Abstract
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Objectives: To identify published and unpublished illness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 language | English |
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Publication status | Published - 2006 |
Event | 17th International Symposium on ALS/MND - Yokohama, Japan Duration: 30 Nov 2006 → 2 Dec 2006 |
Conference
Conference | 17th International Symposium on ALS/MND |
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Country/Territory | Japan |
City | Yokohama |
Period | 30/11/06 → 2/12/06 |