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People with epilepsy still feel stigmatized.
Oliver Henning1, Charlotte Buer2, Karl O Nakken1
1National Centre for Epilepsy, Division of Clinical Neuroscience, Oslo University Hospital, Oslo, Norway.
Acta Neurologica Scandinavica
|May 7, 2021
Summary
Many people with epilepsy in Norway experience stigma and discrimination, negatively impacting their quality of life. Addressing these issues is crucial for improving well-being in the epilepsy community.
Area of Science:
- Neurology
- Psychiatry
- Public Health
Background:
- Epilepsy is often associated with significant stigma, leading to social isolation, low self-esteem, and reduced quality of life.
- Educational programs in Norway aim to reduce epilepsy-related stigma and shame, enhancing the lives of affected individuals and their families.
Purpose of the Study:
- To investigate the prevalence of self-reported perceived stigma and experienced discrimination among individuals with epilepsy in Norway.
- To assess the impact of stigma and discrimination on the quality of life for people with epilepsy.
Main Methods:
- A web-based questionnaire survey was conducted in Norway.
- Participants provided background and epilepsy-related information, including felt stigmatization and ratings on the Jacoby stigma scale.
Main Results:
- 56% of 1182 respondents reported feeling stigmatized, and 35% experienced discrimination due to epilepsy.
- 70% reported at least one form of perceived or experienced stigma.
- Experienced stigmatization was a significant independent predictor of reduced quality of life, even after controlling for other factors.
Conclusions:
- A substantial number of people with epilepsy in Norway face stigma and discrimination.
- This stigma and discrimination have a detrimental effect on their overall quality of life.
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