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Table 1 Context 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
Business driven care homes Profit prioritised over care quality  
Lower staff salaries and lowly skilled care staff
Minimal staffing levels
Poor staff conditions
Increasing turnover of staff, lack of continuity
Negative image of care homes and low prestige working in care homes
Demanding workloads
Staff have limited time
Complex network of health and social care providers Multiple agencies to make referrals to and communicate with  
No option to make direct referrals from care home  
Long waiting times for some services/care home admission
External HCPs who are proactive and helpful in providing care to people with advanced dementia/access to external services
Societal and family attitudes towards care home staff Negative perception of care homes
Recognition that care home staff work hard
Lack confidence in care home staff
Staff training, experience and reflective processes Lack of training/experience in dementia care (in care homes, hospital and amongst GPs)
Post-death reflections  
Beneficial to prepare staff for EOL care and to provide exposure to EOL care  
Governance and regulation of care homes Highly regulated
Excessive documentation and scrutiny
Complexities of providing care in advanced dementia Long trajectory and unpredictable prognosis  
Challenging to manage symptoms due to the communication difficulties
Difficult to understanding the relationship with palliative care  
Palliative care services not equipped to manage behavioural symptoms of dementia  
Need for continuity of care and gradual changes  
Difficult decisions regarding quality of life and prolonging life; can no longer have EOL conversations with person who has dementia  
Stigma associated with dementia impacts on care  
Dementia not considered terminal  
Advance care planning Proactive Advance Care Planning
Importance of involving GP and family in these discussions
Staff personality/ characteristics Compassion
Motivation/making an effort
Initiative  
Finding the job rewarding  
Information needs of family carers Lack of formal structure to provide information to support family carers  
No single point of contact for information regarding resident’s health  
Family rely on information from the Internet and brochures, Admiral nurses helpful  
Family carers feel unprepared and ill-informed – don’t know what or who to ask  
Cost of services Some family carers can pay for better services and some experience financial burden to pay for services  
Inadequate funding for continuing care  
  1. Note. Bold, italicised text indicates additional detail to sub-themes added after analysis of family carer interviews