Stories of Care from the End of Life
Partners: South West Palliative Care Research Network
Artists: Sara Hurley
Research: Lorraine Hansford, University of Exeter
Location: Paignton, UK
The South West Palliative Care Research Network is a group of people from 7 hospices, 4 universities and various community and health organisations across South West England that want to improve people’s experiences at end of life.
They want 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. Funded by the National Institute for Health Research, the partnership developed a programme of engagement to:
Better understand the issues important to communities in relation to supporting the dying.
Explore how people’s experiences and needs impact upon their capacity to respond to death and dying, and,
Generate evidence on feasible ways to create conditions for communities to be active partners in supporting those with palliative care needs.
The pilot carried out a range of activities, including:
Taking the ‘Departure Lounge’ installation (Academy of Medical Sciences) into community settings to generate informal conversations.
Co-designing a creative toolkit to facilitate 40 ‘Community Conversations’ with individuals with experience of living with or caring for someone with a life-limiting illness.
Storyteller Sara Hurley worked with three participants to explore their experiences in more depth and co-create a story for each person.
Researcher Lorraine Hansford from the University of Exeter ran four focus groups within community settings, to discuss in more depth the issues and themes that had been raised.
Filament developed two elements as part of this wider work:
Community Conversations aimed to draw reflections from a larger number of people, facilitated as one-to-one sessions by Community Connectors from Torbay Communities. To guide this process, an Engagement Tool was designed as a ‘suitcase’ of activities. Aligned with the research questions, activities incorporated object-based and visual prompts, to encourage wider reflections, lateral thinking, and emotional intelligence to come to the fore. The tool was tested and refined following feedback discussions with facilitating Community Connectors.
Storytelling artist Sara Hurley worked with three participants to explore their experiences of end-of-life care in more depth. The storytelling process provides a meaningful exchange and listening frame, where the person sharing their experience is given back a personal creative piece that reflects their story, emphasising that it has been heard and valued, rather than simply received for the benefit of others. It also provides an opportunity to share experiences more widely in ways that are safe and anonymised. Sara Hurley created a narrative response based on participants’ verbatim and using actor’s voices, and also incorporating new poetry by poet Beth Calverley. You can listen to each of the stories on the audio-links below.
Next steps
We are now considering how these stories could be used, for example for training health and social care professionals or to advocate for better support services.
You can find out more about this project, the partners involved, and plans for the next steps in this research by Torbay Communities.
These personal stories are verbatim adaptations of longer conversations with people who cared for loved ones at the end of their lives. Each has its own poem inspired by a special song. They have been anonymised and are voiced by actors. The contributors have been closely involved in the process and hope that their story will go on to help others, and we would like to thank them for being willing to share their experiences and generously give their time.
The In-Between Guy (The One Who Can Deal With All Of This)
The story of a son who cared for his father at the end of his life. A palliative care nurse himself, he reflects on the very different and personal impact of caring for his father, and on the emotional difficulties faced by his wider family. His story describes the challenges of accessing the support his father needed, and the realities of caring for his father at home.
Secretary of the Illness
The story of a wife who cared for her husband at the end of his life. She reflects on relationships with different health professionals – on those who made the time to listen and get to know her husband, and those who did not. She describes the help and information she would have wanted, and the support she needed following his death.
Someone Like You
The story of a daughter who cared for her parents at the end of their lives. She describes the many barriers she faced trying to care for her parents, both in hospital and at home. She reflects on the personal and emotional cost, on her changing relationship with her parents and her wider family due to her caring role.
We are now considering how these stories could be used, for example for training health and social care professionals, or to advocate for better support services. 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 link: audio stories feedback form.