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How people with motor neurone disease talk about living with their illness: a narrative study

How people with motor neurone disease talk about living with their illness: a narrative study
How people with motor neurone disease talk about living with their illness: a narrative study
Aim. This paper is a report of a study which explores patients' experiences and how they talk about living and coping with motor neurone disease.
Background. Living with motor neurone disease is challenging, frightening and disabling. It leads to progressive physical decline, normally with a prognosis of 3–5 years. Patients have to deal with many problems, including loss of mobility and the inability to communicate. There is little evidence about how people manage these problems or live with this illness.
Method. Narrative case studies were used, the unit of analysis being a patient living in their own home or a care home. Thirteen adults were recruited through purposeful sampling. Longitudinal narrative interviews were conducted at three-monthly intervals over an 18-month period in 2005–06. Interviews were analysed focusing on the form and content of the patients' narratives.
Findings. Four types of narrative, or storyline were identified. The sustaining storyline is about living life as well as possible through keeping active and engaged in life. In contrast, the enduring storyline concerns living in an insurmountable situation leaving the person feeling disempowered, unable to fight for life or against death. Survival is the essence of the preserving storyline, while the fracturing storyline concerns loss and fear of what is to come.
Conclusion. Storylines help make sense of complex narratives by encouraging closer attention and active listening to the stories and serve as organizing threads to help patients, families and healthcare professionals better understand living with motor neurone disease.
amyotrophic lateral sclerosis, motor neurone disease, narrative analysis, nursing, patient storylines
0309-2402
200-208
Brown, Janice
0d307639-0d40-44f0-a310-6925bf36c38e
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8
Brown, Janice
0d307639-0d40-44f0-a310-6925bf36c38e
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8

Brown, Janice and Addington-Hall, Julia (2008) How people with motor neurone disease talk about living with their illness: a narrative study. Journal of Advanced Nursing, 62 (2), 200-208. (doi:10.1111/j.1365-2648.2007.04588.x).

Record type: Article

Abstract

Aim. This paper is a report of a study which explores patients' experiences and how they talk about living and coping with motor neurone disease.
Background. Living with motor neurone disease is challenging, frightening and disabling. It leads to progressive physical decline, normally with a prognosis of 3–5 years. Patients have to deal with many problems, including loss of mobility and the inability to communicate. There is little evidence about how people manage these problems or live with this illness.
Method. Narrative case studies were used, the unit of analysis being a patient living in their own home or a care home. Thirteen adults were recruited through purposeful sampling. Longitudinal narrative interviews were conducted at three-monthly intervals over an 18-month period in 2005–06. Interviews were analysed focusing on the form and content of the patients' narratives.
Findings. Four types of narrative, or storyline were identified. The sustaining storyline is about living life as well as possible through keeping active and engaged in life. In contrast, the enduring storyline concerns living in an insurmountable situation leaving the person feeling disempowered, unable to fight for life or against death. Survival is the essence of the preserving storyline, while the fracturing storyline concerns loss and fear of what is to come.
Conclusion. Storylines help make sense of complex narratives by encouraging closer attention and active listening to the stories and serve as organizing threads to help patients, families and healthcare professionals better understand living with motor neurone disease.

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More information

Published date: April 2008
Keywords: amyotrophic lateral sclerosis, motor neurone disease, narrative analysis, nursing, patient storylines

Identifiers

Local EPrints ID: 54121
URI: https://eprints.soton.ac.uk/id/eprint/54121
ISSN: 0309-2402
PURE UUID: 24544325-0556-47ec-88f6-6fbe3f895ba4

Catalogue record

Date deposited: 15 Jul 2008
Last modified: 13 Mar 2019 20:39

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