Brown, J.B. and Addington-Hall, J.
Identifying how people with MNDIALS talk about living through their illness: A narrative study to enhance self-management
At 18th International Symposium on Amyotrophic Lateral Sclerosis and Motor Neuron Diseases (ALS/MND-2007).
01 - 03 Dec 2007.
Full text not available from this repository.
Background: There is little known about how people live
or manage coping with motor neurone disease or
amyotrophic lateral sclerosis, (MND/ALS) which is
essential knowledge for developing approaches to enhance
quality of life and patient self-management. This study
used narrative research methods to explore how patients
with MND/ALS talk about living and coping with this
disease. Narrative research, whereby people who are ill are
encouraged to tell their stories, can elucidate issues
previously overlooked in biomedical approaches to disease
management. One approach to classifying illness narratives
involves identification of storylines or ‘plots’. This
paper presents four ‘plots’ which were identified and
developed into a framework of narrative styles which may
be helpful for patients, family care-givers and professionals
to enhance quality of care and patient self-management.
Objectives: 1) To explore patient experiences of living
and coping through MND/ALS; 2) to ascertain how
people talk about living and coping with MND/ALS
Methods: The study involved a series of longitudinal
narrative case studies. Thirteen patients were recruited
through purposeful sampling. Six rounds of in-depth narrative interviews were conducted every three months
over an eighteen month period. A narrative thematic
framework approach (1,2) was developed which takes into
account an entire story and focuses on its form to identify
narrative themes. This approach is responsive to emergent
issues allowing construction and revision of the themes
and the developing framework as new and emergent
themes are noted and added. Results are summarised in a
final thematic frame and also presented with illustrative
quotations relating to the themes.
Results: A framework of four narrative styles was
identified and the styles named fracturing, sustaining,
preserving and enduring. Some participants presented a
kaleidoscopic interchange of the four narrative styles
whereas others presented a consistent style throughout
Discussion: Identification of patient narrative styles offers
unique insight into patients’ approaches and responses to
coping with MND/ALS. It is suggested that knowledge of
the narrative styles may be helpful for patients, family caregivers
and professionals as a framework for understanding
patient approaches to living with a life-limiting illness
which may enhance patient self-management and quality
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