This project aimed to understand the experiences of people affected by death, dying and bereavement in the UK today.
Background
Everyone affected by dying, death and bereavement deserves the best possible experience. Sadly, many people experience poor care and support in the last stages of life and in bereavement. Although care inequalities for people affected by death, dying and bereavement are common, these are rarely policy priorities. Our project aimed to understand the experiences of people affected by death, dying and bereavement in the UK today. We did this by gathering new evidence and identified and summarised existing data.
We framed the findings in a way that compels policy makers to take action.
Research plan:
Three workstreams carried out in parallel, over three years:
- Workstream 1: We wanted to know the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK? We generated new data through a large survey of bereaved relatives and carers. We wanted to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness, and anxiety. We also explored carers’ grief intensity.
- Workstream 2: We wanted to know what care and services are available, and which are most effective? We mapped availability of care and services to identify gaps and inequalities. We reviewed and summarised evidence to identify the most effective ways to deliver services.
- Workstream 3: We measured the quality of death, dying and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understood differences between regions.
Communication of results
A public and policy engagement programme ran alongside the research. We organised workshops with members of the public to gauge public opinion and explore priorities; round-table discussions with senior decision makers to engage with the research and explore policy priorities; media and public engagement activities to raise societal awareness and spark a national conversation; evidence summaries and data specific to UK regions to promote local and national policy engagement.
Project Aims
The three workstreams (WS) ran in parallel.
The project was underpinned by the theoretical framework of Donabedian, using the three-component approach to evaluate quality of care:
- Outcomes - what is the quality of care for individuals/families? (WS1, WS3)
- Processes - how is care is provided and received? (WS1, WS2, WS3)
- Structures - what care is available (but not necessarily accessed)? (WS2, WS3)
Project Activity
- Workstream 1. Post-bereavement (mortality follow-back) survey of bereaved carers
- Workstream 2. Mapping of care and services
- Workstream 3. Identification, synthesis and analysis of metrics
Outputs and Impacts
Peer review publications and briefings for policy makers
Who was involved?
- Katherine Sleeman, KCL London
- Irene Higginson, KCL London
- Rashmi Kumar, KCL London
- Stephen Barclay, University of Cambridge
- Fliss Murtagh, Hull York Medical School
Papers/Resources
- Leniz J, Davies J, Bone A, Hocaoglu M, Verne J, Barclay S, Murtagh F, Fraser L, Higginson I, Sleeman K (2023). “Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: an analysis of mortality data across four nations”. Palliative Medicine; in press
- Chambers R, Pask S, Higginson I, Barclay S, Murtagh F, Sleeman K (2022). “Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis”. AMRC Open Research; 4 :19 doi.org/10.12688/amrcopenres.13079.1
- O’Donnell S, Bone A, Finucaine A, McAleese J, Higginson I, Barclay S, Sleeman K, Murtagh F (August 2021) “Changes in mortality patterns and place of death during the COVID-19 pandemic: A retrospective analysis of mortality data” Palliative Medicine; 35(10): 1975 – 1984 doi:10.1177/02692163211040981
- Johansson T, Chambers RL, Curtis T, Pask S, Greenley S, Brittain M, et al. The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review. Palliat Med. 2024 Jun;38(6):625-43
Contact us
Stephen Barclay, University of Cambridge
