Online illness narratives about living with motor neurone disease: a quantitative analysis.

Background: To date, no published work has sought to investigate internet-based writing about life with motor neurone disease (amyotrophic lateral sclerosis) or to determine who is using this genre to publicize their illness narratives. Objectives: To identify and locate illness narratives written by people diagnosed with motor neurone disease posted on the Internet and to ascertain who is using this vehicle to tell the story of their illness. Method: Systematic searches were conducted using Internet search and Meta search engines, local and national motor neurone disease association information sites and by following links from personal websites and motor neurone disease chat rooms, newsgroups and forums. Results: Ultimately, 64 personal websites containing illness narratives written by people with motor neurone disease were identified. Demographic details of the authors are presented. Conclusion: This novel study demonstrates that health professionals can access an invaluable source of personal illness narratives from the internet using a systematic approach.