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

Lead Research Organisation: University of Glasgow
Department Name: School of Interdisciplinary Studies

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.

Planned Impact

Poverty is on the rise in the UK, with one in five currently experiencing income poverty (JRF 2017). As numerous recent articles and reports have emphasised, very little is currently known about the lived experiences of people dying in poverty, and consequently unequal access to home death and specialist care has not been effectively addressed and is, in fact, increasing (Gao et al. 2013; Sleeman et al. 2016; Scottish Partnership for Palliative Care 2018). Findings from this project will generate significant real-world impact in both instrumental and conceptual ways. First and foremost, findings from the research will be used to inform decision-makers, healthcare providers and commissioners of services about the types of housing issues, barriers to home dying, and ultimately barriers to achieving a 'good death' faced by those living in socio-economic deprivation. Innovative solutions discovered through our ambitious programme of work will be directly informed by the strengths and strategies of individuals and carers with direct experience of living and dying in poverty. These will be discussed with a wide spectrum of stakeholders, including politicians and clinicians, during the 'consultation' phase of the research, with the aim of encouraging stakeholders to take ownership of the findings and move to implementing changes to policy and service provision. This consultation phase will immediately follow the launch of a high-quality, high-profile and sensitively co-produced exhibition at the Scottish Parliament and in central Glasgow, in collaboration with Marie Curie, which will generate significant media coverage. We also aim for the various image-based 'reusable learning objects' created to find widespread usage internationally in education programmes for health and social care professionals. The research will help to forward the public health agenda in palliative care, which seeks to make dying 'everyone's business'. Ultimately, we aim to reduce the stigma and social isolation for all who are facing the end of their life, or someone else's life, and specifically those who do so from a position of extremely limited resources.

The non-academic beneficiaries of the project are extensive: individuals and families directly participating in the research; people living in areas of socio-economic deprivation in the UK and internationally; policy-makers and advocacy organisations (e.g. Marie Curie; Scottish Partnership for Palliative Care; Dying Matters coalition), poverty (e.g. JRF) and housing focused organisations (e.g. Shelter); health and social care professionals, especially those working in palliative care (GPs, district nurses, aged care sector); and the public, who are all facing their own mortality, or living with the effects of bereavement.

Our plans for generating impact include: close involvement of the PPI group and a detailed 'process evaluation' throughout the lifecycle of the research to ensure user views are kept front and centre and any impacts on participants are understood and recorded; major launches of our 'portable' exhibition of visual outputs with multiple stakeholder consultations to discuss the policy and service implications of the research; a dedicated and expertly curated project website to help disseminate outputs internationally; an 'easy read' briefing paper summarising findings and disseminated to end of life, housing and poverty organisations; generation of significant media coverage to raise public awareness; and working with health and social care educators about ways of incorporating the reusable learning objects generated into relevant curricula and thereby influencing the perspectives of those providing front-line end of life services. Images are pervasive in contemporary culture and are regularly shown to mobilise action where words alone do not. The visual outputs, which will have both emotional power and versatility, will have long-term usage in learning environments around the world.

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