We are all aware of the headlines about the impact of government austerity measures on communities up and down the UK. But what impact has austerity had on people’s experiences of dying and, specifically, their ability to die in their own home? What is it like to be facing death in materially constrained circumstances in the UK? We think these are important questions and we have been awarded a large, 3-year grant by the Economic and Social Research Council to explore these issues, starting in September 2019.
Dr Naomi Richards of the End of Life Studies Group will be leading the grant, alongside colleagues Professor Merryn Gott from the University of Auckland, New Zealand and Dr Emma Carduff, Research Lead at the Marie Curie Hospice in Glasgow.
The main aim of our research is to examine barriers to, and experiences of, home dying for people living in poverty in the UK in both urban (Glasgow) and rural (Dumfries & Galloway) areas.
Most people would prefer to die at home and in most cultures this is seen as a marker of a ‘good death’. Whilst there has been recent success in some countries, including the UK, in increasing deaths at home, these gains have not benefitted everyone. People from more socio-economically deprived areas in the UK have been shown to be less likely to die at home compared to patients from less socio-economically deprived areas. People from socio-economically deprived areas are also less likely to die in a hospice and to access specialist palliative care. However, the reasons for this are not known.
Our project – Dying in the Margins – aims to uncover those reasons and to find out what it is like to die in the UK in an age of austerity.
We will use research methods specifically chosen to foster participation among disenfranchised groups. These are: photo-voice; digital storytelling; professional photography; interviews; focus groups and observation.
This project aims to pioneer creative and ethically sensitive methods of working with those who have lived experience of socio-economic deprivation. We will harness the expert knowledge and insights of our research participants in order to propose solutions to address long-standing inequalities in the dying experience.
Dr Naomi Richards is the Principle Investigator on this award: “We have a real chance with this project to learn about the experiences of people who are dying in severely financially constrained circumstances. We know that poverty and inequality are increasing across the UK, but there is no research into how this effects people’s experiences at the end of life. We will be working closely with participants in rural Dumfries and Galloway and in inner-city Glasgow who are at the end of their lives to help them to document their experiences in the form of images. Images are incredibly powerful tools for agitating for social change and we aim to harness their power in order to reduce persistent inequalities around dying.”
Co-Investigators on the project are Professor Merryn Gott from the University of Auckland, Director of the Te Arai Palliative Care and End of Life Research Group, the only bicultural palliative care research group internationally https://tearairesearchgroup.org/, And Dr Emma Carduff, who is working at the interface between palliative care and research as Research Lead at Marie Curie Hospice, Glasgow.
If you would like to be involved in the project, please contact any of the named Investigators. We will posting here as the project progresses, so watch this space!