Dying in the Margins – Reflections

The ESRC-funded Dying in the Margins study officially ended this week after 4 years (31^st 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 exhibition ‘on the road’ to other venues and audiences.

Reflections from Dr Naomi Richards, Principal Investigator on the study

Over the last four years I confess to feeling rather jealous when I heard from colleagues about their theoretical studies or creative writing projects where it was just them and the page or screen in front of them. Undertaking this complex empirical work has challenged me in so many different ways that at times I wished I had designed a less experimental project and could hide myself away with just a blank page and my own thoughts to contend with!

Within 6 months of the project starting, the global pandemic hit and the UK went into its first lockdown. I had no idea how to manage a project in this context and for many, many months I felt that I was flailing around, looking for guidance about what to do, but that nobody had any answers to give.

I tried to keep going and provide support and motivaton to the team and most importantly for the project’s first post-doctoral reseach assistant, Dr Jane Rowley. But everyone’s attention was elsewhere and getting people excited about our study was an impossible feat. The seemingly insurmountable recruitment challenges in the new context of Covid meant Jane felt she couldn’t continue. Jane did so much to help get us set up and establish our protocols and build those key early relationships. 

Even without the pandemic, I think recruitment to the study would have been difficult. As we have documented both in the academic literature and in our resource directed towards practitioners and clinicians, being open and honest in talking about poverty, as well as about dying, presents a double whammy in terms of sensitivities. It seems likely we would have always faced reluctance and reticence from all-important gatekeepers.

With the pandemic and the virtual collapse of primary care, which is still now wholly changed and struggling to cope, we found our planned routes to recruitment were no longer available (in spite of weekly call rounds to around 20 GP practices!). We are so grateful to the Marie Curie hospice in Glasgow and our key champions there for turning things around for us, explaining the project to their patients, and building confidence amongst other gatekeepers. Dr Sam Quinn came on board at this time and provided new energy and passion to get things moving. Once the ball was rolling and people could see the images and the insights being generated, confidence increased amongst our recruitment partners, and more referrals started coming in.

We used visual methods in the study which have rarely been used in end of life research. It is hard to recruit people at end of life into qualitative research studies, and researchers may be reticent to add a visual component to their methods if they perceive that they may incur further challenges as a result. They may also be concerned that using a camera or being photographed may be beyond the abilities and interests of people with waning energies who are nearing death.

We have explored our experiences using our chosen visual methods in a paper here. Ultimately, our experiences are that use of visual methods does further reduce the numbers of willing participants, but that the engagement from, and insights generated by those who do agree to take part are enhanced. In terms of policy advocacy, the outputs of these methods may resonate more powerfully with the public and policy-makers which is an important consideration.

There are clearly sensitivities in dealing with data which can’t be anonymised. We developed a rigorous consent procedure so that participants knew we would be using the images publicly for the purposes of political agitation and raising awareness. But the research team bears the responsibility of creating a context where participants’ images, or professional images taken of them, help to increase public understanding, rather than contribute to stereotypes, poverty-shaming, or some kind of ‘poverty safari’, to use Darren McGarvey’s expression. 

Evidence from the public exhibitions in the form of visitor feedback suggests we have done ok in this regard and achieved our aim to raise awareness for people who are under-served by current systems. We are in the process of publishing findings from the exhibition, separate to our main article sharing our results from the study – watch this space for both articles.

My main point here is that the responsibility to represent participants’ stories in a way which is sensitively handled, avoid stereotypes, and does justice to them as individuals, rather than just using them to illustrate a specific policy recommendation, has weighed heavily on me in the latter part of the study, with a nagging sense that I may never know if we got the balance right.

The final reflection I’d like to make is about participatory research in this field of end of life and palliative care. I remember when Jane first started our critical review, the first thing we noticed was the almost complete lack of studies which prioritised the perspectives of people who were themselves experiencing poverty at the end of their lives. There was a remarkable dearth of in-depth qualitative research, let alone qualitative research underpinned with a participatory ethos. The reason this gap exists still isn’t as obvious to me as the reason for researchers’ reticence to draw on visual methods.

I do see now that participatory studies are incredibly time and labour intensive, as well as leaving you open to criticisms of not being participatory enough. Maybe this dissuades people. But I am more committed than ever, seeing the results of our study, to design participatory studies and to help build the confidence and capacity of other researchers to do so. The field desperately needs to hear more ‘from the margins’.

Reflections from Dr Sam Quinn, post-doctoral Research Associate on the study

My first, and perhaps most important reflection on the Dying in the Margins study is the bravery, selflessness, and innovation of our participants. Living with a terminal illness and then sharing your experiences of financial hardship through images and letting a professional photographer into your life is no small feat. Many people would, and did, say no and chose to focus on spending time with loved ones or trying to get by. However, every person who participated in this study, despite their challenging circumstances, took control and showed us their life through a camera lens. Their courage and willingness to share their experiences with us was truly incredible and humbling.

Second, is the importance of self-care. Working with people at the end of life can be a challenging prospect, whether you’re a researcher, healthcare professional, or work in the social sector. Seeing people in such challenging circumstances, often exacerbated by an unfair system, can weigh heavily. A question that I am asked often is “How do you look after yourself?” It is a testament to the incredible response to the Cost of Dying exhibition that people not only asked about the participants and their families, but also the well-being of the research team. Self-care isn’t always easy or convenient, and different approaches work for different people (mindfulness isn’t for everyone!). However, even simple things like getting out into nature and spending time with loved ones can do wonders. 

My third reflection is that the scale of the challenges to improving services for people experiencing poverty at the end of life is vast. However, there are also many opportunities for improvement if we have the will to pursue change. Access to safe and comfortable housing with timely adaptations and repairs, help with energy bills, transport costs, access to a pension or an appropriate level of social welfare, support for single parents and family carers – all of these areas need to be improved. This is why we will continue to use the images in the Cost of Dying exhibition to lobby for change and support a policy agenda to improve services for those experiencing financial hardship at the end of life. 

Working as a Post-Doctoral Research Associate on the Dying in the Margins has driven me to apply for funding to lead further research in this area, particularly regarding what social housing providers can do to support people living with a terminal illness. Six of our eight photovoice participants were social tenants, and seeing firsthand how an unresponsive system and strict eviction policies posed huge challenges to participants and their carers was deeply impactful. I hope to lead an action research study to design interventions that can improve end-of-life experiences for people experiencing financial hardship.