People with ALS/MND as authors: who is writing about life with ALS/MND

M. O'Brien, D. Clark

    Research output: Contribution to conferencePoster


    Background: Health professionals are increasingly recognizing the value of illness narratives to inform them about the personal experiences of living with illness. Illness narratives are obtained directly from patients during interviews, or from their writing published in print medium or posted electronically on the internet. To date no published work has sought to investigate the use of illness narratives by people with ALS/MND. Objectives: To identify published and unpublished illness narratives written by people with ALS/MND and compare the genres to establish the characteristics of the authors. Method: A comprehensive search strategy was adopted to identify and locate electronic and print medium narratives written by people with ALS/MND. Following this scoping exercise, identified literature was assessed according to inclusion/exclusion criteria to obtain a comprehensive sample of 152 narratives (88 print narratives, 64 electronic narratives) to subject to analysis. Demographic details including sex, geographical location of author, occupation, age at diagnosis, decade of diagnosis and publication were recorded where available and comparisons made across the genres. Results: Men wrote more than 60% of all narratives and within each genre produced more illness narratives than women. Although people from a number of countries worldwide have written about their illness experiences, over 60% of all narratives emanate from the USA. People from a wide variety of occupational backgrounds documented their illness experiences; 62% of authors specified their occupation. Twenty-five per cent of print medium accounts were written by professional writers (academics/ journalists); people in office-based occupations (supervisor/ clerical) wrote 21% and management/business people wrote 16% of printed narratives. Electronic narratives, in contrast, were dominated by writings from unskilled/ manual workers and members of the emergency services/ armed forces, who each produced 16% of the internet material. The author’s age at diagnosis was included in 55% of all narratives (range 20–76 years); those aged under 40 years of age at the time of their diagnosis produced more electronic (47%) than print medium (31%) narratives; while those aged over 41 years at diagnosis produced more print narratives (68%) than internet narratives (50%). The experiences reported within both genres spanned the decades from the 1960s; however, 75% of authors, regardless of the genre they adopted, received their diagnosis during the 1990s. 72 Research to Improve Standards of Care 17th International Symposium on ALS/MND Discussion and conclusions: This study demonstrates the extent and availability of written narratives about the personal experience of living with ALS/MND. A substantial quantity of both published and unpublished personal illness narratives from the 1960s onwards has been identified. A broad cross-section of people with ALS/ MND, including those not normally associated with publication of personal stories, have documented their illness experiences within print and electronic mediums. The study has identified an unparalleled collection of personal illness narratives about life with ALS/MND that will help to illuminate what it means to be diagnosed with the illness
    Original languageEnglish
    Publication statusPublished - 2006
    Event17th International Symposium on ALS/MND - Yokohama, Japan
    Duration: 30 Nov 20062 Dec 2006


    Conference17th International Symposium on ALS/MND


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