How people with motor neurone disease talk about living with their illness: a narrative study
Open accessAbstract
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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Patients with MND cite the importance of reassurance and trust from health care professionals.
“Importantly, patients cited the importance of reassurance and trust from health care professionals (6, 9, 10, 14, 23, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [9]
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- Authors
- Brown, J., & Addington‐Hall, J.
- Affiliations
- University of Southampton (GB)
- Venue
- Journal of Advanced Nursing
- Publisher
- Wiley
- Published
- 2008-04
- Volume
- 62
- Issue
- 2
- Pages
- 200-208
- ISSN
- 0309-2402 (ISSN-L)
- 1365-2648
- OpenAlex
- W2033106917
- Cited by
- 81
- References
- 43
- Citations by year
- 2026: 2 · 2025: 3 · 2024: 3 · 2023: 4 · 2022: 2 · 2021: 4 · 2020: 3 · 2019: 5 · 2018: 5 · 2017: 4 · 2016: 1 · 2015: 10 · 2014: 4 · 2013: 9 · 2012: 5
- FWCI
- 15.66
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Journal of Advanced Nursing (publishedVersion)
- PubMed (publishedVersion)
- ePrints Soton (University of Southampton) (submittedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Social Sciences › Education › Qualitative research in health
- Keywords
- motor neuron disease, patient experience, coping with illness, illness narratives, storylines, mobility loss, communication disorders, disempowerment, fear of death, home care, care homes, narrative interviews
- MeSH terms
- Adaptation, Psychological, Adult, Aged, Aged, 80 and over, Attitude to Health, Female, Humans, Interviews as Topic, Male, Middle Aged, Stress, Psychological, Motor Neuron Disease, Narration, Qualitative Research
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