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

    193748_193748.pdf (233.6Kb)
    Access Status
    Open access
    Authors
    McConigley, Ruth
    Kristjanson, Linda
    Aoun, Samar
    Oldham, Marylynn
    Currow, D.
    O'Connor, Moira
    Holloway, Kristi
    Date
    2014
    Type
    Journal Article
    
    Metadata
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    Citation
    McConigley, R. and Kristjanson, L.J. and Aoun, S.M. and Oldham, L. and Currow, D.C. and O'Connor, M. and Holloway, K. 2014. Staying just one step ahead: providing care for patients with motor neurone disease. BMJ Supportive & Palliative Care. 4: pp. 38-42.
    Source Title
    BMJ Supportive & Palliative Care
    DOI
    10.1136/bmjspcare-2013-000489
    ISSN
    20454368
    Remarks

    This article has been accepted for publication in BMJ Supportive & Palliative Care following peer review and can also be viewed at <a href="http://spcare.bmj.com/">http://spcare.bmj.com/</a>

    URI
    http://hdl.handle.net/20.500.11937/12284
    Collection
    • Curtin Research Publications
    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.

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