Enabling decision-making: what assists people with motor neurone disease when they consider gastrostomy insertion?

Hogden, A; Labra, J; Power, E

Enabling decision-making: what assists people with motor neurone disease when they consider gastrostomy insertion?

Hogden, A Labra, J Power, E

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Publisher:: TAYLOR & FRANCIS LTD
Publication Type:: Journal Article
Citation:: Disabil Rehabil, 2024, ahead-of-print, (ahead-of-print), pp. 1-8
Issue Date:: 2024-08-28

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Field	Value	Language
dc.contributor.author	Hogden, A
dc.contributor.author	Labra, J
dc.contributor.author	Power, E https://orcid.org/0000-0002-2638-0406
dc.date.accessioned	2024-10-09T00:38:58Z
dc.date.available	2024-10-09T00:38:58Z
dc.date.issued	2024-08-28
dc.identifier.citation	Disabil Rehabil, 2024, ahead-of-print, (ahead-of-print), pp. 1-8
dc.identifier.issn	0963-8288
dc.identifier.issn	1464-5165
dc.identifier.uri	http://hdl.handle.net/10453/181273
dc.description.abstract	PURPOSE: This study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported. MATERIALS AND METHODS: The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52-73 years; disease duration 6-99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual's experience of decision-making about PEG. The data were synthesised and analysed thematically. RESULTS: Three main themes and two sub-themes captured participant views on their decision-making. The first, "What matters most to me," comprised optimising quality of life and maintaining family membership. The second theme explored "Understanding PEG and the clinical pathway." The third theme was "Thoughts on using a decision aid." CONCLUSIONS: This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	TAYLOR & FRANCIS LTD
dc.relation.ispartof	Disabil Rehabil
dc.relation.isbasedon	10.1080/09638288.2024.2395473
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	11 Medical and Health Sciences
dc.subject.classification	Rehabilitation
dc.subject.classification	32 Biomedical and clinical sciences
dc.subject.classification	42 Health sciences
dc.subject.classification	44 Human society
dc.title	Enabling decision-making: what assists people with motor neurone disease when they consider gastrostomy insertion?
dc.type	Journal Article
utslib.citation.volume	ahead-of-print
utslib.location.activity	England
utslib.for	11 Medical and Health Sciences
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Graduate School of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Graduate School of Health/GSH.Speech Pathology
pubs.organisational-group	University of Technology Sydney/UTS Groups
pubs.organisational-group	University of Technology Sydney/UTS Groups/UTS Ageing Research Collaborative (UARC)
utslib.copyright.status	open_access	*
dc.rights.license	This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND 4.0). To view a copy of this license, visit https://creativecommons.org/licenses/by-nc-nd/4.0/
dc.date.updated	2024-10-09T00:38:54Z
pubs.issue	ahead-of-print
pubs.publication-status	Published online
pubs.volume	ahead-of-print
utslib.citation.issue	ahead-of-print

Abstract:

PURPOSE: This study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported. MATERIALS AND METHODS: The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52-73 years; disease duration 6-99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual's experience of decision-making about PEG. The data were synthesised and analysed thematically. RESULTS: Three main themes and two sub-themes captured participant views on their decision-making. The first, "What matters most to me," comprised optimising quality of life and maintaining family membership. The second theme explored "Understanding PEG and the clinical pathway." The third theme was "Thoughts on using a decision aid." CONCLUSIONS: This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.

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http://hdl.handle.net/10453/181273