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.

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.