Demystifying Death Awards 2023

Creative Innovation Shortlist - University of Dundee Scottish Centre for Comics Studies

Since 2016 the Scottish Centre for Comics Studies has undertaken a project to research and create public information comics, and, more broadly, the use of comics for educational purposes. This partnership-based research responds to the core mission of the University of Dundee – to transform lives – by engaging the public and various partners (often charities) to produce comics that address a particular public information need. Many of these comics have dealt with healthcare issues, such as heart disease, mental illness, and topics such as organ donation. Over the course of this project we have been faced by the inevitable outcome of some of these conditions and issues – death.

While this can be a very difficult topic to confront, we have found that many of the partners and individuals that we have worked with have important messages concerning death and bereavement that they wanted to communicate. So, we produced several comics that addressed this theme. These include Close to the Heart (2020), by Dr Megan Sinclair, about her experience of losing her father to heart disease, and The Gift (2018), a project led by Mayra Crowe concerning experiences and policy regarding organ donation. This led to our work with charities such as Good Life, Good Death, Good Grief, and Children’s Hospices across Scotland, and culminated in two comics:

When People Die: Stories for Young People (2019), led by Dr Golnar Nabizadeh. This comic was the result of workshops with young people who had experienced bereavement and wanted to create comics to help other young people in similar circumstances.

Supporting Bereavement (2022), led by Mayra Crowe and Professor Christopher Murray. The aim of this comic, and all the comics we have produced that deal with this theme, was to highlight the importance of talking about death.

This is often a taboo subject, but we wanted to help provoke meaningful and helpful conversations about life and bereavement. One cannot exist without the other. The stories in Supporting Bereavement celebrated the work of the To Absent Friends Festival, highlighted the importance of finding ways of honestly talking about death with young people, and drew attention to the Bereavement Charter Mark for Scotland – a scheme that aims to support businesses and institutions in developing policies and practices that acknowledge the impact of bereavement.

Professor Christopher Murray, director of the Scottish Centre for Comics Studies, notes that comics are uniquely suited for communicating such themes. He says ‘Comics present information in a very clear and accessible way, combining words and images and using sequential narrative techniques in a way that allow the readers to connect with the characters and stories on both an emotional and intellectual level. Comics immerse readers in the story, but also allow readers to see and feel the emotions as expressed in the drawings, which are immediately comprehensible, but also, through thought balloons and captions, which can reveal what character are thinking, and how they tell their own stories. This can include opportunities for dramatic irony, or a tension between what is shown in images and communicated though words. This is the power of comics, and this can be harnessed to tell very impactful autobiographical stories, and to tackle difficult subjects, like death and bereavement, in ways that can inform, inspire and console.

The Scottish Centre for Comics Studies' Public Information and Educational Comics website can be found here.

Artwork above from Supporting Bereavement comic - top by Monty Nero, lower by Catriona Laird.

Read about the other Demystifying Death Award nominees here: Demystifying Death Awards Blogs

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

Read about the other Demystifying Death Award nominees here: Demystifying Death Awards Blogs

Increasing Understanding Shortlist - The Good Grief Festival

We at Good Grief Festival are delighted to be short-listed for a Demystifying Death Award! Thanks for the opportunity to tell you a bit about what we do and why we do it.

What we do – online and in-person

Good Grief Festival offers free virtual events that aim to spark conversations around grief and show that it is a painful but important aspect of human experience which needs to be understood, respected and supported. Good Grief events bring people together to gain insight and knowledge, hear stories they can relate to, and be part of a community. On YouTube,

our Grief Channel offers free and unlimited access to 100+ curated recordings, allowing viewers to create their own grief toolkit and access information, support and solidarity whenever they need it. Since our first festival, we have now welcomed 27k people to our events, with our recordings watched 210k times on Vimeo and YouTube.

Through Good Grief Connects and our work with the Weston-super-Mare Community Network we are also extending our in-person activities; as part of the latter project, from 1^st-8^th May this year we are holding our first in-person festival, Good Grief Weston, a collaboration between Culture Weston, the University of Bristol and a range of people and organisations across sectors in Weston-super-Mare. In 2023 we will also be launching our new online Grief Hub – watch this space…

How we started

Good Grief was founded in 2020 by Dr Lucy Selman, Associate Professor in Palliative and End of Life Care and the co-lead of the Palliative and End of Life Care Research Group at the University of Bristol. Having experienced the death of her father during her teens and the stillbirth of her daughter Ada in 2018, Lucy is passionate about changing the way society thinks and talks about grief and bereavement. Over the past 4 years she has brought together a huge range of people – members of the public, academics, counsellors, authors, artists and creatives – to collaborate on Good Grief Festival. These include key members of the Good Grief team: Arts and Culture Lead Dr Lesel Dawson (an Associate Professor in University of Bristol’s English Department), Event Director Aisling Mustan and producer Katrin Helene-Deeg.

Challenges and successes

One of the key aims – and challenges – of the festival was to find ways to reach people who wouldn’t normally come to academic or grief-related events and to initiate and sustain an inclusive conversation about death, dying and bereavement. We didn’t want to create a festival which was only relevant to and engaging for white middle-class professionals. From the beginning, we sought to keep our content free and accessible, aiming to offer something for everyone. The diverse programmes we create cover topics from Harry Potter to wild-swimming; feature big names in music, comedy and literature; unpack grief concepts and current research with accessible talks; and target practical issues that affect bereaved people, such as how to manage grief during the holidays. We have also included sessions on forms of grief that are often stigmatised, such as bereavement due to suicide, drug overdose or knife crime.

Why is our work important?

Good Grief embodies a public health approach to end-of-life and bereavement support, aiming to support the public in three key ways:

• Shifting the conversation. Each year in the UK, over 3 million people are bereaved. Yet as a society we continue to struggle with talking about death and grief: in 2022, 32% of UK adults said they didn’t know how to start a conversation after a bereavement, and 60% of bereaved people reported that their community had not helped them deal with their grief. Good Grief aims to provide space for people to reflect on mortality and loss, grow in confidence, and share their experiences.
• Providing information. After a bereavement, many people ask themselves ‘Is this normal?’ Grief can make you feel so many unexpected things – from anger and guilt to a loss of identity – yet these complexities are not often discussed, as if grief is something to be ashamed of. Good Grief works to widen access to research and scholarship and increase knowledge of grief and bereavement, demonstrating along the way that there are many different ways to grieve and to support someone who is grieving.
• Build community. While professional bereavement support can be really helpful, long waiting lists are common and the cost of private counselling is prohibitive for many. There are also known barriers to accessing appropriate support if you are from a minoritised ethnic community or are LGTBQ+. Free, online and open to all, Good Grief welcomes everyone, providing information, inspiration and understanding in a safe and affirming environment which shows us that we are not alone.

You can follow Good Grief on Instagram, Twitter and Facebook. We are grateful to all our collaborators and supporters including Good Life, Good Death, Good Grief, and to our funders including the Wellcome Trust, Marie Curie and the National Lottery Foundation.

Read about the other Demystifying Death Award nominees here: Demystifying Death Awards Blogs

Increasing Understanding Winner - Kathryn Mannix

Kathryn Mannix worked in palliative medicine for 30 years, before taking early retirement to campaign for better public understanding of, and preparation for, dying.

Her first book, ‘With The End in Mind’, tells stories about how people live while they are dying. It became a best seller and has been translated into sixteen languages so far. Her second book, ‘Listen: How to Find the Words fo Tender Conversations’ was written during the first year of the Covid-19 pandemic and explores the art of participating in conversations that may feel emotional, frightening or daunting.

Dr Mannix has been busy with broadcasting, writing and lecturing ever since, and has discovered there is a public appetite for clear information and models for important conversations.

Her BBC Ideas video ‘Dying is not as bad as you think’ has had over three million views. She uses her significant Twitter following to raise awareness, share information on practicalities, and model supportive communication. Her books have become recommended reading for medical and nursing students, helping to prepare new generations of professionals to care for people who are dying.

As well as her individual endeavours, Dr Mannix supports and works alongside others in the field to promote greater knowledge and understanding around dying including delivering training, lectures and contributing to various education and planning ahead projects.

Read about the other Demystifying Death Award nominees here: Demystifying Death Awards Blogs