Abstracts

Rationale: Stigma around epilepsy is common, and can impede effective healthcare and social wellbeing for people carrying the diagnosis. Over the past decade the number of internet-users worldwide has increased dramatically, including an increase in the use of social media sites, such as Twitter. Previous work (McNeil et al 2010) suggested that social media perpetuates epilepsy stigma, through an analysis of "seizure" related posts on Twitter in the English language. It is unclear whether this stigma on social media sites extends to other important words (i.e. "epilepsy") or manifests in languages other than English. Initiatives to identify and combat epilepsy stigma may benefit from a more comprehensive understanding of how stigma appears in public spaces online. Methods: We used Twitter, a popular social media website, to further explore how the words "epilepsy" and "seizure" are portrayed by users in French and English. Over a 2-day period, we collected and analyzed tweets using categories developed by McNeil et al 2010. This allowed us to assess common themes and establish categories for epilepsy and seizure related posts ("tweets") on Twitter. In French, epilepsy is "epilepsie" and seizure is "crise d'鰩lepsie." Although the French word "crise" can be translated as seizure, it is used very broadly to mean "attack" or "crisis" or "fit" and is not as closely associated to epilepsy as the English word "seizure". Therefore, "crise d'鰩lepsie" is more accurate (better suited) translation of the word seizure in French. We also characterized tweets as derogatory or not. In this preliminary work, one reviewer categorized all tweets (LR), and a second reviewer examined a sample to develop consensus on category definitions. Results: We reviewed and characterized 800 tweets (400 in the English and 400 in French). The leading categories among English language tweets with the word "seizure" were: Personal Accounts (32%), Movement Analogy (26%), Opinion (8%), Jokes (7%), and Informative (6%). For the word "epilepsy", the categories were: Informative (53%), Personal accounts (15%), and Opinions (13%). 35% of "seizure" tweets were derogatory; 3% of "epilepsy" tweets were derogatory. The leading categories among French language tweets for "crise d'鰩lepsie" were: Movement Analogy (33%), Personal Accounts (44%) and Opinion (8%). For the word "epilepsie" alone, the categories were: Informative (43%), Advice Seeking (10%), and Opinion (10%). In French, 58% of "crise d'鰩lepsie" related tweets were derogetory; 10% of "epilepsie" tweets were derogatory. Conclusions: Our findings suggest there is ongoing epilepsy stigma on Twitter in English and French. Stigma is more closely related to the word "seizure" than to the word "epilepsy" in both languages. Our ongoing work will include an analysis of tweets in multiple additional languages to achieve an improved understanding of how epilepsy and seizures are portrayed through social media internationally. Funding: None.