Insights into the real-life experiences of people living with epilepsy: A qualitative netnographic study

Abstract

A qualitative netnographic study of epilepsy conversations posted on public social media sites over a 12-month period was conducted in order to identify key themes and issues for people living with epilepsy (PWE). A total of 264,706 conversations posted online between 03 November 2018 and 03 November 2019, which had originated in the UK, Spain, France, Italy, and Germany, were identified using pre-defined and piloted search terms. A random sample of these posts was then analyzed using natural language processing, and qualitative in-depth and contextual analysis. Key themes that emerged related to: disease awareness among the general public; the psychological and physical impact of seizures; the importance of ensuring proper sleep; understanding disease burden through time; finding treatment and managing side effects; and dealing with depression and anxiety. People living with epilepsy highlighted that seizures have a significant impact on mental as well as physical health and can cause limitations to all aspects of life. Fear of having a seizure in public is a major concern for PWE and the anticipation of seizures can worsen anxiety, causing patients to limit social interaction and often leading to social isolation, which may further exacerbate anxiety and depression. People living with epilepsy therefore advocate that greater attention be paid to the mental health impact of epilepsy. Treatment and its side effects were also a major aspect of the online conversation of PWE. Some PWE believe there is a lack of awareness or sensitivity among healthcare professionals, who may underestimate their concerns or not take sufficient time to discuss their needs. These findings therefore help sign-post issues of importance to PWE and areas in which their care may be improved.