Between 2019 and 2023, I led a research study called Dying in the Margins. This was funded by UKRI and supported by Marie Curie. The study was an attempt to better understand the experiences of people dying at home in circumstances of financial hardship and deprivation in the UK. Uniquely, we used a variety of visual methods to capture… Continue reading
Access to quick and sufficient financial support can mean the difference between a dignified end-of-life and significant hardship for terminally ill people. However, recent UK government welfare reforms propose big changes to disability benefits, notably Personal Independence Payment (PIP), with tougher rules aimed at reducing welfare spending by around £5 billion annually by 2030. But… Continue reading
In March 2024, the summative findings paper for the ESRC-funded ‘Dying in the Margins’ study was published in Social Science & Medicine – Qualitative Research in Health. Our visual methods study shed light on the challenges of home dying in the context of financial hardship and deprivation in the UK. Utilising photovoice, professional documentary photography… Continue reading
To coincide with the display of the ‘Cost of Dying’ exhibition at the Scottish Parliament (14th – 16th November 2023), we present our final digital story; “Frank’s Story”. 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… Continue reading
This blog is written by Joost ten Wolde My wife, Stacey O’Brien, had a TP53 genetic fault; a condition which increases a person’s risk of getting cancer by almost 100%. This gene is linked to many different kinds of cancers. Stacey had cancer nine times in total: sarcoma in the leg, breast, lymph nodes, back,… Continue reading
The ESRC-funded Dying in the Margins study officially ended this week after 4 years (31st August 2023). Below are some of our reflections on this complex study. The various impacts of the work are still unfolding as Marie Curie continue to press for legislative changes at Holyrood and Westminster, and as we begin to take the… Continue reading
The aim of the Dying in the Margins research project has been to explore how socio-economic circumstances shape end-of-life experiences. Open conversations about financial hardship are important, and increasingly so in the context of rising poverty rates due to inflation and the cost of living crisis. Yet, throughout our study, we observed that there can… Continue reading
The Dying in the Margins study, a project exploring the way socio-economic circumstances intersect with end-of-life experiences, culminated in a large public exhibition, The Cost of Dying, held at the Advanced Research Centre at The University of Glasgow (25 April – 5 May 2023). Over the ten days the exhibition ran, we received an overwhelming… Continue reading
