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.

Keywords: Photography; data collection; financial stress; health equity; methods; palliative care; poverty; social deprivation; socioeconomic factors.

Figure 1.

Visual flowchart showing the method used with potential participants and recruiters. ©Dying in the Margins 2021 all rights reserved

Figure 2.

Photographer Margaret Mitchell returns to show photographs to a participant. ©Margaret Mitchell 2022 all rights reserved

Figure 3.

A participant shown taking photovoice images of a bag of chocolate puddings—the only thing he was able to eat—from his hospice bed. Left hand photograph ©Dying in the Margins 2021; right hand photograph ©Margaret Mitchell 2021 all rights reserved

Figure 4.

Participant Andy holds a jar of notes he wrote for his granddaughter in a portrait taken by photographer Margaret Mitchell. ©Margaret Mitchell 2021 all rights reserved

Figure 5.

Marie’s photovoice images. ©Dying in the Margins 2021 all rights reserved

Figure 6.

A participant’s photovoice image representing how her arthritis and osteoporosis prevent her from walking her dog, one of her favourite pastimes. ©Dying in the Margins 2021 all rights reserved

Figure 7.

A portrait of Marie taken by documentary photographer Margaret Mitchell. ©Margaret Mitchell 2021 all rights reserved