title: Recognition by family members that relatives with neurodegenerative disease are likely to die within a year: a meta-ethnography.
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.
  
  
  METHODS
  A meta-ethnography of studies of family members in multiple sclerosis (MS), Parkinson's disease (PD) and motor neuron disease (MND).
  
  
  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.
authors.affiliation: Cancer Care Research Centre, School of Nursing, Midwifery and Health, University of Stirling, Stirling FK9 4LA, UK.
authors.forename: G
authors.initials: G
authors.lastname: Hubbard
authors.forename: K
authors.initials: K
authors.lastname: McLachlan
authors.forename: L
authors.initials: L
authors.lastname: Forbat
authors.forename: D
authors.initials: D
authors.lastname: Munday
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000884:Anthropology, Cultural; D001293:Attitude to Death; D018450:Disease Progression; D005190:Family / Q000523:psychology*; D006301:Health Services Needs and Demand; D006801:Humans; D016472:Motor Neuron Disease / Q000401:mortality / Q000523:psychology; D009103:Multiple Sclerosis / Q000401:mortality / Q000523:psychology; D019636:Neurodegenerative Diseases / Q000401:mortality* / Q000523:psychology; D010166:Palliative Care; D010300:Parkinson Disease / Q000401:mortality / Q000523:psychology; D011379:Prognosis; D036301:Qualitative Research