Glasgow End of Life Studies Group

Dying in the Margins examined people’s experiences of dying at home in a context of financial hardship and deprivation in the UK. Most people wish to die at home, yet those living in more socio-economically deprived areas are less able to do so than people in less deprived areas.

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

This was the first UK study to use visual methods to explore home dying for people struggling to make ends meet. Participants with serious advanced illness and financial hardship used cameras (photovoice) to record their daily lives, and documentary photographer Margaret Mitchell worked with participants to create portrait and documentary images. We also worked with bereaved family carers to create digital stories about their experiences supporting a person experiencing financial hardship at the end of life.

We held exhibitions in Glasgow and at the Scottish Parliament in 2023, sharing these stories and asking audiences: What could be designed or distributed differently to ease people's distress in the final months of their lives?

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.  

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.

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

• Hospice UK. (2024). "It's a Nightmare Scenario": Death, Dying and Financial Hardship.
• Chief Medical Officer. (2024). Realistic Medicine - Taking Care: Chief Medical Officer for Scotland annual report 2023 to 2024.
• Dying in the Margins and Marie Curie Scotland. (2023). MSP Briefing for Parliamentary Members Business Debate .
• Dying in the Margins and Marie Curie Scotland. (2023). Dying in the Margins Joint Briefing May 2023.

Our Team

Dr Naomi Richards

Principal Investigator (University of Glasgow)

Senior 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

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.

Blunt, A. & Dowling, R. 2006. Home. Routledge; London.

Buck J., Webb, L., Moth, L., Morgan, L. & Barclay, S. 2018. Persistent inequalities in Hospice at Home provision. BMJ Supportive & Palliative Care, 0:1–8.

Davies JM, Sleeman KE, Leniz J, Wilson R, Higginson IJ, Verne J, et al. 2019. Socioeconomic position and use of healthcare in the last year of life: A systematic review and meta- analysis. PLoS Med 16(4): e1002782. https://doi. org/10.1371/journal.pmed.1002782

Dixon J, King D, Matosevic T, Clark C, Knapp K. 2015. Equity in the provision of palliative care in the UK: review of evidence. Personal Social Services Research Unit, London School of Economics and Political Science, London.

Gao, W., Ho, Y., Verne, J., et al. 2013. Changing Patterns in Place of Cancer Death in England: A Population- Based Study. PLoS Med, [online] 10(3), p.e1001410.

Koffman, J., Burke, G., Dias, A., et al. 2007. Demographic factors and awareness of palliative care and related services. Palliative Medicine. 21(2), pp.145-153.

Lewis, J.M,. DiGiacomo, M., Currow, D.C. & Davidson, P.M. 2011. Dying in the margins: Understanding palliative care and socioeconomic deprivation in the developed world. Journal of Pain & Symptom Management, 42(1):105-118.

Macfarlane, M & Carduff, E. 2016. Does place of death vary by deprivation for patients known to specialist palliative care services? BMJ Supportive & Palliative Care, 0; 1-2.

Wang, C. & Burris, M. 1997. Photovoice: concept, methodology, and use for participatory needs assessment. Health Education Behaviour, 24(1): 369-387

Williams, L., Gott, M., Moeke-Maxwell, T., et al. 2017. Can digital stories go where palliative care research has never gone before? A descriptive qualitative study exploring the application of an emerging public health research method in an indigenous palliative care context. BMC Palliative Care, 16