE with depressive disorder reported higher stigma (p=0.038).
  • PWE experiencing exclusively generalized seizures (p=0.005), longer disease duration (p=0.002), and higher CR-perceived stigma reported greater personal stigma.
  • High stigma perception was observed in both PWE and CR, correlating with clinical factors.

Conclusions:

  • Both PWE and their CR exhibit high levels of stigma perception.
  • Stigma perception is significantly associated with specific clinical aspects of epilepsy.
  • Elevated stigma in both PWE and CR is linked to a diminished quality of life for PWE.