Creative Innovation Shortlist - Dying in the Margins
Creative Innovation Shortlist - Dying in the Margins
The Dying in the Margins Study
The Dying in the Margins project began in 2019, with the aim of uncovering the reasons behind unequal access to home dying for people experiencing financial hardship and socio-economic deprivation in Scotland. The study is funded by the Economic and Social Research Council and the UKRI.
Over the past four years, we have worked closely with people experiencing financial hardship at the end of life, their carers, and health and social care professionals to understand the profound effect that people’s socio-economic circumstances can have on their end-of-life experiences.
Throughout the study, people with lived experience of financial hardship and serious advanced illness were supported to take images that tell their story of dying at home in Scotland. Award-winning Scottish photographer Margaret Mitchell was commissioned to create a body of work reflecting on participants’ stories and emotions. In addition, bereaved carers were supported to create ‘digital stories’ about their loved ones’ experience of financial hardship at the end of life, with help from filmmaker Lucas Chih-Peng Kao.
We are now launching a free public exhibition called the ‘Cost of Dying’ to showcase the photographs and digital stories produced through the research. The exhibition will take place at the University of Glasgow’s Advanced Research Centre. It is the first large-scale public exhibition to be shown in the University’s new Centre.
The exhibition represents the eleven stories of people who took part in the study. These participants and their family and friends let the research team into their lives at a difficult time and entrusted us with their stories and images.
Some of these individuals lacked a material environment or a care package conducive to a dignified end of life experience. We found that for those who had struggled on a low income their entire lives, terminal illness plunged them further into hardship. For others who were just about getting by, terminal illness brought new and unanticipated hardship and precarity. While the state offers a partial safety net in such cases, there are questions over whether this is sufficient to meet the needs for a comfortable end of life.
As people view this exhibition, we are asking them to think about what the NHS, housing associations, social work, and the third sector, as well as communities in general, should and could offer people who perhaps haven’t had the best chances in life. And what could be designed or distributed differently to ease people’s distress in the final months of their life.
The research team is working closely with Marie Curie to see how people respond to the exhibition images and stories and to see how the research can support concrete policy recommendations. Further exhibitions are planned over the next 6 months at the Mitchell Library in Glasgow (in June) and at the Scottish Parliament (in November).
Recruitment Challenges
The Dying in the Margins study began shortly before the seismic economic and social consequences of the Covid-19 pandemic and the cost of living crisis hit the country. The situation for people living on low incomes and nearing the end of their lives is far harder now, in 2023, than at the start of this research. We believe the project has become more relevant as a result.
Recruitment to the study was incredibly challenging from the outset. Understandably, health and social care providers had other priorities during the pandemic. The interests of people who are dying are sometimes fiercely protected by the professionals caring for them. The benefits of taking part in research are not always obvious. There was also some reluctance to recruit to a study which involved photography, for fear that it might be exposing.
We quickly discovered that the stigma and shame associated with experiences of hardship and financial precarity can sometimes prevent open discussion or acknowledgment of people’s circumstances. This can impede people from accessing the help they are entitled to.
In the end, a few key individuals supported and championed this study. It is down to them that we managed to get the referrals which made the study viable.
Research Methods
We used a combination of visual methods within the study, aiming to give participants the power to tell their own stories and highlight what matters to them at the end of life. Our methods have included:
Photovoice: Participants were given a camera to take photos of things that matter to them and discuss them with the researcher.
Documentary Photographer: We commissioned documentary photographer Margaret Mitchell to create images conveying aspects of their end of life experience.
Digital Storytelling: Bereaved carers were supported to create and record a short video and voiceover about their loved ones’ experience of financial hardship at the end of life.
Research Team
Principal Investigator: Dr Naomi Richards, Univerity of Glasgow, UK
Post-Doctoral Research Associate: Dr Sam Quinn, University of Glasgow, UK
Co-Investigator: Professor Merryn Gott, University of Auckland, New Zealand
Co-Investigator: Dr Emma Carduff, Head of Research and Innovation, Marie Curie UK
Photographer: Margaret Mitchell, Glasgow, UK
Exhibition producer: Oona Dooley, UK
Research Outputs
- Quinn, S. Richards, N. and Gott, M. (2023) Dying at home for people experiencing financial hardship and deprivation: How health and social care professionals recognise and reflect on patients’ circumstances. Palliative Care and Social Practice, 17. doi:10.1177/26323524231164162
- Richards N, Quinn S, Mitchell M, Carduff E, Gott M. (2023) The viability and appropriateness of using visual methods in end of life research to foreground the experiences of people affected by financial hardship and deprivation. Palliative Medicine; 37(4):627-637. doi:10.1177/02692163221146590
- Richards, N. (2022). The Equity Turn in Palliative and End of Life Care Research: Lessons from the Poverty Literature. Sociological Compass, 16(5); e12969. https://doi.org/10.1111/soc4.12969
- Rowley, J., Richards., Carduff. And Gott, M. (2021). The Impact of Poverty and Deprivation at the End of Life: A Critical Review. Palliative Care and Social Practice, 15, doi:10.1177/26323524211033873
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