Over the last few weeks I have been travelling the country interviewing volunteers about their social media usage. At the moment I am talking to people who have epilepsy, a condition that affects around 1 in 100 people in the UK. The research is being undertaken in partnership with neurologist Leone Ridsdale and Epilepsy Action, the UK’s largest epilepsy user group.
I have been asking our volunteers questions about their habits online and how they conceive of their identity in an online environment. Questions like:
Do they use any apps to help them manage medication or record symptoms? Have they ever used a forum to get or share advice about their epilepsy?
Do they tell people on Facebook they have epilepsy?
Do they follow epilepsy charity Twitter feeds?
We are hoping that the interviews will help us to learn more about how people with long-term neurological conditions use social media and how it affects them.
We have two main goals:
1. We hope that this research will help us to improve resources around epilepsy for both people with the condition and the wider community
2. Building on the earlier scholarship of Jeanette Stirling, Lisa Cartwright and others, we want to explore how epilepsy is culturally represented now, in the digital age.
If you would like to know more about epilepsy and living with the condition, our research partner Epilepsy Action has some excellent factsheets.
More to follow…