Dying in the Margins: uncovering the reasons for unequal access to home dying for the socio-economically deprived

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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.