Introduction

The Design to Care research enquiry sought to build understanding of what constitutes good end of life care and the contribution that design can make to this. Initially we had assumed that the work would focus on hospital services. However, a mapping event with experts in policy, clinicians and family members highlighted the importance of reframing death as a social rather than as a purely medical even. As a result, the community became the focus of our research.

The research culminated in the Life Café, a research informed product comprised of curated creative activities that enables individuals to engage in conversation about what matters in life, in care and in end-of-life care.

The extent to which the research enquiry introduced a new way of thinking about something or its distinctivness.

This Marie Curie funded project arose in response to the recognition that existing palliative and end of life care services were not equipped to cope with the increasing number of individuals who are dying from multiple complex conditions.

Demographic shifts were placing increasing pressure on existing services. When the research began it was estimated that in the United Kingdom, the number of people requiring end of life care services would increase by 20% over the next 5 years.

A number of reviews had found that only 50% of bereaved relatives felt that their loved one had died in their place of choice and that 40% of family members had not received the dignity or care they deserved.

In light of the size and complexity of this challenge, design is well placed to address the issues facing services that address end of life care.

Previous design research in the context of end-of-life care had focused on environmental design with repeated studies highlighting a paucity of design research in relation to improving services.

The thoughTful and systematic way the question was addressed through the research enquiry.

The research sought to address the following questions:

What are the characteristics of good care?
What constitutes good end of life care?
What is the role of design in supporting good end of life care?

Taking the method of ‘exhibition in a box’, a form of object elicitation developed by Chamberlain and Craig (2013) as the starting point this study curated a series of creative activities, named the ‘Life Café’ to scaffold thinking and to prompt conversation.

One hundred and forty-one people were recruited from community groups and faith-based organisations including: the Salvation Army, Age UK, Police and Fire Service, local older people’s groups and groups from BME communities.

Each session followed an identical structure. After giving written consent, participants were invited to participate in the creative activities that comprised the Life Café. These included interactions with objects to stimulate conversations, word cards, and activities focusing on elements considered important in the context of life and care.

The consent process included permissions to video record/tape the workshop and these recordings were transcribed and analysed using thematic analysis.

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The research highlighted several key factors that contributed to quality of life at end of life and particularly the importance of relationship-centred care. Of particular significance was the feedback in relation to the need to have more conversations about death and dying at a much earlier point in life (before chronic illness struck) and the value that participants had found in engaging in the activities of the Life Café. Indeed, the Life Café was regarded as an important product to promote conversations about end-of-life care and meaning.

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The extent to which the work changes thinking or practIce.

The research highlighted the value of design in supporting complex conversations about difficult topics relating to care and meaning in life and at end of life and highlighted the value of design in this space. The enquiry demonstrated the value of creating space for individuals to challenge the taboo that surrounds conversations about death and dying.

Findings of the research were disseminated through papers, presentations, and exhibition at conferences in design, in health and in palliative care across the UK, Europe, New Zealand and Canada. The work was also shared through panel discussions linked to a tour of the Fighting for Life play in London and Yorkshire.

Participants and community groups who were part of the research, adopted the Life Café as a tool for continued conversations about life, care and end of life. A version of the Life Café named the Care Café was developed specifically for the Care Home Sector following feedback about the value of the work. Marie Curie adopted the product, offering it for sale. The Life Café is being used across the care sector to support meaningful conversations and as a tool to support staff training and delivery.

“Our iterative methodology of using resources and artefacts, analysing data, generating themes, then modifying the resources has been a form of behind-the-scenes co-design.”

Claire Craig, Co-Director Lab4Living

Resources and Links

Project Page – https://lab4living.org.uk/projects/life-cafe/

Website – https://www.lifecafe.org.uk

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Life Café

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