Abstracts

Rationale: New media platforms such as YouTube and Twitter are increasingly important in popular culture. Prior studies noted that nearly all forms of traditional popular media presented seizures in a dramatized or negative manner. Social media on the Internet appears to follow a similar practice. Tweets referencing seizures or epilepsy on Twitter are often derogatory. Similarly, comments on YouTube videos referencing seizures or epilepsy are frequently negative. User generated content such as YouTube videos represent an important source of public exposure to seizures. The ease of production ensures that persons with epilepsy may share their unfiltered personal accounts, in stark contrast to traditional media. We hypothesize that this user-generated format may yield content that is more sympathetic towards those with epilepsy relative to prior forms of media. Methods: A search was performed in YouTube using the terms "epilepsy" and "seizures." Two independent reviewers analyzed 100 YouTube videos. Reviewers assigned each video to one of eight descriptive categories: Personal Experience / Anecdotal, Advice-Seeking, Informative / Educational; Advertisement, Opinion, Entertainment / Popular Culture, Joke / Ridicule, and Oblique Reference. The content of each video was also rated on scales assessing the accuracy of information regarding seizures or epilepsy, the overall positive (sympathetic) or negative (derogatory) impression suggested by the video regarding seizures or epilepsy, and the difficulty level of the video. Results: 28% videos contained an ictal event. 25% featured a person with epilepsy recounting personal experience. The most common categories were Personal Experience/Anecdotal (44%) and Informative/Educational (38%). In rating accuracy, 51% of videos were judged as accurate, and only 9% inaccurate; accuracy was not an applicable attribute in the remainder of videos. In rating attitude, 85% of videos were sympathetic, 9% neutral, and only 6% derogatory. Only 2% of videos containing undefined technical language while 98% of videos were thought to be easily understood by the layperson. Conclusions: Our study suggests a more positive portrayal of epilepsy than seen in traditional media. With the increasing prominence of user-generated content, allowing for those with epilepsy to post personal accounts by uploading videos for public consumption, sources such as YouTube appear to be more accurate and sympathetic while being more accessible than traditional media. To our knowledge, this is the first study describing the presentation and classification of seizure and epilepsy videos on YouTube. 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.