Supportive and Palliative Care research group: research projects
Below is a list of research projects in the field of supportive and palliative care.
BMH - Nursing - Supportive and Palliative Care - Completed studies
The impact of variations in out of hours end of life care provision on patient experience, staff and health systems
Abstract
Most people would like to die at home but many die in hospital. Problems with accessing help outside of
normal surgery hours is one reason for this. The care provided for people at home out of hours is changing
rapidly, as is the care it provides for people at the end of life; this also varies across the country. To be able
to improve care it is important to understand how patients are affected by care changes and variations, and
what works best for them. This study will investigate how variations in out of hours care for people at the end
of their lives is provided and has an impact on patients and carers' experience and satisfaction. Patients and
the public will be involved in an expert panel and user reference group, as well as local reference groups and
the public will be involved in an expert panel and user reference group, as well as local reference groups and
as study participants.
In five organisational case studies with varied out of hours end of life care, maps of all possible patient
pathways through out of hours care will be developed. Interviews with staff will explore how they provide out of
hours end of life care, and their views of this care. Patients and carers who use this care will be interviewed
about their experience and their needs for care. Detailed maps of each patient's journey through the system
will be drawn, and one overall map for each area will be developed. This will be used to think about the ways
patients ‘flow' through the system, where the main ‘bottlenecks' are, and to predict what would happen if
changes were made. The research will show which variations in out of hours care for end of life patients are
associated with better experiences for patients and carers and are less likely to have unexpected negative
consequences for the wider health care system.
Duration of the project
3 years
Funding body
SDO
Members of the project
| Name | Role |
|---|---|
| Professor Chris Todd | Principal investigator |
| Professor Gunn Grande | Co-investigator |
Full Proposal
Scientific Summary
There is a need to better understand out of hours (OoH) end of life (EoL) care within the context of OoH care
in general, to define the models of care which currently exist; to evaluate their impact on patients and carers,
staff and on the health care system; and to understand their relation to patient and family need. The proposed
study aims to define and evaluate models of generalist OoH EoL care provision within a systems approach,
specifically using Systems Dynamics as the study's analytical modelling methodology, to take account of
different service providers, to assess how service configurations work in different geographical areas and to
identify factors that promote or inhibit patient care. It uses a multiple case study design, combining
qualitative and quantitative methods within Mingers and Brockleby's framework for combining multiple
methodologies to guide the study's sequence and support the analysis plan. Project phases are:
1) appreciation of the situation, in which data will be collected by:
a. analysis of PCT EoL and OoH strategies from 152 PCTs and 14 Health Boards
b. a national survey of OoH EoL provision via telephone and postal survey of key informants in SHAs, PCTs
and local services, to enable models of care to be identified and to inform emerging theoretical propositions
about quality OoH EoL care
c. a national Expert Panel and a user reference to inform case study selection (cases will be selected for
maximum variation, informed by theoretical propositions and with one case study located in Scotland, North
West, South and South West))
d. 5 in-depth case studies,(including local reference groups, 20 staff interviews in each case, patient pathway
and experience study (n=40 in each site))
e. health professional discrete choice experiment (n=500).
2) data analysis to understand and build explanations ( possible mechanisms or structures) for what has been
observed: use of Systems Dynamic as analytical modelling methodology; generation of qualitative systems
dynamic models of patient pathways in each case study.
3) assessment of the ways in which either the explanations or the situation could be different - including
validation of qualitative models with local reference groups; analytical generalisation.
4) action to disseminate the findings and to facilitate local development by providing feedback and supporting
organisational learning.
This study will facilitate the provision of better OoH EoL care by 1) discovering new information from a
systems approach on how OoH EoL care systems ‘work', on patient and carer need and experiences, and on
health professionals' preferences for OoH provision. Research products will for the first time include
qualitative models of OoH EoL systems providing new evidence in this context of feedback dynamics and
system behaviour. 2) supporting organisational learning in participating organisations and 3) providing
detailed case studies of OoH EoL care for the wider NHS to aid generalisability of the study's findings to the
wider NHS.
The research team have extensive experience in large, multi-centre collaborative studies in both end of life
and emergency and urgent care, and are therefore well placed to deliver this project.