Table 1 Context themes for healthcare professionals (HCP [31]) and family carers
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 | ✓ | ||