The presentation of seizures and epilepsy in YouTube videos

We evaluated videos on the social media website, YouTube, containing references to seizures and epilepsy. Of 100 videos, 28% contained an ictal event, and 25% featured a person with epilepsy recounting his or her personal experience. Videos most commonly fell into categories of Personal Experience/Anecdotal (44%) and Informative/Educational (38%). Fifty-one percent of videos were judged as accurate, and 9% were inaccurate; accuracy was not an applicable attribute in the remainder of the videos. Eighty-five percent of videos were sympathetic towards those with seizures or epilepsy, 9% were neutral, and only 6% were derogatory. Ninety-eight percent of videos were thought to be easily understood by a layperson. The user-generated content on YouTube appears to be more sympathetic and accurate compared to other forms of mass media. We are optimistic that with a shifting ratio towards sympathetic content about epilepsy, the amount of stigma towards epilepsy and seizures will continue to lessen.

► 25% of evaluated YouTube videos about seizures or epilepsy were personal accounts. ► A majority of evaluated YouTube videos were sympathetic towards those with seizures. ► YouTube seizure videos are more sympathetic and accurate compared to other media. ► With more sympathetic media content about epilepsy, the stigma should lessen.