2004 - 2007 - Cicely Saunders Institute - King's College London

In the attempt to find out what needs to be in place for
patients to die at home, Gomes and Higginson analysed
58 studies, involving 1.5 million patients in 13 countries.
They identified strong evidence for the effect of a
complicated network of 17 factors associated with death
at home 226 . The findings, depicted in an evidence-based
model (figure 2.10), were welcomed by many policy
makers and professionals committed to planning and
providing care that meets patients’ wishes.
The team has taken this research further to understand
and monitor changes in where people die over time. We
unveiled a longstanding dying trend away from home in
England & Wales from 1974 to 2003, that has sustained
for cancer and non-cancer, both genders and all people
aged 45 and over. Concerned by the implications of a
continuation of this trend into the future, a series of
national long-term projections are being prepared
accounting for different scenarios. The data from this
study will be of great value to plan for future palliative
care. Gomes and Higginson then plan to research ways
to improve the quality of palliative care at home to
discover more cost-effective models of home care so
that more people feel supported and can benefit from it.
Figure 2.11 Distribution of ABI carer participants
within UK Strategic Health Authorities
Numbers of carers
10
5
1
2.4.2 Carer Experiences in Long-term Neurological
Conditions
The health and happiness of family carers who look after
people with long-term neurological conditions can be
put at risk because many of those cared for have
multiple problems affecting their functioning in all
aspects of daily life and need round-the-clock care.
The Government’s National Service Framework (NSF) for
Long-Term Conditions (2005) set out specific initiatives
to transform the way that health and social care services
support these family carers. To inform its implementation,
Jackson and Turner-Stokes have conducted a
Department of Health funded programme of research
into carer experiences in neurological conditions.
In collaboration with researchers from the Social Policy
Research Unit at York University, the Institute of
Psychiatry and voluntary organisations, they completed
a national survey of the needs and experiences of carers
of adults with acquired brain injury (ABI) (figure 2.11).
This comprised:
• Systematic literature reviews of the sociological,
medical and psychological literature.
• A national questionnaire study, which compared and
contrasted the experiences of carers looking after a
relative of working age with ABI against a group of
carers of people with dementia studied previously.
Results showed that high levels of burden, a diminished
quality-of-life and poor health were common in both
carer groups (figure 2.12). ABI carers fared worse than
dementia carers, probably because more of them lived
with the person cared for and because they spent more
hours caring per week.
Figure 2.12 WHOQoL-BREF quality of life scores compared for ABI carers, dementia carers and a normative sample
100
90
80
Mean Quality of Life Scores
70
60
50
40
30
20
10
0
Physical Psycological Social Environmental
ABI carers (n+222) Dementia carers (n=132) Normative sample (n=396)
20