User, carer and professional experiences of care in motor neurone disease
Open accessAbstract
Motor neurone disease (MND) is a devastating neurological terminal condition with no cure. Care is the only option, which sharpens the need for its examination and clarification. This paper reports on a hermeneutic study which addressed the question, ‘What are the lay and professional values of care in the context of motor neurone disease and is there a difference between them which affects care delivery and receipt?’ The study discovered three ways of caring, with most alignment between the two lay groups. The professional carer stance is predominantly functional and illustrates detachment from the experience of living with illness whereas the recipients' needs are holistic. These two value structures, the mechanistic and the hermeneutic, are in tension. To redress this imbalance, support for a dispositional shift in professional values to be more client focused is advocated.
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Individuals with MND can feel fear and anxiety about their future deterioration, as well as being afraid of death.
“Individuals could feel fear and anxiety about their future deterioration, as well as being afraid of death (2, 10, 11, 12, 13, 14, 15, 21, 23, 25, 26, 27, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [10]
Patients with MND value others who are personable, reassuring, and remain calm.
“A further characteristic valued by patients was the “nature” of other's highlighting the value of individuals who were personable, reassuring and who remained calm (4, 6, 10).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [10]
Patients with MND often suggested that the best they could do was to live positively and make the most of the time they had left.
“Patients often suggested that the best they could do was to live positively and make the most of the time they had left (2, 10, 11, 14, 15, 18, 20, 27, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [10]
Patients with MND use the strategy of dealing with problems as they arrive and affect their life.
“(b) Dealing with problems as they arrive and affect their life (2, 7, 10, 11, 12, 14, 18, 25, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [10]
Some patients with MND wanted a distraction or a break from the illness.
“Other individuals wanted a distraction or a break from the illness (7, 10, 11, 14, 17).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [10]
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 [10]
The cost of care can restrict care provision for patients with MND.
“The cost of care could restrict care provision (3, 10, 11, 20).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [10]
Patients with MND use the strategy of bringing time closer and focusing on the ability to cope with the present circumstances.
“Several strategies were used by patients in dealing with the symptoms and problems they faced, including: (a) Bringing time closer and focusing on the ability to cope with the present circumstances (2, 10, 14, 18, 25, 27).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [10]
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- Authors
- Brown, J. B.
- Affiliations
- University of Southampton (GB)
- Corresponding author
- Brown, Janice B
- Venue
- Primary Health Care Research and Development
- Publisher
- SAGE Publications
- Published
- 2003-07-01
- Volume
- 4
- Issue
- 3
- Pages
- 207-217
- ISSN
- 1463-4236 (ISSN-L)
- 1477-1128
- OpenAlex
- W2166161272
- Cited by
- 72
- References
- 32
- Citations by year
- 2026: 2 · 2025: 1 · 2024: 2 · 2023: 2 · 2022: 2 · 2021: 4 · 2020: 1 · 2019: 2 · 2018: 2 · 2017: 5 · 2016: 5 · 2015: 9 · 2014: 5 · 2013: 5 · 2012: 6
- FWCI
- 3.08
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Primary Health Care Research & Development (publishedVersion)
- ePrints Soton (University of Southampton) (submittedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- motor neuron disease, care values, lay carers, professional caregivers, user experience, holistic care, client-centred care, professional detachment, health care delivery
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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