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Table 2 Mechanism themes for healthcare professionals (HCP [31]) and family carers

From: Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: family carers perspective

Theme Sub-theme Reported by:
HCP Family carers
Level of HCPs confidence Confidence/uncertainty about best approach to EOL care  
Fear of litigation  
Fear of death (avoidance)/Accepting (comfortable with dying/death)  
Family carers’ confidence in care staff Family lacking confidence in care quality leading to supplementing and monitoring care  
Family uncertainty about EOL care Confusion/uncertainty regarding EOL care decisions, particularly around food and eating
Family avoiding discussions regarding EOL
Family carers not recognising the need/importance of having these conversations or who to go to  
Family carers lacking information to inform decisions and unaware that ACPs can be altered; difficulty evaluating care quality  
Resources for improving EOL care and supporting families Admiral nurses
Post-death reflections  
Building relationships between people with dementia, family carers, care staff and healthcare professionals  
Observation and experiential learning as more effective (particularly where staff have limited writing skills)  
Advance Care Planning, in particular DNAR as a resource for comfort care/good death  
Gold Standards Framework as a resource to provide good care but variable use across care homes  
Family carers’ determination in accessing NHS continuing healthcare funding Limited resources and a poor understanding of the complex needs of those with advanced dementia appear to restrict access to continuing care funds  
CCGs uncertainty about whether dementia specific palliative care is required Uncertainty as to whether specific dementia palliative care services are necessary  
  1. Note. Bold, italicised text indicates additional detail to sub-theme added after analysis of family carer interviews