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Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol

INTRODUCTION: Home mechanical ventilation can be used to manage symptoms of breathlessness and sustain life for people living with motor neuron disease (plwMND). In the UK, less than 1% of plwMND use tracheostomy ventilation (TV). This contrasts with some other countries, where rates are much higher...

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Autores principales: Wilson, Eleanor, Turner, Nicola, Faull, Christina, Palmer, Jonathan, Turner, Martin R, Davidson, Scott
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10016280/
https://www.ncbi.nlm.nih.gov/pubmed/36914199
http://dx.doi.org/10.1136/bmjopen-2023-071624
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author Wilson, Eleanor
Turner, Nicola
Faull, Christina
Palmer, Jonathan
Turner, Martin R
Davidson, Scott
author_facet Wilson, Eleanor
Turner, Nicola
Faull, Christina
Palmer, Jonathan
Turner, Martin R
Davidson, Scott
author_sort Wilson, Eleanor
collection PubMed
description INTRODUCTION: Home mechanical ventilation can be used to manage symptoms of breathlessness and sustain life for people living with motor neuron disease (plwMND). In the UK, less than 1% of plwMND use tracheostomy ventilation (TV). This contrasts with some other countries, where rates are much higher. Due to a lack of evidence about its feasibility, cost-effectiveness or outcomes, TV is not covered in the UK National Institute for Health and Care Excellence guidance. Most plwMND receiving TV in the UK do so as an unplanned crisis intervention, which can lead to a prolonged hospital stay while a complex care package is arranged. There is insufficient literature addressing the burdens and benefits of TV, how it should be initiated and delivered, and how future care choices for plwMND can be supported. The aim of this research is to provide new understandings of the experiences of plwMND using TV, and those of family members and healthcare professionals (HCPs) involved in their care. METHODS AND ANALYSIS: A UK-wide qualitative study with two workstreams: (1) Patient focused case studies (n=6) including plwMND, family members and HCPs to focus on experiences and tasks of daily living from multiple perspectives. (2) Interviews with plwMND (n=10), family members, including bereaved family members (n=10) and HCPs (n=20) on broader experiences and issues relating to use of TV, such as ethical considerations and decision making. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Leicester South Research Ethics Committee (22/EM/0256). All participants will be asked to provide electronic, written and/or audio recorded informed consent. Study findings will be disseminated in peer-reviewed journals and conference presentations and used to develop new resources for teaching and public information.
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spelling pubmed-100162802023-03-16 Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol Wilson, Eleanor Turner, Nicola Faull, Christina Palmer, Jonathan Turner, Martin R Davidson, Scott BMJ Open Neurology INTRODUCTION: Home mechanical ventilation can be used to manage symptoms of breathlessness and sustain life for people living with motor neuron disease (plwMND). In the UK, less than 1% of plwMND use tracheostomy ventilation (TV). This contrasts with some other countries, where rates are much higher. Due to a lack of evidence about its feasibility, cost-effectiveness or outcomes, TV is not covered in the UK National Institute for Health and Care Excellence guidance. Most plwMND receiving TV in the UK do so as an unplanned crisis intervention, which can lead to a prolonged hospital stay while a complex care package is arranged. There is insufficient literature addressing the burdens and benefits of TV, how it should be initiated and delivered, and how future care choices for plwMND can be supported. The aim of this research is to provide new understandings of the experiences of plwMND using TV, and those of family members and healthcare professionals (HCPs) involved in their care. METHODS AND ANALYSIS: A UK-wide qualitative study with two workstreams: (1) Patient focused case studies (n=6) including plwMND, family members and HCPs to focus on experiences and tasks of daily living from multiple perspectives. (2) Interviews with plwMND (n=10), family members, including bereaved family members (n=10) and HCPs (n=20) on broader experiences and issues relating to use of TV, such as ethical considerations and decision making. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Leicester South Research Ethics Committee (22/EM/0256). All participants will be asked to provide electronic, written and/or audio recorded informed consent. Study findings will be disseminated in peer-reviewed journals and conference presentations and used to develop new resources for teaching and public information. BMJ Publishing Group 2023-03-13 /pmc/articles/PMC10016280/ /pubmed/36914199 http://dx.doi.org/10.1136/bmjopen-2023-071624 Text en © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
spellingShingle Neurology
Wilson, Eleanor
Turner, Nicola
Faull, Christina
Palmer, Jonathan
Turner, Martin R
Davidson, Scott
Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol
title Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol
title_full Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol
title_fullStr Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol
title_full_unstemmed Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol
title_short Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol
title_sort understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol
topic Neurology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10016280/
https://www.ncbi.nlm.nih.gov/pubmed/36914199
http://dx.doi.org/10.1136/bmjopen-2023-071624
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