City Research Online

Abstract

Rationale: Motor neurone disease (MND) is a neurodegenerative disease presenting with progressive weakness of voluntary muscles. For any condition, person-centred healthcare relies on the sharing of information and a mutual understanding of the person’s needs and preferences. Decision-making in MND becomes more complex as there is no cure and a high prevalence of co-morbid communication and/or cognitive difficulties.

Objective: To identify the reported impact of communication and/or cognitive impairment on patient and carer involvement in healthcare decision-making in MND.

Methods: A review and synthesis of studies addressing issues of communication impairment and/or cognitive impairment in relation to decision-making focussed on MND was conducted. Articles were excluded if they were reviews, case studies, conference papers or commentaries. To be included studies needed to address issues of communication impairment or cognitive impairment specifically in relation to decision-making. Relevant data was extracted verbatim and subjected to content analysis to support the narrative summary.

Results: Seventy-six articles were identified and 35 articles screened. Six articles met inclusion criteria each describing examples of decision-making in MND. There was limited data related to communication and/or cognitive impairment and the impact these impairments may have on decision-making despite recognition that many people with MND may lose verbal communication or develop subtle cognitive impairments. The literature is primarily from the perspective of others.

Conclusion: This review highlights that the current body of literature exploring decision-making within the MND population presents us with extremely limited insights into the impact of communication and/or cognitive impairments on healthcare decision-making. Extant literature focuses on interventions (namely ventilation and gastrostomy), the broad process of decision-making, or cognitive assessment of decision-making ability. Whilst most studies acknowledge that deficits in communication or cognition impact the decision-making process, this issue is not the focus of any study.

Publication Type:	Article
Additional Information:	This is the peer reviewed version of the following article: Paynter, C., Cruice, M. , Mathers, S., Gregory, H. and Vogel, A. (2019). Communication and cognitive impairments and healthcare decision-making in MND: A narrative review. Journal of Evaluation in Clinical Practice, which is published in final form at https://doi.org/10.1111/jep.13219. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.
Publisher Keywords:	motor neurone disease, amyotrophic lateral sclerosis, decision-making, communication impairment, cognitive impairment
Subjects:	P Language and Literature > P Philology. Linguistics R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Departments:	School of Health & Psychological Sciences > Language & Communication Science
SWORD Depositor:	Symplectic Administrator

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