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Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Recognition by family members that relatives with neurodegenerative disease are likely to die within a year: a meta-ethnography
Authors: Hubbard, Gill
McLachlan, K
Forbat, Liz
Munday, Daniel
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Keywords: Family
motor neuron disease
multiple sclerosis
palliative care
Parkinson’s disease
Issue Date: Mar-2012
Publisher: SAGE
Citation: Hubbard G, McLachlan K, Forbat L & Munday D (2012) Recognition by family members that relatives with neurodegenerative disease are likely to die within a year: a meta-ethnography, Palliative Medicine, 26 (2), pp. 108-122.
Abstract: OBJECTIVE To synthesize evidence of family members recognizing that their relative is likely to die within the year, and identifying the need for palliative care. DESIGN A meta-ethnography of studies of family members in multiple sclerosis (MS), Parkinson's disease (PD) and motor neuron disease (MND). Review methods: Systematic search in electronic databases; thematic synthesis guided by the principles of meta-ethnography, which is a method for thematic synthesis of qualitative studies. RESULTS Nine articles were included. The results of the synthesis identified two key themes. First, family members are intimately aware of changes in their relative's health and well-being. Sub-themes include family member awareness of different and progressive stages of the disease, noticing deterioration, noticing decline in functional abilities and recognizing that their relative will die. The second key theme is dilemmas of being involved in prognostication. Sub-themes include family member ambivalence toward hearing about prognostication, health professionals not being knowledgeable of the disease and family reluctance to receive palliative care. CONCLUSIONS Family members monitor and recognize changes in their relative with PD, MND and MS and in themselves. Thus, drawing on the expertise of family members may be a useful tool for prognostication.
Type: Journal Article
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Rights: The publisher does not allow this work to be made publicly available in this Repository. Please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author. You can only request a copy if you wish to use this work for your own research or private study.
Affiliation: Cancer Care Research Centre
University of Stirling
HS Research - Stirling
University of Warwick

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