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    A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

    186907_186907.pdf (608.9Kb)
    Access Status
    Open access
    Authors
    Aoun, Samar
    Bentley, B.
    Funk, L.
    Toye, Chris
    Grande, G.
    Stajduhar, K.
    Date
    2012
    Type
    Journal Article
    
    Metadata
    Show full item record
    Citation
    Aoun, Samar M. and Bentley, Brenda and Funk, Laura and Toye, Chris and Grande, Gunn and Stajduhar, Kelli J. 2012. A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions. Palliative Medicine. 27 (5): pp. 437-446.
    Source Title
    Palliative Medicine
    DOI
    10.1177/0269216312455729
    ISSN
    02692163
    URI
    http://hdl.handle.net/20.500.11937/34995
    Collection
    • Curtin Research Publications
    Abstract

    Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

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