Document Detail

Recognition by family members that relatives with neurodegenerative disease are likely to die within a year: a meta-ethnography.
MedLine Citation:
PMID:  21586618     Owner:  NLM     Status:  MEDLINE    
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.
G Hubbard; K McLachlan; L Forbat; D Munday
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Publication Detail:
Type:  Journal Article; Research Support, Non-U.S. Gov't; Review     Date:  2011-05-17
Journal Detail:
Title:  Palliative medicine     Volume:  26     ISSN:  1477-030X     ISO Abbreviation:  Palliat Med     Publication Date:  2012 Mar 
Date Detail:
Created Date:  2012-02-21     Completed Date:  2012-05-25     Revised Date:  2014-07-30    
Medline Journal Info:
Nlm Unique ID:  8704926     Medline TA:  Palliat Med     Country:  England    
Other Details:
Languages:  eng     Pagination:  108-22     Citation Subset:  IM    
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MeSH Terms
Activities of Daily Living
Adaptation, Psychological*
Anthropology, Cultural
Attitude to Death
Disease Progression*
Family / psychology*
Health Services Needs and Demand
Motor Neuron Disease / mortality,  psychology
Multiple Sclerosis / mortality,  psychology
Neurodegenerative Diseases / mortality*,  psychology
Palliative Care
Parkinson Disease / mortality,  psychology
Qualitative Research

From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine

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