Title: Dying in the Margins: uncovering the reasons for unequal access to home dying for the socio-economically deprived
Funder: Economic and Social Research Council

Abstract: The overarching aim of the research is to examine barriers to, and experiences of, home dying for people living in poverty in the UK in both urban and rural locations. There has been very little research, either nationally or internationally, which illuminates the relationship between socio-economic deprivation and end of life experience, including home dying, and this project seeks to redress this knowledge gap. For the purposes of this proposal, we will recruit participants who are both living in an area of socio-economic deprivation (as defined by the Scottish Index of Multiple Deprivation) and who self-identify as 'struggling to make ends meet' (language used by the Scottish Social Attitudes Survey 2015). We use the terms 'socio-economic deprivation' and 'poverty' interchangeably throughout this proposal. Our overarching aim will be achieved through addressing the following research objectives: 1. To understand the home environment and lived experience at end of life for people who are socio-economically deprived. 2. To examine, in a participatory way involving people who are socio-economically deprived and are at the end of their life, or recently bereaved: a) how the home environment is perceived, modified, and made use of over the course of the illness trajectory b) the influence of type of housing and material resources on end of life experiences and ability to die at home c) similarities and differences in experience within and between the urban and rural context. Our research will be undertaken within an appreciate enquiry framework which foregrounds the strengths and strategies people living in socio-economic deprivation bring to their experience of end of life. We are very cognizant of the potential stigmatising effects of poverty and have chosen our methods to promote inclusivity and foreground the agency of our participants to tell their own story in their own words and using their own images. In order to achieve Objectives 1 and 2 we will use participatory visual methods, specifically photo-voice and digital storytelling. These methods have been selected because of evidence which shows they can promote greater self-representation and enhance participation in research for marginalised groups (Bennett & Roberts 2004). To complement these methods, we will also engage a professional artist to work alongside the dying people and produce additional images. We have chosen to do this to enable participants to convey aspects of their experience they want to share, but were not able to capture photographically (for example, relating to emotions and feelings, or when for practical reasons they were not able to use their camera). A second aim of this additional phase is to provide high quality impactful imagery which can be used to represent the issues of inequality uncovered to various stakeholders, including the general public, in a way which is more likely to have an effect (Objective 3 below). In our previous research (New Dynamics of Ageing 2011) we found that the quality of the image did influence its impact upon external audiences and take-up by the media. However, crucially, participants themselves will retain control over the type of images taken and shown. 3. To initiate a public debate across a range of audiences and opinion-formers regarding the barriers to, and experiences of, home dying and to provide innovative solutions to reduce those barriers, using the voices, images and narratives of people living in socio-economic deprivation. There is considerable evidence supporting the value of images in knowledge translation and impact generation. There are no images currently in UK contemporary palliative care policy which speak to the experience of dying in circumstances of socio-economic deprivation.

Lay abstract: There is consistent evidence that most people would prefer to die at home and that this is seen as a marker of a 'good death'. Whilst there has been recent success in some countries, including the UK, in reducing hospital deaths and increasing deaths at home, these gains have not benefitted everyone. Notably, people from more socio-economically deprived areas in the UK have been shown to be less likely to die at home compared to patients from higher socio-economic areas, and this gap is widening. People from socio-economically deprived areas are also less likely to die in a hospice and to access specialist palliative care. However, the reasons for this are not known. Interviews with stakeholders in the consultation phase of this application suggested there is a pressing need for research which furthers understanding of the effects of poverty both on people's opportunities to die at home and their overall end of life experiences. In particular, there is a need for people with direct experience of deprivation and marginalisation to articulate, on their own terms, gaps in current support and potential strategies to improve end of life care for their communities. Our project responds directly to the calls within the literature for socio-economically deprived groups to become an explicit focus for end of life care improvement. We will examine barriers to, and experiences of, home death for people living in poverty in both urban and rural locations. Specifically, we aim to discover: 1) what the specific needs, wants and experiences of people dying in socio-economic deprivation are with regards end of life; 2) the influence of housing type, tenure, and suitability on enabling home dying for people living in socio-economic deprivation; 3) the health and social care innovations which might reduce inequalities, and 4) whether and how far our chosen research methods - participatory visual methods - can generate fresh insights into the dying worlds of the socio-economically deprived and support the translation of findings into practice and policy change. We will use photo-voice, digital storytelling, and the skills of a professional photographic artist, alongside more traditional word-based interview, focus group and observational methods to access the life-worlds and day-to-day experiences of people who are dying in poverty. Both the PI and Co-I (MG) have prior experience deploying these methods and witnessed the multiple ways in which they empower participants to take ownership of the process and the findings. In our previous research they have also generated reusable learning objects and impactful imagery which has shaped public and political opinion. We are therefore confident our choice of methods will enable the project to contribute to a political agenda which recognises the specific health and social care needs of poorer families. This ambitious project will result in multiple interlinked datasets which will be used in a rigorous and self-reflexive way by the project team. High-quality outputs will be developed to help educators, healthcare commissioners, politicians, professionals, and the general public, to reflect critically on the end of life care needs of everyone in society. Ultimately, this project will pioneer creative and ethically sensitive methods of working with those who have lived experience of socio-economic deprivation at the end of life, and harness their expert knowledge and insights, to propose innovative solutions to address structural and material inequalities.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE