Parental perception of FIRES outcomes, emotional states, and social media usage.
Raquel Farias-MoellerAlexandra WoodRachel SawdyJennifer KoopKrisjon OlsonAndreas van BaalenPublished in: Epilepsia open (2021)
Despite their children's significantly impaired functional outcome after FIRES and high rates of medically refractory epilepsy, the cohort demonstrated remarkable emotional resilience. They perceive social media as beneficial, are interested in social media-advertised research, and share valuable advice. Social media may serve as an introductory platform to enhance the physician-scientist-parent/patient relationship.