Abstracts

Rationale: This project was conducted to assess the outcomes of social media posts on understanding of epilepsy and seizures among users of social media platforms.This project was part of a multi-year Centers for Disease Control and Prevention cooperative agreement. We proposed that an increased understanding of epilepsy and seizures among social media platforms would be found using a qualitative analysis of interactive posts in a 3-month time frame. Wellness and epilepsy self-management-related topics were chosen for use in the study, because feeling comfortable talking about epilepsy is a key step in improving self-efficacy and acceptance of the condition (Pembroke, 2017). Methods: The Epilepsy Foundation regularly posts about epilepsy, challenges, management approaches, and personal stories. For this project, using principles of the trans-theoretical model for behavior change, the number and variety of social media posts about wellness and self-management was increased to create conversations regarding wellness, self-management, and its connection with epilepsy and seizure control. From June-August 2018, the Epilepsy Foundation increased the number of wellness and self-management related posts on its Twitter, Facebook, and Instagram accounts over a three-month period (4 a month in June to 15 a month by the end of August). June 2018 served as a baseline month, with no increase in the number of posts on these topics.Comments on the wellness-related posts were coded using the Patient Activation Measure® (PAM®) as a guiding framework. PAM was used in the coding scheme to help assess whether the post impacted the commenters’ knowledge and application of the material towards their epilepsy self-management. The codes used were DIS (Disengaged and Overwhelmed), AWR (Becoming aware, but still struggling), ACT (Taking action), and MAIN (Maintaining behaviors and pushing forward). Results: Comments were gathered via convenience sampling from Epilepsy Foundation social media posts. In June, 48 individuals commented on posts to discuss self-management related topics. July and August combined saw a total of 67 comments openly talking about the self-management of themselves or their loved ones. When comparing the total number of comments coded at the higher levels of the PAM (AWR, ACT, & MAIN) from June to those from July and August, there was increase of 11.3%. Another interesting finding included an increase in the number of comments coded as DIS. This sample also saw an increase in people willing to discuss epilepsy generally. There were 73 total comments on wellness-related social media posts in June and 158 in July and August combined. Conclusions: The observations of this study conclude that social media is a viable and powerful space for conversations about epilepsy self-management. Conversations may be initially uncomfortable, but ultimately may improve overall comfort in discussing epilepsy and taking steps towards greater patient activation. This shows that more complex conversations and interventions about sustaining epilepsy self-management may be possible on social media, outside of the medical setting. Funding: This program was made possible with funding from the Centers for Disease Control and Prevention (CDC) under cooperative agreement number 1U58DP0026256-03-00, CFDA 93.850. Its contents are solely the responsibility of the authors and do not necessarily represent the views of the CDC.