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Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review

Turner, Nicola; Faull, Christina; Palmer, Jonathan; Armstrong, Alison; Bedford, Jennifer; Turner, Martin R.; Wilson, Eleanor

Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review Thumbnail


Authors

NICOLA TURNER Nicola.Turner5@nottingham.ac.uk
Senior Research Fellow

Christina Faull

Jonathan Palmer

Alison Armstrong

Jennifer Bedford

Martin R. Turner



Abstract

Tracheostomy ventilation (TV) can increase survival time for people living with motor neurone disease (MND); however, the use of TV varies between countries. Concerns regarding anticipated quality of life (QoL) are among the reasons given by healthcare professionals for not recommending this intervention, yet little is known about QoL in this context. This scoping review was conducted to examine the evidence on QoL for those with MND who use TV and family members involved in their care. Using the methodological guidance of the Joanna Briggs Institute, 23 papers were identified for inclusion, and findings were inductively analysed to identify key themes. We found that people living with MND tend to rate QoL post TV more positively than anticipated by healthcare professionals or family members. QoL was found to be related to positive relationships and activities the person could maintain. Feeling able to make a choice and an adequate level of financial resources were also important factors. Family members tended to experience lower QoL, associated with the uncertainty surrounding an emergency procedure and the complexity of subsequently required care. More evidence on QoL from the perspectives of people with MND who use TV is needed to support decision making and inform guidance.

Citation

Turner, N., Faull, C., Palmer, J., Armstrong, A., Bedford, J., Turner, M. R., & Wilson, E. (2024). Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review. Brain Sciences, 14(8), Article 821. https://doi.org/10.3390/brainsci14080821

Journal Article Type Article
Acceptance Date Aug 14, 2024
Online Publication Date Aug 16, 2024
Publication Date Aug 16, 2024
Deposit Date Aug 20, 2024
Publicly Available Date Aug 20, 2024
Journal Brain Sciences
Electronic ISSN 2076-3425
Publisher MDPI
Peer Reviewed Peer Reviewed
Volume 14
Issue 8
Article Number 821
DOI https://doi.org/10.3390/brainsci14080821
Keywords motor neurone disease; amyotrophic lateral sclerosis; tracheostomy ventilation; invasive ventilation; quality of life; wellbeing; family care
Public URL https://nottingham-repository.worktribe.com/output/38383834
Publisher URL https://www.mdpi.com/2076-3425/14/8/821

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