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Dying in the Margins

This 4 year research project (2019-2023), supported by Marie Curie and funded by the Economic and Social Research Council, part of UKRI, aimed to examine people’s experiences of home dying in a context of financial hardship and deprivation in the UK.

There is consistent evidence that most people would prefer to die at home and that this is seen as a cultural marker of a 'good death'. Whilst there has been recent success in some countries, including the UK, in reducing hospital deaths and increasing deaths at home, these gains have not benefited everyone.

Notably, people from more socio-economically deprived areas in the UK have been shown to be less likely to die at home, and more likely to die in hospital, when compared to people from less socio-economically deprived areas.

Even during the Covid-19 pandemic, when home dying increased dramatically in the UK, there was still a significant disparity between people living in more and less deprived areas.

The Dying in the Margins study is the first study of its kind in the UK to use visual methods to explore experiences of home dying for people struggling to make ends meet.

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. In addition, award-winning Scottish photographer Margaret Mitchell was commissioned to create a body of work reflecting on participants stories and emotions.

The project generated imagery of end-of-life experience seldom seen or considered by society at large. A series of exhibitions held in 2023 were designed to inform the public conversation around improving the end-of-life care for those experiencing poverty and structural disadvantage. Exhibition viewers were asked the question:

What could be designed or distributed differently to ease people's distress in the final months of their lives?

Dying in the Margins - Project Logo

Colour ESRC Logo

Our Aim

The overarching aim of the research was to examine barriers to, and experiences of, home dying for people experiencing poverty in the UK in both urban and rural locations.

Our Objectives

1. To understand the home environment and lived experience at end of life for people who are socio-economically deprived.

2. To examine, in a participatory way involving people who are socio-economically deprived and are at the end of their life, or recently bereaved:

a) how the home environment is perceived, modified, and made use of over the course of the illness trajectory

b) the influence of type of housing and material resources on end of life experiences and ability to die at home

c) similarities and differences in experience within and between the urban and rural context.

3. To initiate a public debate across a range of audiences and opinion-formers regarding the barriers to, and experiences of, home dying and to provide innovative solutions to reduce those barriers, using the voices, images and narratives of people experiencing poverty.

There is considerable evidence supporting the value of images in knowledge translation and impact generation. There are no images currently in UK contemporary palliative care policy which speak to the experience of dying in circumstances of socio-economic deprivation.

Our Methods

In the study, we used a range of participatory visual methods, including:

Photovoice

Photovoice is a participatory visual method designed to engage and empower participants, promote dialogue and reach policymakers. Our research participants took photos of the things that were meaningful to them and their day-to-day experiences in their homes. These images were discussed with the researcher at various touchpoints. They were used to identify what matters most to participants, and any barriers or difficulties they were experiencing in their home environment.

Digital Storytelling

Digital storytelling is a form of co-production which offered people the opportunity to create multi-media narratives about an important life experience. Workshops traditionally comprise the following components: 1) oral story sharing and transcription; 2) script writing from the transcript; 3) story script editing; 4) story voice overs; 5) collection of images and videos; 6) story production; 8) editing; 9) approval of the final products. Each facilitated component is participant-led. Importantly, participants required little or no prior experience in digital media to create their stories.

For more details please visit our Digital Storytelling section here.

A Documentary Photographer

We commissioned documentary photographer Margaret Mitchell to work with participants who were dying and their families to create images to convey aspects of their experience they wanted to share but were not able to capture photographically themselves.

Public Exhibitions

Co-created images and digital stories were presented to, and discussed with, stakeholders at large-scale exhibitions at the University of Glasgow Advanced Research Centre, Mitchell Library and Scottish Parliament.

A short video about the Cost of Dying Exhibition at the Advanced Research Centre is available on Youtube.

Digital Stories

We have worked with bereaved carers to create short digital stories - 2-3 minute videos using images, music and voice-over. Each digital story shares a part of a bereaved carer’s experience and the experiences of those they cared for, using their own words.

Our digital stories are free to access and use. We want them to be used as widely as possible to educate and inform clinical and palliative care specialists, social care professionals, volunteers, as well as individuals in our communities who are carers or may become carers in the future. Each video also includes an accompanying toolkit which provides additional context, learning objectives and suggested discussion points.

Full transcripts for the digital stories are available on request.

Linda's story:

Linda's story is told by her daughter Nicola. Key issues in this story include the substantial costs that can be incurred when caring for people at the end of life and how the physical environment can be a barrier to home dying.

You can also download the accompanying resource: Linda's story toolkit.

Steven’s story:

Steven's story is told by his brother John. This digital story is about the complexities of the welfare system, the role of supporting agencies, and the importance of affordable transport.

You can also download the accompanying resource: Steven's story toolkit.

Barry's story:

Barry's story is told by his wife Jo. This digital story is about financial barriers to dying at home, the cost of private care, and resources that can help somebody with a serious advanced illness to die at home.

You can also download the accompanying resource: Barry's story toolkit.

Frank's story:

Frank's story is told by his daughter. Key themes in Frank’s story are the physical inaccessibility of the home affecting care provision, financial struggles in caring for a terminally ill family member, and the emotional impact on carers when unable to support a loved one to die at home.

You can also download the accompanying resource: Digital Story Toolkit - Frank

Feedback:

Your feedback is important to us. If you have any comments on our digital stories, please contact Dr Naomi Richards.

The Cost of Dying Exhibition

Data collection for the study commenced in 2021. Since then, the project has generated imagery of end of life experiences seldom seen or considered by society at large. This work has now culminated in a public exhibition: The Cost of Dying.

The exhibition brings together photographs taken by Margaret Mitchell, participants' own images, and digital stories. The exhibition is designed to inform the public conversation around improving the end of life care for those living with poverty and structural disadvantage.

Exhibition dates

Palliative Care Congress, Edinburgh International Conference Centre, 16 - 17 March 2023
Advanced Research Centre (ARC), University of Glasgow, 25 April - 5 May 2023
The Mitchell Library, Glasgow G3 7DN, 20 June - 19 August 2023
Scottish Parliament (MSPs exhibition), Holyrood, 14 - 16 November 2023

Exhibition Brochure

We invite you to read our Cost of Dying Exhibition Brochure which provides background on the study, more details about our participants and highlights key themes and findings.

Joint Briefing (May 23)

In May 2023, following the Cost of Dying exhibition at the University of Glasgow Advanced Research Centre, we worked with colleagues at Marie Curie to produce a Dying in the Margins Joint Briefing May 2023 containing policy recommendations for improving services for people experiencing financial hardship at the end of life.

Briefing for Members Business Debate (Nov 23)

The Dying in the Margins project team, in collaboration with Marie Curie, has released a MSP Briefing for Parliamentary Members Business Debate on 16/11/23, highlighting the urgent need for the Scottish Government to address end-of-life poverty by including terminally ill individuals in energy bill support, providing robust social security for them and their carers, and ensuring timely, affordable home adaptations.

Media

The Cost of Dying Exhibition has been covered by the following outlets and publications:

BBC News: The photos that chronicle the cost of dying
Big Issue: The devastating impact the cost of living is having on the cost of dying
Marie Curie: "Mum knew she was going to die, but she also didn't have any money to pay for anything"
Medium.com: The Cost of Dying: Margaret Mitchell, & Dying in the Margins at Glasgow University

Exhibition Images

Below are the images from the study which featured in the Cost of Dying Exhibition. This includes portaits by Margaret Mitchell, and photovoice by participants.

Money Matters at the End of Life Resource

Throughout our study, we observed that there can be discomfort and uncertainty among professionals about how to communicate effectively with people who are facing material or financial difficulties at the end of life.

To aid conversations and to support professionals working with people at end of life, we have developed a free resource called Money Matters at the End of Life: Having Open Conversations about Financial Hardship at the End of Life.

The new Money Matters at End of Life guide provides practical tips and guidance for health and social care professionals on how to initiate and conduct conversations about poverty and hardship with people who are terminally ill or bereaved, as well as signposting to relevant sources of information and support.

Policy, Reports and Impact

Dying in the Margins has been featured in the following policy documents and reports:

@Dying_Margins Twitter

Tweets by Dying_Margins

Project Outputs

Our Team

‌‌ Dr Naomi Richards

Dr Naomi Richards

Principal Investigator (University of Glasgow)

Lecturer (School of Interdisciplinary Studies)

Contact: Naomi.Richards@glasgow.ac.uk / 01387 702063

Dr Naomi Richards is Lecturer in End of Life Studies at the University of Glasgow. Prior to joining Glasgow in 2015, she held positions at the University of the West of Scotland and the University of Sheffield. Naomi is a social anthropologist specialising in death and dying, ageing and old age, and visual and ethnographic methods. Over the last decade she has been funded by the ESRC to undertake empirical and theoretical investigations into the UK right-to-die debate and the phenomenon of old age rational suicide. She is also involved in two Wellcome Trust funded case studies. The first examines the relationship between palliative care and assisted dying in three jurisdictions where the practice is lawful. The second examines the global transfer and translation of the Death Café phenomenon.

Dr Sam Quinn

Dr. Sam Quinn

Reseach Associate (University of Glasgow)

Contact: Sam.Quinn@glasgow.ac.uk

Dr Sam Quinn joined the End of Life Studies group in July 2021. He previously held the position of Research Fellow at the University of Edinburgh, School of Health in Social Science. Sam completed his Doctoral research on the end of life experiences of people with Down syndrome and Dementia in December 2019. This ethnographic work explored the experiences of people living and working in a group home for people with learning disabilities and dementia. Sam has worked on a range of qualitative research projects encompassing quality improvement in the third sector, frontline health staff experiences of working during COVID-19, and a project to facilitate discussions about risk with forensic inpatients with a learning disability.

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Dr Emma Carduff

Research Lead (Marie Curie Hospice, Glasgow)

Dr Emma Carduff is the Research Lead at Marie Curie Hospice, Glasgow. She trained as a nurse at the University of Glasgow and completed a Master’s degree in Public Health Research, then a PhD in research methods for palliative care research from the University of Edinburgh. Dr Carduff is responsible for facilitating, managing and leading research activity at the hospice and collaborates with academic colleagues nationally and internationally. Her particular research interest is the health and wellbeing of unpaid carers of people with terminal illness and she is Advocate Member for the International Palliative Care Family Carer Research Collaboration (IPCFRC) for Scotland. Dr Carduff is also passionate about ensuring equality in end of life experience for those in marginalised groups, including those living with socio-economic deprivation, homelessness and prisoners. In addition, Dr Carduff has experience of working collaboratively with patient and public involvement groups within organisations and those established for specific projects.

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Professor Merryn Gott

Associate Head - Research (Te Arai Palliative Care and End of Life Research Group)

Merryn directs the Te Arai Palliative Care and End of Life Research Group based at the University of Auckland. The group conducts multi-disciplinary bicultural research using creative social research methods to inform practice, policy, and teaching in palliative and end of life care both nationally and internationally. Merryn has been conducting research with older people for over 20 years and has a particular interest in developing models of palliative and end of life care to meet the needs of ageing populations. Her research programme has been supported by substantial grants from the HRC, UK Department of Health, Research Councils and Health Charities.

Glasgow End of Life Studies Group

Our Aim

Our Objectives