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How people living with Motor Neurone Disease and their carers experience healthcare decision making: A qualitative exploration

Paynter, C., Mathers, S., Gregory, H., Vogel, A. and Cruice, M. ORCID: 0000-0001-7344-2262 (2020). How people living with Motor Neurone Disease and their carers experience healthcare decision making: A qualitative exploration. Disability and Rehabilitation, doi: 10.1080/09638288.2020.1855261


Purpose: Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated.

Methods: Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes.

Results: Data analysis identified six overarching themes: Dimensions of decision making; Window of opportunity for choice; Intrinsic influences on decision making; Extrinsic influences impacting decision making; Planning in uncertainty; and, Communication is core. Many participants did not identify a process of ‘decision-making’ except if considering early gastrostomy placement. Information provision requires a balance between ensuring patients are informed but not overwhelmed. Communication impairment impacts involvement. Healthcare professionals’ communication style influences engagement in decision making.

Conclusion: PlwMND perceive a lack of clinical decisions to make because disease symptoms and clinical phenotypes dictate necessary interventions. PlwMND describe communication impairment as a barrier to involvement in decision making and extra support is required to ensure they maintain engagement.

Publication Type: Article
Additional Information: This is an Accepted Manuscript of an article to be published by Taylor & Francis in Disability and Rehabilitation, available online:
Publisher Keywords: Amyotrophic Lateral Sclerosis, dysarthria, gastrostomy, Motor Neurone Disease, qualitative research, shared decision making
Subjects: R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
R Medicine > RT Nursing
Departments: School of Health Sciences > Language & Communication Science
Date Deposited: 03 Dec 2020 13:48
[img] Text - Accepted Version
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