The Need to Understand and Tackle Stigma in Epilepsy: Joan K. Austin, PhD, RN, FAAN


The Distinguished Professor Emerita at Indiana University School of Nursing spoke on the prevalence of stigma in the field of epilepsy and how it can affect the daily life of patients. [WATCH TIME: 4 minutes]

WATCH TIME: 4 minutes

“Stigma has long been a concern to people with epilepsy, and our literature review showed that stigma contributes to impaired quality of life in people with epilepsy.”

Stigma can arise as in issue in different facets of life, but it particularly affects patients with chronic illness, specifically for patients with epilepsy, who may face assumptions or judgment associated with their condition. According to Joan K. Austin, PhD, RN, FAAN, Distinguished Professor Emerita at Indiana University School of Nursing, this issue persists for patients with epilepsy of all ages, affecting 5 main areas: school, work, social relationships, marriage, and family.

Austin, who was part of the International League Against Epilepsy Task Force on Stigma in Epilepsy, sat down with NeurologyLive® to speak about the issue following the publication of 2 reviews conducted to address these concerns—the first evaluating felt and enacted stigma and the second doing an analysis of screening instruments and interventions. For children with epilepsy, investigators found that they were likely to report bullying or exclusion at school, while adults with the condition reported hesitancy to report their disease to current or potential employers due to the fear of being overlooked for a promotion or the job in general. Families were also found to conceal the epilepsy diagnosis or withdraw from treatment programs resulting from fears about associated stigma.

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