City Research Online

Abstract

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 version of the following article, accepted for publication in Disability and Rehabilitation. Paynter, C., Mathers, S., Gregory, H., Vogel, A. and Cruice, M. (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. It is deposited under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.
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 & Psychological Sciences > Language & Communication Science
SWORD Depositor:	Symplectic Administrator

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