Discussing Findings From the ILAE Task Force on Stigma in Epilepsy: Joan K. Austin, PhD, RN, FAAN


The Distinguished Professor Emerita at Indiana University School of Nursing spoke on what the task force discovered in a review of literature on stigma from 1985 through 2019. [WATCH TIME: 7 minutes]

WATCH TIME: 7 minutes

“One finding that was surprising is how few studies addressed the development of interventions and programs to combat stigma. You think, 'Okay, stigma is really a big problem in epilepsy, and yet only 30 of the 358 articles in the review addressed interventions.' This is a major gap in the literature.”

The International League Against Epilepsy (ILAE) created a task force to address stigma in epilepsy, including physicians, sociologists, psychologists, and nurses from across the world. Investigators were charged with reviewing the available literature, with no restrictions on region or language, reviewing a total of 4234 papers initially and including 358 papers in the final review.1.2

Joan K. Austin, PhD, RN, FAAN, Distinguished Professor Emerita, Indiana University School of Nursing, sat down with NeurologyLive® to discuss findings, noting that stigma varies across world regions, as well as within those regions. According to Austin—who was a member of the task force, lead author on the first paper evaluating screening instruments and interventions for stigma, and coauthor on the second paper evaluating felt and enacted stigma—other key findings included the consistency of misconception and negative attitudes about epilepsy across different types of respondents. Lack of knowledge and familiarity with epilepsy were also identified as reasons for these perceptions in the general population, while felt stigma was associated with early onset of epilepsy, more recent and frequent seizures, younger age, less education, and lower socioeconomic status, Austin said. When evaluating screening tools, Austin says the task force recommended testing existing tools, rather than creating a new one.

1. Kwon, C, Jacoby A, Ali A, et al. Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy—Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy. Epilepsia. Published online January 5, 2022. doi:10.1111/epi.17135
2. Austin JK, Birbeck G, Parko K, et al. Epilepsy-related stigma and attitudes: Systematic review of screening instruments and interventions - Report by the International League Against Epilepsy Task Force on Stigma in Epilepsy. Epilepsia. Published online January 5, 2022. doi:10.1111/epi.17133
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