There is little evidence on how people with epilepsy (PWE) use web-based media in self-management of their condition. This study focused on the benefits/risks for PWE using social networking sites and web-based media.Methods
We recruited 14 PWE who had volunteered after seeing information provided by Epilepsy Action, UK. We asked open-ended questions about online media use. Interviews lasted 60–90 min. Sessions were recorded, transcribed, and thematically analysed using Nvivo.Results
Seven men and seven women participated, age range: 33–73, average diagnosis length was 25 years. Twelve participants used web-based media to gather information about their epilepsy. Seven used apps to manage their epilepsy by logging seizures or medication reminders. Six participants were hesitant to use web-based media due to privacy concerns. Four participants felt that epilepsy was underrepresented or misrepresented online. Three participants preferred traditional sources of epilepsy-related information.Discussion
Results show the value of web-based media in providing information and support to PWE, with the caveat that concerns around privacy and disclosure can undermine potential benefits. Health service providers and advocacy groups can assist by ensuring online information is accurate and up-to-date. Further research may help in developing understanding and future services.