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

Abstract

Background: Visual methods have been used extensively in social research to explore people’s experiences of structural disadvantage. This indicates that they may provide a useful research approach to understanding equity-related concerns within palliative care. However, little has been published regarding the use of visual methods with people at the end of life. Purpose of the paper: In this article we draw on our experiences of using visual methods to illuminate the end of life experiences of people experiencing financial hardship and deprivation in Scotland’s largest city. Evidence used to support the information presented: We present evidence from the published literature, as well as our own experiences of using visual methods to explore dying at home for people experiencing financial hardship and deprivation. Our analysis draws on two specific visual methods: photovoice and professional photography. Photovoice is a participatory visual method which involves enabling participants to take and discuss their own images and present them to different audiences to try to enact social change. We report our experiences as researchers, as well as those of our participants and recruitment partners. Key learning points: To successfully use visual methods, researchers need to invest significant time and resource in building a strong rapport with participants. There are also key ethical, practical and representational challenges to consider. A participatory framework should be adopted which ensures agency for participants in terms of image creation and public dissemination. Participants reported value in using visual methods in terms of legacy building and self-representation. Using photovoice (insider’s view) and professional photography (outsider’s view) together offered complementary perspectives, enabling a rich layering of stories and meaning. Our findings indicate visual methods can illuminate aspects of the end of life experience not captured by other research methods.

Reflecting on choices and responsibility in palliative care in the context of social disadvantage

“…Examples of research with marginalised or structurally vulnerable groups in Canada, Aotearoa/New Zealand and the United Kingdom show how this might be done responsibly and meaningfully. [54][55][56] Focusing on healthcare, there is limited evidence about how palliative care professionals understand structural inequity and its impacts on their actions, initiatives and decisions, although evidence from primary care and public health professions points towards some common discourses. As demonstrated by research from other fields, and emerging within palliative care, those involved in patient or person-centred activities within health settings often feel comfortable focusing on individual responsibility.…”

“…Examples of research with marginalised or structurally vulnerable groups in Canada, Aotearoa/New Zealand and the United Kingdom show how this might be done responsibly and meaningfully. 54 – 56 …”

The Cost of Dying Exhibition: public, professional and political reactions to a visual exhibition depicting experiences of poverty at the end of life

“…In the study itself, we used a participatory research design to enhance participant involvement in the research process (Richards et al 2023). However, we knew from the outset that the curatorial decisions could not involve participants or their carers.…”

“…The research team held several video calls about how these different types of images, as well as the digital stories, would be presented alongside one another within the same venue space. How images are juxtaposed changes their meaning (Metcalfe 2015), and there were particular sensitivities around juxtaposing images taken by participants to represent their subjective 'insider' perspective and the professional portraits taken with an artistic 'outsider' sensibility (Richards et al 2023). There were also deliberations about how much sociological context to give on the general topic of the structural determinants of dying, biographical and clinical details about each participant, and how much to let the images do the heavy lifting and allow for audience interpretation; in other words, how much didacticism to introduce.…”