Necessary Steps to Combat Stigma in Epilepsy: Joan K. Austin, PhD, RN, FAAN


The Distinguished Professor Emerita at Indiana University School of Nursing outlined the next steps those in the field of epilepsy need to take to address and tackle this ongoing issue. [WATCH TIME: 3 minutes]

WATCH TIME: 3 minutes

“We really just need to move the field forward to interventions and away from more descriptive work, of just saying, 'What are the problems?'”

Two systematic reviews were recently published following the establishment of the International League Against Epilepsy Task Force on Stigma in Epilepsy, with findings showing a lack of intervention programs to help reduce stigmas for patients with epilepsy. A member of the task force, Joan K. Austin, PhD, RN, FAAN, Distinguished Professor Emerita, Indiana University School of Nursing, spoke with NeurologyLive® on key findings from both reviews, highlighting the need for these programs to take the target audience, patients with epilepsy, into consideration when they are being developed.

Austin further stressed that these programs should not only be educational for patients with epilepsy, but should also be of assistance to their families, professionals, teachers, health care providers, and the general public. By consulting with patients and getting feedback, these can be better tailored to address specific needs, Austin said, which can then be tested in clinical trials. While there are several studies that validate the association of stigma in epilepsy and veritable instruments to determine the association, interventions stand out as an area that is lacking. By developing and testing these programs, she said, there is an overall benefit for those with epilepsy facing stigma in their daily lives.

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. 2022;63(3):573-597. 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. 2022;63(3):598-628. doi:10.1111/epi.17133
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