South West Palliative Care Research Network
Who are we and what are we doing?
We are a group of people from 7 hospices, 4 universities and various community and health organisations across the SW England that want to improve people’s experiences at end of life. We wanted to find out the views and feelings of people living in rural and coastal areas, and those living on a low-income, about what is needed to enable living well, dying well, and grieving well. Understanding what is difficult for people dealing with end-of-life will help to develop the right kinds of support and future research, to better meet people’s needs.
Our aims
We spoke to people from different rural, coastal and low-income communities in the South-West to find out
- What issues are important to people when they think about death and dying?
- Are there issues particularly related to being in rural, coastal, and low-income communities that affect people’s experiences when they have a life-limiting illness, or that affect their families or carers?
- What information do people find useful and what kinds of support are people seeking?
- How accessible, useful and relevant do people find the resources and services available locally?
How did we find out?
Over nine months. from January to September 2022, we gathered people’s views and experiences, using four different methods:
- Departure Lounge
We took ‘The Departure Lounge’, a pop-up installation about end of life, into nine different settings, including community cafes, community groups, a health centre, charity shops.) We had conversations and shared information with people who were interested in sharing their thoughts and experiences.
[PHOTOS OF THE DEPARTURE LOUNGE TO BE PROVIDED]
- Community Conversations
Torbay Communities and Filament worked together to create a ‘Community Conversation suitcase’. This contained different creative activities and prompts to help facilitate conversations. It was used by Community Connectors to have conversations with individuals in their own homes. People took part who had experience of living with, or caring for someone living with, a life-limiting illness.
[PHOTOS OF THE SUITCASE TO BE PROVIDED]
If you work within the community, or a healthcare service, and would like to trial using the Community Conversations suitcases with community members, please get in touch. We would be delighted to loan the resource in return for some brief feedback [add Torbay Communities link to get in touch?]
- Real stories from the end of life
A storyteller from Filament worked with three participants to explore their experiences in more depth and co-create a ‘story’ for each person. This moving collection of stories illustrates a range of experiences.
[ADD BRIEF DESCRIPTION OF EACH STORY]
You can listen to the stories here [ADD LINK TO THE AUDIO STORIES ]
We are now thinking about how these stories could be used, for example for training health and social care professionals, or to advocate for better support. If you have any thoughts, ideas or suggestions for how these stories could be used, or would like to use them with your work / organisation, please let us know using this form
ADD MICROSOFT FORM FOR FEEDBACK
- Focus Groups
A researcher from Exeter University (Lorraine Hansford) ran 4 focus groups within community settings, to discuss in more depth the issues and themes that have been raised.
What did we learn?
We gathered together all of the information that people told us about their experiences of living, dying and grieving in the south west; the findings are available in the report available here. [LINK]
People expressed their views on the difficulty of accessing healthcare, support and information, explained what support was important to them, and described the role that communities can play in supporting people at end of life.
What next?
The findings are helping us to decide on areas of research that are important for the future, to address the needs identified by communities. Individual organisations within the network are also using the findings from the research to help shape their services. The South West Palliative Care Research Network was funded to run for 15 months by the National Institute for Health Research. Member organisations (listed below) are continuing to meet to discuss opportunities for future joint research opportunities.
Get in touch
[Contact names / email addresses?? To be added]
SW Palliative Care Research network: Member organisations
The organisations involved in the partnership are:
Cornwall Hospice Care
Devon & Cornwall Police
Health Watch Devon, Plymouth & Torbay
Hospiscare
King’s College London
Marie Curie
North Devon Hospice
NIHR Clinical Research Network South West Peninsula
NIHR Research Design Service South West
Plymouth Octopus Project
Rowcroft Hospice
SWP Palliative Care Research Partnership Patient and Public Involvement group
St Luke’s Hospice
St Margaret’s Hospice
Torbay Community Development Trust
University College London / St Christopher’s Hospice
University of Exeter
University of Plymouth.
[ADD NIHR FUNDING STATEMENT AND LOGO]