Introduction - Mary O'Brien

Mary, in conjunction with the Centre for Health Research & Evaluation, Edge Hill and the Institute for Health Research, Lancaster University, is conducting a study of the modern day history of Motor Neurone Disease (MND), as part of her PhD research.

The study comprises three elements:

1. The creation of a timeline of developments in the care and management of MND from Charcot's time to the present day, explored through documentary analysis
2. An exploration of the personal experience of living with MND as documented in published and unpublished illness narratives and the effect on the public perception of the disease
3. The motivation of key experts in the field and their influence on the developments that have occurred, obtained through interviews with a selection of world experts on MND

Mary's work stems from her previous work on information needs in MND:

• O'Brien MR (2004) Information-Seeking Behaviour Among People with Motor Neurone Disease. British Journal of Nursing 13(16): 964-968
• O'Brien MR (2004) Healthcare Professionals' Knowledge of Motor Neurone Disease. British Journal of Nursing 13(18): 1080-1084

Personal experiences of living with ALS/MND: illness narratives posted on the Web

Background
Personal illness narratives provide powerful insights into how individuals adjust to and cope with illness. Such narratives can be obtained directly from patients, from traditionally published accounts and more recently from unpublished personal stories posted on the Internet. This extract reports on one part of a study investigating published and unpublished personal illness narratives on ALS/MND.

To date no published work has sought to investigate Internet-based writing about life with ALS/MND or to determine who is using this genre to publicise their illness narratives. Using the Internet as a source for personal narratives presents the researcher with challenges regarding how to track down relevant information and make sense of the volume of potential material available.

Objectives
This extract describes the processes undertaken to locate unpublished personal narratives written by people with ALS/MND posted on the Internet and to identify the characteristics of the authors to establish who is using this medium to tell the story of their illness.

Methods
A systematic electronic search was carried out between January and March 2005 to identify and locate Internet-based narratives written by people with ALS/MND. Numerous search terms were employed to ensure that commonly recognised nomenclatures for the disease were incorporated. Searches were conducted using Internet search and meta search engines, (Google, Dogpile), electronic databases, (e.g. Cinahl, Medline, Web of Science), library collections (COPAC, IOLEC), on-line bookstores and local/national ALS/MND association information sites. This initial scoping exercise was undertaken to gain an understanding of the level and type of unpublished writing about personal experience of living with ALS/MND. At first glance Internet searches indicated large quantities of potential material, closer examination revealed that while some hits did refer to ALS/MND many had little or no link to personal experience of the illness. The general searches of the Internet identified a limited number of useful and verifiable “entry point” sites with personal stories which in turn provided links to additional informational and personal websites. A pathway approach for the search allowed links between sites to be followed up until all links were checked and saturation was apparent. Following the application of inclusion/exclusion criteria 86 sites were accessed, from which personal writings were downloaded, archived and subject to content analysis.

Results

1. Substantially more men (76%) than women (24%) posted personal ALS/MND narratives on the Internet.
2. Although people from a number of countries have written about living with ALS/MND,
   most (80%) Internet based narratives emanate from North America ( USA 59%, Canada 21%).
   Interestingly Australia and New Zealand, with their smaller populations generated the third largest number of narratives. Limiting inclusion of narratives to those written in English or with an English translation may have restricted the number of European narratives available for inclusion.
3. People publishing Internet based narratives about living with ALS/MND came from a variety
   of occupational backgrounds, however not all authors included occupational details. Perhaps
   somewhat surprisingly, the largest occupational group (27%) consisted of manual or unskilled
   workers (e.g. construction worker, truck driver, factory worker, shop assistant), with members
   of the armed forces or emergency services occupying the second largest occupational group
   (19%). While office workers wrote 12% of narratives, professional writers (authors, journalists)
   and academics generated only 8% of narratives, the same proportion as those employed in
   health care professions and creative occupations (film and music industries).
4. Most Internet based narratives did include details of the author’s age at the time of their diagnosis. The youngest author was 20 when given his diagnosis, while the eldest was 67. A majority (54%) of Internet based narratives were written by people who were under 40 at the time of their diagnosis.
5. The experiences reported spanned the decades from the 1960s, but most authors (58%) received their diagnosis during the 1990s.
6. Internet based personal narratives were found on one of three different types of website. Most (55%) were restricted to a single entry in one section within a personal website which also included broader topics including the author’s hobbies and interests, occupational references, family histories and links to other sites. Many narratives (30%) were restricted to a single web page and formed the total content of that page; while ongoing multiple journal entries on personal websites were found on 15% sites.

Conclusion
This novel study demonstrates that researchers can access an invaluable source of personal narratives using a systematic approach and shows the extent to which a cross section of people with ALS/MND have used new technology to publicise their personal stories.