Staying just one step ahead: Providing care for patients with motor neurone disease

McConigley, R; Kristjanson, LJ; Aoun, SM; Oldham, L; Currow, DC; O'Connor, M; Holloway, K

Staying just one step ahead: Providing care for patients with motor neurone disease

McConigley, R Kristjanson, LJ Aoun, SM Oldham, L Currow, DC

O'Connor, M Holloway, K

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Publication Type:: Journal Article
Citation:: BMJ Supportive and Palliative Care, 2014, 4 (1), pp. 38 - 42
Issue Date:: 2014-01-01

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Field	Value	Language
dc.contributor.author	McConigley, R	en_US
dc.contributor.author	Kristjanson, LJ	en_US
dc.contributor.author	Aoun, SM	en_US
dc.contributor.author	Oldham, L	en_US
dc.contributor.author	Currow, DC https://orcid.org/0000-0003-1988-1250	en_US
dc.contributor.author	O'Connor, M	en_US
dc.contributor.author	Holloway, K	en_US
dc.date.issued	2014-01-01	en_US
dc.identifier.citation	BMJ Supportive and Palliative Care, 2014, 4 (1), pp. 38 - 42	en_US
dc.identifier.issn	2045-435X	en_US
dc.identifier.uri	http://hdl.handle.net/10453/118975
dc.description.abstract	Introduction: There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease (MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals. Methods: Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes. Results: A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual's version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members). Conclusions: Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs.	en_US
dc.relation.ispartof	BMJ Supportive and Palliative Care	en_US
dc.relation.isbasedon	10.1136/bmjspcare-2013-000489	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Motor Neuron Disease	en_US
dc.subject.mesh	Palliative Care	en_US
dc.subject.mesh	Terminal Care	en_US
dc.subject.mesh	Focus Groups	en_US
dc.subject.mesh	Qualitative Research	en_US
dc.subject.mesh	Health Personnel	en_US
dc.subject.mesh	Advance Care Planning	en_US
dc.subject.mesh	Australia	en_US
dc.subject.mesh	Interviews as Topic	en_US
dc.subject.mesh	Palliative Medicine	en_US
dc.title	Staying just one step ahead: Providing care for patients with motor neurone disease	en_US
dc.type	Journal Article
utslib.citation.volume	1	en_US
utslib.citation.volume	4	en_US
utslib.for	1110 Nursing	en_US
utslib.for	1117 Public Health and Health Services	en_US
pubs.embargo.period	Not known	en_US
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/IMPACCT
utslib.copyright.status	closed_access
pubs.issue	1	en_US
pubs.publication-status	Published	en_US
pubs.volume	4	en_US

Abstract:

Introduction: There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease (MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals. Methods: Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes. Results: A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual's version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members). Conclusions: Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/118975