LeftPhoto by Juli Vo on Unsplash. Right Photo by Gary Ellis on Unsplash.
Over the last three years, through my work as a Research Associate on the Dying in the Margins study, I have come to understand the ways in which financial hardship can shape end of life experiences. For the Dying in the Margins study, we aimed to recruit participants across Dumfries & Galloway and Greater Glasgow but, despite several promising leads, we were only successful in recruiting in Glasgow. Our involvement in a new Marie Curie-funded multi-sited research study entitled ‘Unreached’ (2024-2025) presents an opportunity to enhance our understanding of how rural poverty influences end of life experiences.
The visual and interview data we collected for Dying in the Margins gave us an excellent understanding of the challenges posed by living in an urban area while experiencing financial hardship at the end of life. Urban environments which can be subject to noise pollution, crime, cramped living conditions, and lack of access to green spaces, can exacerbate the distress of individuals nearing the end of their lives. Our participants reported issues with noise from roadworks, the presence of mould in poorly maintained social housing, and feelings of insecurity due to high crime rates. While this focus provided valuable insights into the urban experience, we now want to examine the rural picture, where different environmental and social factors could significantly impact end of life care.
Existing literature, including a systematic review by Rainsford et al (2017), highlights the unique challenges faced by rural residents, such as extended travel distances (Lockie et al, 2010), limited healthcare resources (Hansen et al, 2012), and profound isolation (Duggleby et al, 2010), which can severely impact access to care and support (Rainsford et al, 2017). Our project aims to build on this foundation, expanding the understanding of how rural contexts influence end-of-life care and addressing gaps in our current knowledge base.
We now have the opportunity to expand on this knowledge base through the University of Glasgow End of Life Studies Group’s involvement in a new multi-site research project entitled ‘Unreached’ – the impact of financial insecurity and socioeconomic deprivation in rural and urban areas, and funded by Marie Curie.
The main aim of the Unreached study is to explore the experiences of people living with serious advanced illness (including the last year of life) and family carers struggling financially, in both urban and rural areas in the UK. Dr Naomi Richards and Dr Sam Quinn will be leading the research in Scotland, which will consist of 20-30 qualitative interviews with people living with a serious advanced illness and their carers residing in rural and island communities. Interviews will take place face-to-face, by phone, or over the Internet.
Interviews will capture day-to-day experiences; coping (both practically and emotionally); costs incurred; and the perceived need for information and support. We will explore if community/peer support is available and, if so, investigate how this is accessed and received.
We are looking for participants who are:
- living with a serious advanced illness or caring/has cared for someone with a serious advanced illness,
- who are struggling financially,
- live in a rural or island community,
- are over the age of 18 and can give informed consent.
If you or someone you know fits this description and would be willing to discuss the project further with a researcher, please get in touch.
The recruitment and data collection for ‘Unreached’ started in June, with data collection running for one year.
If you would like to know more about the study or are interested in being involved, please contact Dr Sam Quinn. Email: Sam.Quinn@Glasgow.ac.uk Tel: 07484 006217