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The 100-year Life: End of Life, Death and Bereavement

The 100-year Life: End of Life, Death and Bereavement

An enquiry building on previous work funded by Marie Curie exploring the role of design in rethinking how we experience end of life, death and bereavement.

Funded by: Research England

Project lead: Helen Fisher, Claire Craig

The UK is undergoing a huge demographic shift. On average people are now living much longer and this trend is set to continue: by 2037 the number of people aged 65 and over will rise from 11.6 million today to 17.8 million. While this is a triumph of modern medicine and living standards, it will actually translate into more, increasingly frail, older people, with multiple health issues, who will need more care towards the end of their lives. More people will need personalised and tailored care in the future and most of this care will take place in the community, in people’s own homes and care homes, rather than in hospitals. Within the context of the 100 year life, a consideration of the role of design at end of life is important. Death is a key part of life and of the 100 year life.

This enquiry builds on the 2 year Marie Curie funded research project Design to Care. Claire Craig is working with the Michele Angelo Petrone to explore ways of supporting individuals diagnosed with life-limiting and terminal illness. Helen Fisher is working with the FLOW Academy (led by Sheffield Teaching Hospitals with representation from key organisations across the city including the Carers Centre, Age UK, Sheffield Alliance, MIND and other 3rd sector orgnisations) to explore the potential of design-led interventions in the context of carers and family members.

Future Care Home

This enquiry explores the role of design in reimagining the future care home. It focuses particularly on the role of design in the creation of research informed products to promote meaningful engagement between residents in the home, their families and care staff.  

Funded by: Research England

Project lead: Claire Craig, Helen Fisher, Tom Maisey

Partners: Kathryn Rawling, Sheff Care

Older people living in care homes have some of the most complex needs of society (BGS 2016). Whilst there is a high level of consensus that participation in meaningful activity leads to increased quality of life for older people (Han et al 2016, Wenborn et al. 2013) repeated studies have highlighted the limited opportunities older people living in care homes currently face when accessing this provision. Mozely’s study, for instance, identified in her study of 100 homes that 80% of the homes provided less than 6 minutes of activity per resident per day. A similar picture was presented in Hancock’s research (2006).

In response to this unmet need design researchers in Lab4Living have been investigating the development of ludic artfacts to support the wellbeing of older people (Craig, 2014, Craig, Chamberlain and Fisher, 2018; Fisher, Craig and Chamberlain, 2019 and Maisey and Craig 2016). To date, residents from over 10 care homes in Sheffield have participated in the study and a number of research informed products have been created. These are currently being evaluated.

The research raises questions about meaning and value in the context of the care home and the potential to re-imagine this space and the interactions that occur there.

Being part of this project has been an extraordinary and wonderful experience, you are transforming the lives of individuals I work alongside 

Sheff Care Member of Staff

Compassionate Conversations through Art

This enquiry explores how an archive of images created by artist Michele Angelo Petrone about the emotional cancer journey might be used to support the emotional needs of people living with a terminal illness. 

Funded by: Research England

Project lead: Claire Craig

Partners: Michele Angelo Petrone Foundation

Within the United Kingdom there are 2 million people living with a cancer diagnosis. This figure is estimated to rise to more than 4 million by 2030 and then to increase by approximately one million each decade between 2010-30. 

Whilst cancer care provides state of the science biomedical treatment there is a growing recognition that current services do not sufficiently address the psychological and social problems that a cancer diagnosis frequently brings. In a recent study it was found that 58% of people diagnosed felt that their emotional needs were not looked after as much as their physical needs (Healthy London Partnership, 2020). These feelings continue to the extent that even 10 years after treatment 54% of cancer survivors still experience one significant psychological issue and these feelings are not confined to the person living with the condition (Healthy London Partnership, 2016). 

Finding ways to enable individuals to describe their emotions and feelings is important. Michele Angelo Petrone was 30 when he was diagnosed with cancer. Treatment focused on his physical needs but neglected the emotional dimension of living with a life limiting illness. As an artist he began to express himself through is art and his exhibitions were found to offer people with cancer a language through which they could also articulate their experiences.

We have created a resource based on Michele’s work and we are seeking to understand how 3rd sector organisations working with individuals experiencing life-limiting illnesses might use Michele’s materials and whether they see any potential of the legacy of artwork that has been left.

Findings of this research will potentially feed into a growing body of work that highlights the potential of museum collections and object handling sessions in promoting wellbeing through evoking personal connections as well as eliciting aesthetic and personal responses.

Most of all I need to know, that you know, that within my body there is me

Michele Angelo Petrone

Compassionate Sheffield

​A project exploring what makes Sheffield ‘compassionate’ when it comes to end of life care.

Project lead: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Sheffield City Council

Compassionate Communities are networks of support comprising of family, friends, neighbours and community members; they are the foundation of what matters most to those undergoing experiences of death, dying, loss and care giving. A Compassionate City builds on this, covering the civic aspect of our lives; how we can become engaged in compassionate activities in the workplace, churches and temples, our educational institutions etc. Lab4Living are working with the council and organisations across the city to achieve a Compassionate City status in line with the Compassionate City Charter.

Photography in care homes

Project team: Claire Craig

Funded by: Royal College of Occupational Therapists, Higher Education Academy

Globally the population is ageing and the fastest growing demographic are individuals who are aged eighty-five and over (WHO, 2011). Whilst these individuals represent a significant proportion of the older people who currently live in care homes the voices of frail older people are missing from much of the care home literature. In part this is because their complex needs make it difficult for researchers using traditional qualitative methods to elicit their experiences.  

This enquiry sought to redress this balance by exploring the potential of photography as a method in care home research. This is important because if designers are to create environments that support the physical and emotional needs of individuals it is important to understand the life world of older people living in these environments.

This study was undertaken across three care home sites in the North of England. Strand one of the research utilised ethnography to build understanding of the broader cultural and organizational factors associated with photography in the care homes studied. In strand two older people were invited to take photographs of their day-to-day experiences of living in the home. The themes were analysed using an interpretative phenomenological method. The themes identified through this analysis were then embodied in a series of photographs and these formed the basis of a further interview with participants.  

The method was found to have a number of strengths: older people expressed their enjoyment of taking photographs and of sharing and talking about these, the concrete nature of the photographs helped to prompt memory recall and offered a tangible reminder of themes or issues participants wished to discuss. Through this method older people participating in the study described the multiple transitions they faced and the challenges of simultaneously navigating this new environment whilst also making sense of the ‘alien’ body they now inhabited. The life world of the older person was conceptualized as betwixt and between place and space, being in time and out of time, between hope and despair.  

A number of key findings relating to how the design of these environments contributes to quality of life were made. This work has informed a national resource for older people living in care homes. 

Ethical Roadmap

Ethics are moral principles that govern the choices individuals make. They seek to resolve questions of human morality by defining concepts such as good and evil, right and wrong, virtue and vice.

Project team: Claire Craig, Helen Fisher

Funded by: EPSRC

Partners: Northumbria University (Lead) / Newcastle University / BBC / Marie Curie / CRUSE Bereavement / National Council for Palliative Care

Within the broader research context each discipline subscribes to its own ethical code. These are often manifested in frameworks, which set out expectations and behaviours that teams engaging in research are required to follow.  

As the potential of design to address societal issues and questions becomes increasingly recognized a growing number of design researchers are working in fields related to sensitive areas including research with people with dementia, research in care homes and in end of life care. Some researchers may be under-equipped to manage such complexities, which may place participants, stakeholders and researchers alike at risk in a variety of ways. These situations also necessitate engaging with frameworks and systems of governance that designers may be unfamiliar with e.g. those developed by health-care research.

This enquiry focused on the development of an ethical roadmap to support the discussion and enactment of ethical practices in design research. 

Academic disciplines operate within publicly defined ethical parameters created to support researchers through complex dilemmas. However, paradigms in interdisciplinary research, a growing focus on emancipatory and participatory methods and questions relating to an ethic of technology call for a rethinking of existing frameworks which are largely predicated on bioethics.  

This enquiry focused on the development of an ethical roadmap to support the discussion and enactment of ethical practices in design research. The resultant research-informed roadmap guides design research teams in navigating and understanding the broader ethical and moral decisions that research inevitably entails. 

Coffee Table Conversations

This research explored the role of design in re-imagining patient information. During a previous enquiry, Journeying through Dementia, individuals living with the condition described how existing hospital information and leaflets reinforced a reductionist and medicalized view of the self. The research identified a need to create materials that were more personalized and could challenge the stereotypical images commonly associated with living with a diagnosis. 

Project team: Claire Craig, Helen Fisher

Funded by: National Education Scotland

Partners: Alzheimer Scotland

The team employed a participatory research approach, working with people with dementia and health care staff in Northern England and Scotland. The themes of the cards were determined through the research process and reflect the topics identified as being important. Decisions in relation to the images were made in partnership with people living with dementia.  

The resultant materials provide key information that can be shared with families but the design and style of these mean that they can sit comfortably on the coffee table, blending seamlessly with the home environment.  

These have found to be effective as a focus for conversation and as a mechanism to support engagement in meaningful activity. 

It makes such a difference having something blether about. The cards are beautiful. They aren’t hidden away but sit proudly on the coffee table. 

Participant

The 100-Year Life project

The 100 Year Life Project will exploit and advance the role of design research in enabling older people to lead longer, more productive lives – the longevity effect. Lab4Living has been awarded funding by Research England through their Expanding Excellence in England (E3) fund to support the strategic expansion of research in this area.

Funded by: Research England


Due to higher life expectancies the number of people expected to live to be 100 will increase significantly by 2066. The changing demographics and structure of the population will bring many challenges to society, the economy and services. However this will bring new opportunities for the emergence of new markets, increased involvement in volunteering, longer working lives and possibly providing care for family members. Individuals will need to plan their life and retirement differently with existing ideas of ageing being replaced with models of a multi-stage 100 year life (birth, education, work, education, training, work, career break, education and training).

Age related products, new housing models and care technologies which enable older people to lead more independent fulfilled lives will be considered within this project answering questions on what these products are, how multi-sectorial groups of people will work together, what standards and quality assurances are required for these products and services  and how this knowledge is shared across sectors.

“One in three children born in the UK today can expect to live to be 100 – and by 2066 one in two children will reach this milestone. We need to look at what this expanded life-span will mean for where and how people live; what products will they use; what the implications are for health care, communities, and, of course, the home.”

Prof Paul Chamberlain

Focusing on informing the scale and scope of the Future Home, the project will generate ideas for new aspirational products, protocols and interventions which meet the physical, cognitive and emotional needs of an ageing population within the Future Home.

Related news:

For more information, please contact Julie Roe, Project Manager E3, Lab4Living.

engagingaging

engagingaging was a transnational programme of research that sought to understand the needs, preferences and aspirations of older people in order to inform the design of products and systems to support independence and wellbeing in later life.

Funded by : 
British Council

Partners:
Chang Gung University, Taiwan.
University of the third Age

Project team:
Paul Chamberlain – Team lead
Claire Craig

engagingaging was a transnational programme of research that sought to understand the needs, preferences and aspirations of older people in order to inform the design of products and systems to support independence and wellbeing in later life.

‘Engagingaging was a fresh approach and broke the rules on what we normally expect from an exhibition. It dealt with some difficult and controversial issues in a friendly and accessible way’
Curator museum of Contemporary Art , Taipei, Taiwan”.

The concept of ‘The Exhibition’ is embedded within the culture of Art & Design and has a long history as a form of ‘gathering’ to prompt discourse. This research explores the role of the exhibition as a ‘theatre for conversation’ and its role and format as a research tool as well as a means of dissemination.

The research is based on the principle of engaging users through a programme of workshops, integrated with the exhibition, to illicit a better understanding of user-needs, which in turn inform design activity. The enquiry was predicated on the premise that older people offer a valued resource and asset to families, communities and society.
The starting point of the research, funded by the British Council, was a comparison of the experiences of older people living in the United Kingdom and Taiwan.

Within the exhibition a collection of furniture entitled ‘Stigmas’ embodied issues relating to the physical, cognitive and attitudinal challenges older people face in everyday life. The critical artefacts did not present solutions but posed a series of considered questions that illuminated the landscape of old age.

The engagingaging series of exhibitions has been hosted at a number of venues including: the Museum of Contemporary Art, Taipei; Building Centre, London; the Taipei Cultural Centre; and the SIA gallery, Sheffield, and underpins a collaborative project with Chang Gung University and Chang Gung Memorial Hospital, Taiwan (British Council PMI CONNECT funded).

Enabling Ongoingness

This research seeks to understand the benefits that design and digital technologies might bring in offering new ways to, firstly, express a sense of who they are in the present, and, secondly, to make objects and media content that will support other people after one’s death

Funded by EPSRC

Partners: Northumbria University; Newcastle University; BBC;  Marie Curie; CRUSE Bereavement; National Council for Palliative Care

Project lead: Claire Craig

Project team: Helen Fisher

The project is a design engagement with older people, people living with dementia, people approaching the end of their lives and people who are bereaved.

We are living in a time when life expectancy is the highest it has ever been (81.5 years average life expectancy in the UK).

However, this positive achievement of medicine and modern ways of living means that as the nature of growing older is changing, so too is end-of-life. Whilst promoting the inclusion of older people in society enriches our social make-up it also gives rise to new challenges.

For example, there is an increasing demand for care, but reductions in resource available to support the older old and a reduction in people using local authority supported care services.

In terms of bereavement, studies have identified a huge hidden cost associated not only with increased mortality of the bereaved but also their increased hospital stay and bereavement-related consultations. In Scotland alone this hidden and latent cost translates into £20 million per year.

Of the 500,000 people who die each year in the UK, currently around 92,000 die with unmet needs for palliative care. The increasingly complex needs of more people who are living longer with life-limiting conditions is positioned by Hospice UK as a current grand societal challenge as the demand for care at the end of life is set to rise steeply between 2016 and 2025.

“This research addresses the big questions to interrogate the meaning of life and death in the digital age”

(Ongoingness participant).

Personal digital content and assets are continuously being created, by us and around us. Through social and personal media we are creating status updates, voice recordings, conversations, videos, photographs and blogs which all contribute to the coalescence of a digital trail and identity. However, what we cannot purposefully do is curate these digital assets to specifically support a sense-of-self, help people deal with their own approaching end-of-life, nor help others deal with bereavement.

This research study therefore seeks to work with individuals facing major life transitions to help curate their digital content through a creative process to embed this within a series of personal digital artefacts that the person will own and which will support them at points of transition (e.g. following bereavement, managing a long term condition).