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The 100-Year Life project

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.

GRIP: Promoting exercise after stroke and transient ischaemic attack

This project, funded through the Getting Research into Practice (GRIP) programme, explores ways to promote exercise in stroke survivors living in Sheffield (UK), using co-production workshops.

Funded by:
Getting Research into Practice (GRIP) funding programme through National Institute for Health Research Collaborations for Leadership in Applied Research and Care Yorkshire and Humber (NIHR CLAHRC YH).

Partners
:
Gavin Church – stroke specialist physiotherapist, Sheffield Teaching Hospitals NHS Trust; Ali Ali – stroke consultant, Sheffield Teaching Hospitals NHS Trust.

Lab4Living team:
Remi Bec and Joseph Langley collaborating with Mark Fisher, course tutor,
BA (Hons) Product Design

Stroke is the 4th leading cause of death and the leading cause of adult disability in the UK, affecting 152,000 individuals annually and costing the UK health economy nearly £9 billion.
A quarter of these strokes are recurrent and often preventable if secondary vascular risk is optimised.

It is established that physical inactivity is an independent risk factor for primary and secondary stroke and that exercise limits secondary vascular risk by reducing blood pressure, cholesterol and weight. Yet less than half of adults over the age of 65 years in the UK achieve the recommended levels of activity, and this declines further after stroke and transient ischaemic attack.

This project aims at exploring ways of promoting exercise in stroke survivors living in Sheffield, using co-production workshops. Based on the experiences of Sheffield based service users, we aim to understand the current delivery of exercise after stroke, and the myths and enablers/barriers, and to explore ways in which the service could be improved using co-production methods.


Stakeholders involved

The multidisciplinary core team was composed of two health professionals (consultant and physiotherapist) and two designers who co-facilitated a series of five workshops.

Throughout the duration of the project, 71 people have been involved. At least 15 participants took part in each workshop, gathering together stroke survivors, health care professionals, exercise prescribers, social services, commissioners, medics and the voluntary sector.
A group of 10 final year product design students was involved in the final two workshops.

Methods used

This design-led project used co-creative methods throughout a series of divergent and convergent thinking based onto the double diamond (Design Council, 2005) approach.
Based on the experiences of the services accessed by these people in Sheffield, the team learned about current delivery of exercise after stroke, considered the myths and enablers/barriers, and explored ways in which the service might be improved using co-production methods with all participants.

Participants and students take part in workshop activities

Student engagement

Eight Product Design students on the final year module ‘Graduation Design Project Portfolio’ collaborated in the project, which contributed to their final year portfolio. The students self-select from a range of projects, based on their interests and skillsets.

Participants and students take part in a workshop

We always try to offer final years a live project experience and for the past few years have offered a range of briefs. The briefs range from a live project with a product design company, an enterprise project, through to the GRIP project which offers more of a service design opportunity.

Mark Fisher, BA Hons Product Design course tutor

In the second phase of the project, the students were paired with stroke survivors and healthcare professionals to develop their own brief. While briefs were developed independently for individual student assessment purposes, the briefs needed to be complementary and brought together as a single entity for development in phase three. Phase three is ongoing and focuses on securing funding to create one proof of concept to prototype and test in stroke wards.

Findings

Based on the insights gathered throughout the first three workshops, an ideal service was mapped out in a visual way. As part of this service, four touchpoints/briefs were developed by the students:

  • A staff training package to make sure the correct information is delivered by health practitioners at the right time and with the right language – Julian Lee;
  • A Stroke passport for patients that can be customised based on their preferences and goals and that could also be used as a log book – Joe Boniface and Daniel Lomas;
  • An animation video raising the benefits of undertaking exercise – John Williams and Emily Bough;
  • A multifaceted intervention (e.g. at the hospital, at home) – Dayna Booth, Ursula Ankeny and Tyra Spain.

Student Learning

I have learned more about the research process of design. The ways in which you can use the comments from the target market earlier on to shape the direction of the project.

Student participant

For the students, the project offered a rich, live learning experience that challenged them to use the design skills and approaches learned on their product design course and apply them to a complex service scenario.

Joe sharing concepts at workshop

What was particularly interesting was how the students responded to the challenge of developing a range of service touchpoints with strong consideration of complex user requirements instead of focusing on developing a tangible outcome.

Mark Fisher, BA Hons Product Design course tutor

The students worked alongside stroke survivors to co-develop creative ideas in a truly immersive experience. They benefited from the support of the research and healthcare professionals, particularly making use of the invitation to regularly attend the Royal Hallamshire Hospital acute stroke ward to get feedback on their service design concepts from a wider clinical team.


Dayna Booth sharing concepts at stroke ward

When asking questions or using activities to find out information you have to ensure that you facilitate in a way that allows them to respond in a bit more depth if possible e.g. sometimes they may need a few prompts

Final year student participant

From working with the stakeholders, students gained valuable insights including eliciting user experiences and understanding requirements, considering ethics, collaborating with clinicians and facilitating workshops.

Students were able to reflect on working with users, clinicians and reported that the project had broadened their thinking and opened up a whole new area of design.

It’s been the most interesting project across all three years of university as although we’ve have live projects before, this one feels the most ‘real world’ and worthwhile as it’s helping people who seem to appreciate what you are trying to do.

Final year student participant

Work is ongoing; phase three activity is focussed on final development and implementation of the staff training package and patient facing outcomes.


The funder’s report on this Translating Knowledge into Action project is now available from NIHR CLAHRC YH.

Participants and students take part in a workshop

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).

Better Out Patient Services for Older People (BOSOP)

This project sought to build understanding of the experiences of older people accessing services and to gain insight into some of the factors that led to non-attendance of appointments. The research aimed to improve the experience of older people with complex needs who use outpatient services at the Royal Hallamshire Hospital in Sheffield. The aim of greater respect for users’ dignity was particularly important.

Funded by: National Institute for Health Research (NIHR)
Partners: Mark Cobb, Clinical Director, Sheffield Teaching Hospitals
Project team: Dan Wolstenholme, Andy Dearden, Simon Bowen, Helena Soustar, Matt Dexter

Missed appointments are a significant issue for the UK National Health Service. Not only can this compromise treatment for individuals but it also carries a significant financial cost.

Better Out Patient Services for Older People (BOSOP) sought to build understanding of the experiences of older people accessing services and gain insight into some of the factors that led to non-attendance of appointments. The research aimed to improve the experience of older people with complex needs using outpatient services at the Royal Hallamshire Hospital in Sheffield. The aim of greater respect for users’ dignity was particularly important.

Better Out Patient Services for Older People (BOSOP)
Better Out Patient Services for Older People (BOSOP)

Researchers utilised a range of creative methods to elicit the experiences of older people and key stakeholders who participated in the study including emotion mapping, patient narratives and participatory theatre. These methods sat within the broader methodology of Evidence Based Design (EBD) as developed by the NHS Institute for Innovation and Improvement.

BOSOP enabled patients and staff to develop proposals to improve patient experiences including a new appointment letter.

Related papers and reports

Lifestyle Matters

Lifestyle Matters is a research based intervention which equips community living older people with the skills to re-design their day to day lives. 

Funded by Medical Research Council

Partnered with
University of Sheffield & University of Bangor

Team Lead: Claire Craig

Global ageing has been described as the greatest triumph and challenge of the twenty-first century (World Health Organisation). There is strong evidence to suggest that when older people are supported to engage in meaningful activity they experience increased quality of life and mental wellbeing.

Lifestyle Matters is an intervention aimed at helping older people to help each other to live life to the full. Comprising of group and individual sessions, community living people are enabled to explore the relationship between meaningful activity, health and wellbeing and redesign their lifestyle to embed health-promoting changes into everyday routines.

Research was undertaken in 2005 to build understanding of the experiences of older people, and the intervention was co-designed with older people (Craig and Mountain). Findings of an initial study based on this research showed that the approach empowered community living older people to examine their lives and to re-design the way that everyday activities were undertaken to accommodate some of the physical, emotional and cognitive challenges they faced as a consequence of ageing.

Meeting

Between 2011-2015 the intervention was the subject of a pragmatic, two arm parallel group individually randomised controlled trial (RCT) (Lifestyle Matters vs standard care). In addition to quantitative health outcomes, a purposeful sample of 13 participants aged between 66 and 88 years from the intervention arm of the RCT were interviewed.

“Lifestyle Matters for me was a pointer, a signpost to my future as a single older person giving me some answers to what I might do and what I could do and I would recommend it to anyone.”

(Lifestyle Matters intervention interviewee)

The interviews revealed that the majority of interviewed participants were reportedly active at 24 months, with daily routines and lifestyles not changing significantly over time. All participants described benefit from attending Lifestyle Matters, including an improved perspective on life, trying new hobbies and meeting new friends. A number of intervention participants spoke of adapting to their changing circumstances, and there were significant and lasting benefits for a number of the intervention participants interviewed. 

Cited as the intervention of choice

The intervention was cited in the National Institute of Clinical Health Excellence Guidelines (2008 and 2015) as the intervention of choice to promote mental well being in community living older people.

Commissioned in the UK, used world-wide

The programme is commissioned by mainstream services in the UK and is used all over the world

NESTORE

The aim of the research is to co-design a multi-dimensional, cross-disciplinary and personalised coaching system. Leveraging ICT social connectivity, NESTORE will support older people to sustain independence. The system will operate through tangible objects as well as software and apps.

Funded by Horizon2020.

Partners:
Politecnico di Milano (Polytechnic University of Milan), AGE – Age Platform Europe AISBL, Consiglio Nazionale delle Ricerche (Italian National Research Council), EURECAT – Fundacio Eurecat, FLEX – Flextronics Design S.R.L, FSIE – Fundacio Salut i Envelliment

Project Team:
Lead – Paul Chamberlain
Claire Craig, Nick Dulake, Kathi Chamberlain

The ageing population is growing fast in the EU. ICT can procide solutions for Active Ageing, however the success of novel ICT solutions depends on user perception about their efficacy to support toward health promotion and global wellness.  

NESTORE will develop an innovative, multi-dimensional, personalized coaching system to support healthy ageing by: 1) Generating and sustaining motivation to take care of health; 2) Suggesting healthy nutrition and personalized physical and mental coaching, as well as social interaction, to prevent decline and preserve wellbeing.

Lab4Living is part of the NESTORE consortium which comprises 16 partners from 8 European countries.

Through co-creation workshops with community living older people, the Lab4Living team are building understanding of the hopes and aspirations of participants to gain insights as to what individuals find meaningful, in order to inform the types of activities that NESTORE may offer to engage and motivate end users of the product. The workshops have explored what is meaningful in people’s lives and adopt the ‘exhibition-in-a-box’ co-design methodology developed and facilitated by the Lab4Living design research team. The methodology uses a collection of carefully chosen objects designed to stimulate and prompt conversation, and enable participants to share their experiences. 

“Using the ‘Exhibition in a Box’ methodology has enabled the participants to share in detail some of the factors affecting their perceptions and acceptance of technology, which informs how NESTORE might support older people’s engagement in health promoting activities.”

(Claire Craig, Lab4Living)

A key strength of the methodological approach followed in NESTORE is the engagement of end-users at all stages of the design process. Participatory methods permeate every aspect of the research in order to ensure that the end-product reflects the community’s needs and perceptions.

Working with Lab4Living researchers, the ‘expert-by-experience’ (‘EBE’) group, a group made up of ten older people whose ages ranged from 54-93, have analysed the workshop findings and are recording and sharing their experiences of technology in their every day lives. 

The shared findings will inform the content of the technological development of the system through an iterative process and ongoing dialogue with the ‘EBE’ group.

The research is building understanding of user requirements of the technology and the factors that promote and inhibit use, and will explore other potential contexts where the technology may be used.

The Starworks Network

The Starworks Network is a young people’s prosthetics research collaboration. It has taken a co-design approach to bringing children and families together with experts from healthcare, academia and industry, to creatively explore and address the unmet needs in this area.

Funded by The UK Department of Health / National Institute for Health Research (NIHR)

Project led by NIHR Devices for Dignity MedTech Co-operative, Sheffield Teaching Hospitals.

The Lab4Living team was led by Joe Langley and Gemma Wheeler.

There are an estimated 2000 children in the UK living with a form of limb loss and many will use upper and/or lower limb prosthetics from an early age. However, product and service provision for these children is usually based on scaled-down versions of adult prosthetics, which often do not meet their unique functional, social and emotional needs.

In 2016, the Department of Health released £750,000 to build a network of clinicians, academics, industry experts, and crucially, children and families, to support research in this area. It aimed to ensure a balance between ‘clinical pull’ and ‘technical push’ in translating much-needed innovation in child prosthetics into everyday use. 

Our regular collaborators, Devices for Dignity (Sheffield Teaching Hospitals) invited Lab4Living to bring a co-design approach to the building and maintenance of this network. We have played a key role in the design, facilitation and reporting of each stage of the project, ensuring that children’s voices were central throughout. 

“The Child Prosthetics Research Collaboration led to inventions and optimizations that reflected what children and families need. The experts and academics who develop prosthetics would probably never have heard from families and children how a poor-fitting or unattractive limb can limit a child at home, in the classroom and in the playground.”

(Gary Hickey, INVOLVE)

Needs assessment
We engaged children and families across the country through workshops, phone calls and postal activity packs tailored to a range of ages.

Sandpit events
A series of four one-day workshops in Salford, Bristol, London and Sheffield, brought the key stakeholders together to creatively and collaboratively explore key challenge areas emerging from the initial needs assessment. We designed a set of bespoke tools to support activities in problem definition, inspiration, ideation, prioritisation, development, pitching and network-building. 

Proof of Concept projects
From this, The Starworks Network has funded 10 proof of concept projects looking to address issues of comfort, fit, customisation and training.

We have continued to provide design support to these projects and the Network as a whole, and are pleased to announce that it has been awarded follow-on funding from the NIHR to continue supporting research and innovation in this important area. Starworks 2 has begun and will further engage with all stakeholders to bring new innovations and technologies to children with limb difficulties.

“This, to my knowledge […] is the first of its type in scale and content and hopefully will produce some exciting, useful and relevant developments […] for our paediatric clients, who have sadly, by nature of their relatively small numbers and even smaller voices, been largely ignored by industry and the profession. Empowering the client group that you are trying to help and allowing them a voice in what is being developed for them is surely the best way forward.”

Rose Morris, Clinician, in ‘Attracting innovation in child prosthetics’, The Clinical Services Journal, February 2018, p56-58.
Funding announced

Devices for Dignity MedTech Co-Operative has announced the funding of 10 Proof of Concept projects, addressing a variety of needs for children using prosthetics.

Raising Awareness

Starworks has raised awareness of co-production methods through coverage in a Nature special issue on Co-production of research, published on 3rd October 2018 and in an upcoming guidance document by Involve (www.invo.org.uk).

Raising Awareness

A recent article in a clinical journal raises awareness and demonstrates recognition of the potential of the Starworks research collaboration. Raj Purewal, business development and partnerships director at NHS innovation specialist, Trustech, discusses how the project aims to increase progress in innovation in child prosthetics even further in an article for The Clinical Services Journal, February 2018, p56-58.

Supporting Collaborations

The Starworks project has supported the formation of collaborations between researchers across the country through Industry Forum events.

Resources

Related research on Sheffield Hallam University’s Research Archive

Future Bathroom

This project aimed to improve the quality and design of bathroom furniture for older people with the goal of producing products which all bathroom users find acceptable as well as meeting the specific needs of older and disabled people.

Funded by: Engineering and Physical Sciences Research Council (EPSRC), Ideal Standard

Partners: British Council, Vitra and Istanbul Technical University

Project team: Paul Chamberlain, Heath Reed, Maria Burton and Andy Stanton

The need for user engagement in the design process is particularly acute when the target user group has specific requirements which may not be fully appreciated by designers. The focus of this research, designing to support older disabled living is one such problem. The specific domain of interest, that of the bathroom, provides a number of challenges to user-centred design methodology because of the highly personal, sensitive and intimate nature of the activities that take place there.

“I don’t wash my hair in the shower because when I close my eyes I feel unsafe. I wash it in the sink after my shower.”

Female, 70.

“I never thought I would have trouble getting out of the bath but I do.”

Male, 75.

“Things have changed since we moved here – as you get older, things change a lot.”

Female, 63, with arthritis.

The aim of this project was firstly, to develop a robust methodology for fostering co-design dialogue between designers, researchers and people (aged 50+) with chronic age related health conditions which lead to disability and frailty. Examples include arthritis, osteoporosis, stroke and macular degeneration.

Secondly, it aimed to develop a range of innovative and desirable bathroom concepts that are sensitive to the problems of living with disability, which do not stigmatize, are capable of manufacture and will demonstrate the principles we have developed.

The three-year project, funded by the UK Engineering and Physical Sciences Research Council, involved end users, predominantly older users, and Ideal Standard, one of the largest global manufacturers of bathroom products.

Creative approaches were adopted to prompt discussion on bathroom behaviour, often considered taboo, such as the recruitment of older ‘community lay researchers’ who visited older people in the community and the implementation of public field labs.

In addition, quantitative data was collected (via motion capture, high speed cameras and thin film force sensors) through observational studies undertaken in a simulated bathroom environment.

The research evolved to explore further the cultural behaviour of bathroom use through a further project ‘loo-lab’ which was funded by the British Council in collaboration with Istanbul Technical University, industry partner Vitra and older people living in Turkey. The project featured in the Foundation for Assistive Technology, Annual Parliamentary Report UK.

A bathroom design guide for users, ‘If only I knew then what I know now’ (endorsed by Age UK) was published from the findings.

The Lab4Living researchers on this project were Heath Reed, Maria Burton and Andy Stanton.

“If you are interested in designing your bathroom to better suit your needs as you grow older, then this will be a useful guide. We always welcome advice based on sound evidence produced by expert researchers, as we have in this leaflet.“

– Professor James Goodwin, Head of Research, Age UK, 2011.

Project Impacts

Included in NIHR Dissemination Centre Review

Future Bathroom is included in the recent NIHR Dissemination Centre Themed Review ‘Help at Home‘ (December 2018, doi: 10.3310/themedreview-03345)

Most Innovative Design

Outcomes of the project were awarded ‘Most Innovative Design’ in 2017 by the Over 50s Housing Association, UK.

Included in parliamentary reports

The Foundation for Assistive Technology (FAST) produce an annual parliamentary report about R&D in Assistive Technology (AT). Included in the 2009-10 report and 2011-12 report.

Work Exhibited

This work was included in the 2009 EPSRC Pioneers exhibition at Olympia, where it was praised for its innovative research methodology and its focus on the training of older people as community researchers. The Foundation for Assistive Technology (FAST) produce an annual parliamentary report about R&D in Assistive Technology (AT). Included in the 2009-10 report and 2011-12 report.

Toilet Talk

This project used creative methods to engage children with continence issues, alongside their parents and/or siblings, in discussing the challenges they face in daily living and in ideating potential solutions. 

Project funded through Engineering and Physical Sciences Research Council (EPSRC). Both groups are National Institute for Health Research Healthcare Technology Co-operatives (NIHR-HTC).

Partners:
Devices for Dignity (Royal Hallamshire Hospital, Sheffield); 
IMPRESS (Incontinence Management & PRevention through Engineering and ScienceS)

Project Team:
Project lead – Dr Joe Langley

Researchers:
Dr Gemma Wheeler (Lab4Living); Nathaniel Mills (Devices for Dignity); Sarah King and Dr Peter Culmer (IMPRESS, Leeds); Chris Redford (Freelance Illustrator).  

Approximately 900 000 children and young adults are affected by incontinence in the UK (BBC 2015), whether as a result of medical problems or issues with toilet training. Although children represent a smaller percentage of the population with continence issues, the impact upon them should not be underestimated. The effect on a child’s wellbeing at school (risk of bullying, potential lack of confidence in participating in social or sporting activities) may have lasting implications for the rest of their lives. Despite this, the effects of incontinence are not well understood and require further research.

To respond to this challenge, a partnership between Devices for Dignity and IMPRESS (Incontinence Management & PRevention through Engineering and ScienceS; funded through the EPSRC) was formed. Lab4Living researchers Joe Langley and Gemma Wheeler were invited to join the team to help design and facilitate a bespoke Family Day event, using creative methods to learn about the lived experiences and unmet needs of children living with incontinence, and their families. The aim of this workshop was to inform future innovation of relevant medical technologies in this area, to better support these families in their day to day lives.

The stakeholders were children with continence issues, their parents and siblings, healthcare professionals, engineers and researchers looking into incontinence and its effects.

Impact

A conference paper, Child-led, Creative Exploration of Paediatric Incontinence, has explored the methods and impact of this project.

A range of bespoke tools was developed in collaboration with an illustrator to creatively and collaboratively explore the challenges faced by children with incontinence issues. These tools aimed to place the young people as the experts in the rooms, reflecting on their wider life (i.e. their hobbies, friends, family) and took an asset-based approach to highlight the skills and resources they already leverage to address their personal challenges. Later, ideation activities were used to empower the families as inventors to highlight and address any unmet health needs.

“What can I say, but ‘what a team!’ I was really overwhelmed by the response from the families – the kids were fantastic and the parents engaged and obviously committed to supporting this in the long term.”

(Dr Peter Culmer, project partner at IMPRESS)

During the workshop, the illustrator visualised emerging findings on a live mural in order to demonstrate progress made through the session and to highlight the value placed on the participants’ input. Central to each of the activities was the aim to reframe a traditionally ‘taboo’ topic as something that is safe, and even fun, to explore through creative means.

A range of ‘blue sky’ ideas generated at the workshop, in response to the challenges identified, was incorporated into a comic (available at: https://tinyurl.com/ToiletTalkComic). Based on this input, two further workshops have been organised by the project partners (including Lab4Living) with children and families to develop a smart watch app to help children develop regular toileting behaviours. Early feedback has been extremely positive; we are currently seeking an industry partner to take this forward.

Impact

The IMPRESS network has shared findings from the workshop, including the comic on its website: The http://impress-network.com/wp-content/uploads/2017/11/KidsToiletTalk_COMIC.pdf http://impress-network.com/wp-content/uploads/2017/12/KTTreport4web.pdf

This first phase of funding drew to a close at the end of 2018 but the work of IMPRESS continues via the Surgical Medtech Cooperative under their Colorectal Theme.

The Life Café

The Design to Care Programme seeks to rethink how palliative and end of life care can be provided equitably, efficiently and sustainably for future generations. The Life Café Kit is a result of the programme, and is designed to promote and support conversations about what individuals find meaningful in life and in care.

Funded by Marie Curie
Partnered with University of Cambridge

Team: Helen Fisher, Claire Craig, Paul Chamberlain

Drawing on long-established ethical principles, the UK General Medical Council articulates good end of life care as that which ‘helps patients with life-limiting conditions to live as well as possible until they die and to die with dignity’ (GMC 2009 p.3).

The last decade has witnessed a demographic change on unprecedented scale.

People are living longer and with more complex, long term conditions such as cancer and dementia. Our palliative and end of life care services will be required to meet the needs of our ageing population under increasing pressure.

The Life Café is one of the outputs of the Design to Care programme which seeks to rethink how palliative and end of life care can be provided equitably, efficiently and sustainably for future generations.

The community engagement aspect of the Design to Care programme focuses on understanding what is important to different individuals in life, in care, and towards end of life. A methodology has been developed by researchers at Sheffield Hallam University’s Lab4Living, to enable research to be gathered in an informal, comfortable manner within existing community groups and familiar environments. This has been named the Life Café.

“This has made an incredible difference to me today to share these things and listen to you all.”

Life Café Participant

“Good care is ‘talking, listening, communicating, trusting, consistency, choice and time.”

Life Café Participant 

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, to scaffold thinking and to prompt conversation. The Life Café is comprised of a variety of critical artefacts, activities and resources, co-developed with community members, that have been used to gather stories, experiences and ideas to support the design phase of the project. 

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. Participants have shaped the contents of the Life Cafe and enabled others to talk about sensitive topics more easily, without really realizing. This iterative co-design process has occurred through every element, activity and resource included in the Life Café Kit, even the graphic design and the packaging design.

11 Life Cafés facilitated 141 participants 

In the first phase of the Design to Care Programme, 11 Life Cafés have been facilitated with a total of 141 participants (from groups including chaplains, faith groups, coffee morning socials and mixed community groups), using convenience sampling. 

The Life Café Kit

Life Cafés were continued to develop a kit for independent facilitation. The life café has since been independently facilitated within 2 community groups, a care home and a hospice. The feedback from this will be consolidated and incorporated into the final version of the Kit. We have increasing interest in the Life Café Kit, not only for community groups but for use in schools, carer groups, staff training etc. to open the conversation up and bring awareness to organisations.

The Life Café as a method of eliciting the experiences of individuals in the context of meaning and care has been very successful. Particularly notable was its ability to enable community groups through this process to identify strength and mobilise knowledge and action. This sits well in the context of building compassionate communities.

The Life Café has elicited insights into how individuals conceptualise and describe good care, and a recognition of the pressure points in relation to delivery. The research offers glimpses of what better care might and could look like in the future. Future research will continue to utilise this method with other groups (health and social care staff, trusts and CCGs, carer groups, community groups etc.) to continue to build understanding in order to inform the redesign of end of life care provision.

Resources

Related research on Sheffield Hallam University’s Research Archive