King's College London

We hope the findings are of interest to people with migraine and epilepsy, particularly those who have received a recent diagnosis. Knowing you can log in online and gain access to the experiences of other people who are doing ok can be reassuring to those still coming to terms with a new diagnosis. It is anticipated that the findings are of interest to charities and clinicians who support people with migraine and epilepsy. Creating online spaces with information for people affected by these conditions, is something described favorably by people involved with our two studies.

After concluding this research, we have some questions left over: (1) How do the benefits that people acquire change over time (2) What are the uses and benefits in people aged under 30?

Who can benefit from this research?

Length of diagnosis is important – In future research, it would be beneficial to talk to people who have received a more recent diagnosis. Their use of new media for help with their condition is likely to be very different to those who have lived with migraine or epilepsy for many years.

The way some people engage with social media over time is likely to evolve – This is partly due to the way the technology evolves, but also internal changes in the way people feel about their health condition.

Including young people with research – This research presents the views of adults, however, the findings would likely be very different if adolescents were asked the same questions.

Changing technology – In the time taken to analyse and publish the research, new social media platforms have become more commonly used and then less commonly used, all within the space of a very short period of time!

Recommendations for future research

Accurate information – This is a key issue for user-groups and the medical profession. If more people are turning to online sources for health information, how this is regulated is essential for the knowledge gathered to be beneficial for patients.

Collaboration – As there are many seeking to help people with migraine and epilepsy, joining forces may help to provide more effective resources.

Recommendations for health services and user groups

Endnotes

1. McKinlay and Ridsdale, “Views of People With Epilepsy About Web-Based Self-Presentation: A Qualitative Study.” ↩
2. Pearson et al., “Not Just a Headache: Qualitative Study About Web-Based Self-Presentation and Social Media Use by People With Migraine.” ↩