This enquiry examines the role of design and creative practice in giving voice to older people facing extreme poverty in Sheffield.
Funded by: Research England
Project lead: Claire Craig, Sarah Smith (Smizz), Helen Fisher
Despite the long-term trends of improvement in life expectancy, infant mortality and rates of premature deaths from cancer and cardiovascular disease in England as a whole, stark inequalities in health remain (Public Health England, 2019).
According to research undertaken by the Kings Fund ‘long term conditions are 60% higher in people experiencing poverty (DH, 2012). Studies have suggested that the severity of the disease is 30% greater for this population and that multi-morbidity is more prevalent particularly in relation to individuals living with mental health problems. For premature cardiovascular disease mortality considerable inequality by deprivation exists with mortality rates in the most deprived tenth of areas of the UK almost 3.5 times higher than those in the least deprived tenth of areas.
Design has an important role to play in challenging and addressing these inequalities. In 1972 Papanek and Fuller argued that design is imperative to satisfy unmet or underserved needs of marginalised people living in resource limited societies. More recently there has been a diversification of how and where designers are working with greater emphasis on civic responsibility and the value of social design.
Researchers in Lab4Living engage in a wide-ranging programme of work addressing health inequalities. This current study utilizes a design-led approach to make visible some of the challenges older people living in poverty in Sheffield face. This two year project was undertaken in partnership with REACH as part of the national AgeBetter programme. Inspired by the Life Café (a curated set of materials to enable individuals to have challenging conversations about sensitive topics of end of life), the project lead commissioned the development of a toolkit to support conversations about finances. This was found to be successful and has now been adopted by Age Better in a national roll out of the work.The research culminated in an interactive exhibition where participants were able to share their experiences of social isolation, loneliness and financial hardship. The work has contributed to broader debates regarding he need to create services that are more in-tune with the complex and multiple barriers people living in poverty face.
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.
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
A space where people with dementia, family members and supporters can come together and explore ways of living well with dementia.
Project lead: Claire Craig, Helen Fisher
Funded by: Research England
Partners: Scottish Dementia Working Group / Alzheimer Scotland / DEEP Network
Traditionally patient information for people living with dementia is written separately from that aimed at their family members and carers. This research enquiry challenges this genre and through a participatory design research process has developed a resource to enable people with dementia and their family members to make sense of the condition and develop supportive strategies together.
This resource has transformed how we relate to each other. We have completely re-designed our routine, the environment and this has made all the difference in adapting to and managing the challenge that dementia brings.
Partners: Alzheimer Scotland, Royal College of Occupational Therapists, Scottish Dementia Working Group
The web-platform was created in response to the COVID-19 pandemic in 2020, which saw many individuals confined to home and unable to access vital services. The website was highly successful in providing a platform through which individuals and their families could access the Journeying through Dementia research and it was found to be a positive way to engage with a wide-number of individuals. Within two months of its launch the materials had been viewed over 30,000 times, and formed the basis of interventions used by the Alzheimer Scotland link workers. The research team was invited to offer a webinar to over 150 Allied Health Professionals about the work and it was cited in the Guardian as an example of best practice in relation to University responses to the COVID-19 pandemic.
‘An inspired uplifting place to visit, brimming with a wealth of ideas and information.’ … ‘The site can be used as a tool to improve the knowledge of people who are new to working with dementia as it gives a lot of information and a sense of positivity to cascade to others.’
Kathryn Rawling – Sheffcare
Our clinical support worker has been using the website to focus welfare phone calls for people living alone at home with dementia. They’ve gained quite a rapport from using the topics as themes for their conversations – great work!
Allied Health Professional
The Scottish Dementia Working Group undertook an evaluation of the materials and feedback was overwhelmingly positive.
The work had formed the starting point of a broader enquiry, which seeks to build understanding of the design qualities and features that can help people with dementia to meaningfully engage with this technology. The next phase of the work will be to test a series of principles and practices that have been developed in the delivery of a group-work intervention on-line.
I am amazed at what you have achieved in such a small amount of time.
Allied Health Professional
Carers don’t have the energy to search for things online so having this all in one place is great… People feel like they’ve won the lottery when they see the website!
Allied Health Professional
10,000 Visits and 60,000 Page Views
In the first year of the website being live (March 2020 – March 2021) it had over 10,000 visits and almost 60,000 page views.
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.
This project takes a user-centred approach through needs assessment, co-design, interviews, case studies and usability testing to design and develop a product range to help children with arthritis lead more active and independent lives.
Funded by Sheffield Hallam University, Lab4Living, NIHR CYP-MedTech and Sheffield Children’s Hospital
SHU supervisors: Dr Joe Langley and Nick Dulake External supervisors: Nathaniel Mills (NIHR CYP-MedTech) and Dan Hawley (Sheffield Children’s Hospital NHS Foundation Trust)
The problem Juvenile Idiopathic Arthritis (JIA) is one of the most common causes of physical disability in childhood (National Rheumatoid Arthritis Society, 2018) with between 1,000 and 1,500 children developing it each year in the UK (Silman & Hocheberg, 2002). Despite the commonality of the issue, arthritis in children is often trivialised with many products targeted towards older users highlighting an ignored cohort and the potential for new products.
The approach This research uses co-design, interviews, surveys through support groups, case studies, sketching, form modelling and prototyping to explore technologies and products to support children with arthritis and their families to enable them to live more active and independent lives. Participatory research methods involving children, families and clinicians has led to a range of prototypes being developed.
Paediatric conditions were focused on as children have an entirely different outlook on the world from adults (Cherry, 2018). For younger children, they often have an innate confidence in themselves, unconcerned about how things they do are perceived whilst their creativity is boundless as their imaginations aren’t curbed by rules of logic (Frost, 2016). As a result, this makes them an ideal target market due to their adaptability. For older children, whilst they are more concerned with their appearance and how their actions are perceived, their key driver is increasing their independence and exploring their world, which diseases like arthritis can limit. By encouraging certain behaviours such as self-management of a condition from a young age, it gets them adapted and into the routine. In adulthood then, these early experiences will give them confidence in managing their condition allowing them to live independent lives and reduce potential ‘crisis’ scenarios.
JIA was chosen as the condition as it is not an uncommon problem yet it is treated as such, with many children feeling stigmatised and isolated. The fact that it is a ‘hidden disease’ can lead to much disbelief with an often long wait to diagnosis- “I was in a lot of pain and started to get bullied as I was different” according to one child participant. With the formation of a new charity called Versus Arthritis in September 2018 following the merger of Arthritis Care and Arthritis Research UK, there was a refreshed campaign for recognition as the condition “steals from millions of people every day” (Versus Arthritis, 2018), the currency of the issue and the extent of the ignored cohort was emphasised, leading to the decision to focus on this area.
Users were at the heart of this project with initial research looking into the needs of the different stakeholders involved: the child, the parent/ carer, the healthcare professional and the teacher. Through this, it became clear how varied the key priorities were within the group:
The child wanted “something to help with pain so that [they wouldn’t] have to stop doing fun things”.
The parent/ carer, in addition to aids to distract from pain, also wanted something to help keep better track of the condition.
The healthcare professional wanted something to help motivate physiotherapy.
The teacher needed something to help with disbelief in the classroom.
Initial thoughts about briefs had centred on improving assessment, helping with everyday activities and reducing stigma. The priorities put forward by the stakeholders slightly altered the direction, driving the decision to develop four interventions simultaneously, with each targeting a key need put forward by each group:
Helping with pain management
A way to keep track more easily
Help with communication in the classroom
Through the duration of the six month timeframe, each brief was developed by Ursula to prototype level. Workshops with children who have arthritis and their families were held at the research, initial design, further development and final prototype stage in order to ensure the products were fulfilling a need as well as to tease out issues and potential improvements. Technical requirements were tested and tweaked to ensure both ease of use and safety whilst the forms were explored through physical models and sketching, taking into account both ergonomic factors of gripping difficulty and aesthetic drivers of wanting something discreet but that also validated their condition.
Outcomes Four prototypes were developed as part of the final year project:
Heat- FIX: A wearable device that helps to distract the brain from the joint pain during a flare. It can be wrapped around any joint and fastened securely in place.
“The warmth of it is really soothing- I love the degree of control.”
(child participant with arthritis)
Active- FLEX: A motivational physio tool that has an additional link to a character on the app helping to gamify and incentivise an otherwise “boring” chore. The colours are bright and energising with the gripping texture ensuring ease of use.
“I hate nagging her to do her stretches- this way she’d want to do them.”
(parent workshop participant)
Class- COMM: A wearable to help facilitate communication between the pupil and teacher when the child is in pain/ needs help. With a form similar to a Fitbit, the wearable is discreet, helping to reduce feelings of embarassment.
“Teachers have forced her to do PE as they weren’t aware – this would help with disbelief.”
JA- CONNECT: An app with different versions for parents and children to both help keep better track of the condition as well as to create a network so that parents and children don’t feel so isolated in their experience.
“The first thing that clinicians ask when I mention a symptom is ‘do you have a photo?’. This would really help in tracking changes.”
“Being able to pass tips onto other kids would be so great.”
“The University, though the Lab4Living research group, already have a strong relationship with both Sheffield Children’s Hospital and NIHR CYP-MedTech, collaborating on a range of projects with both. This enabled Ursula to benefit from research input to her undergraduate work at organisational, operational and technical levels of her project. Subsequently, following graduation, Lab4Living has provided a ready route to enable Ursula to continue her project through to implementation.
(Dr Joe Langley, Lab4Living)
The future This project has been awarded funding from NIHR CYP MedTech through Sheffield Children’s Hospital, to further develop the product outcomes, which started in October 2019. The development will focus on improving the technology whilst also looking at the connectivity aspect of the products with the app platform. The first goal is to carry out a pilot study, the results of which can then drive further improvements, with the hope being that these products will ultimately go to market.
An evidence-based group programme created by occupational therapists and people with dementia for individuals at an early stage of their dementia journey.
Partners: Alzheimer Scotland
Team: Claire Craig & Helen Fisher
Journeying through Dementia is an occupation-based intervention that aims to support people at an early stage of their dementia journey to engage in meaningful activities and maintain community connectedness.
The programme was developed in partnership with people with dementia who spoke of the value they attached to continued participation in everyday occupations and in new learning. Throughout all the co-creation activities, people with dementia were clear that wanted to have the opportunity to access groups that did not just talk about the diagnosis but that offered practical advice and support of how to continue to live well with the condition.
This intervention directly supports delivery of ambition 1 of Connecting People, Connecting Support (Alzheimer Scotland 2017) of enhanced access to enable people to be supported to look after their own health and wellbeing.
Emphasis throughout is placed on ‘doing’ rather than simply talking about strategies and challenges. Individuals are given the opportunity to put ideas into practice either within the group or through organized out of venue activities. This helps to build confidence and also encourages active problem solving. The community is seen as a place where skills are enacted and the place where individuals can access a wide range of resources to support roles, maintain and develop relationships and to experience enjoyable leisure activities, which support well-being.
Pilots have been carried out in Scotland with Alzheimer Scotland, Fife Health & Social Care Partnership and NHS Grampian, and the South Carmarthenshire Older Adult Mental Health Team, based in Prince Philip Hospital, Llanelli, Wales. The following video features our Llanelli Journeying Through Dementia Group.
Journeying through Dementia was inspired by a growing number of people living with dementia who were meeting together in their communities to offer each other support. This approach was best exemplified by the work of the Scottish Dementia Working group.
Gail Mountain and Claire Craig (2004) had successfully undertaken research to develop and facilitate an occupation based group aimed at community living older people called Lifestyle Matters which had enabled individuals to connect with valued occupations in later life and to adapt and enact meaningful occupations in the community and this raised the question whether a similar model (peer sharing, group work and didactic teaching) could be used with people with dementia.
Claire Craig then worked nationally with people living with the condition to build understanding of what people with a recent diagnosis of dementia identified as being helpful or resources and support they felt would have increased their quality of life. The results are reported in a paper: What should be in a self-management programme for people with early dementia? (Ageing and Mental Health, 2012)
This research then formed the basis from which Claire Craig developed the initial Journeying through Dementia Intervention. For the next ten years small pieces of funding supported the refinement of the programme and a total of six groups were facilitated, each time people with dementia gave feedback and helped Claire and Helen shape the final iteration of the programme and kit of resources that you see before you now.
With special thanks to Design Futures Packaging for bringing the resources to life.
When I go home from here, I feel better and do more. The more you do, the more you can do.
Journeying through Dementia participant
I feel we’re helping one another, being on the same wavelength. I have new friends I don’t think I will ever forget.
Developing a new Parkinson’s service delivering home-based care. Using new technology the service will help Parkinson’s patients, carers and healthcare staff monitor a person’s condition remotely – ensuring care remains person-centred. This enables them to ask for contact and review at times they need it, removing the need for time-locked clinic reviews that fail to meet the needs of patients and carers, and contributes to staff stress.
Funded by : The Health Foundation Parkinson’s UK
Project team: Joe Langley Rebecca Partridge Ursula Ankeny
This project follows on from the previous project with Parkinson’s services in the South West Peninsula. These workshops uncovered issues in the way the service is currently run, with time-locked clinics, cancelled and delayed specialist appointments, vacant staff posts and arduous journeys to clinics for patient and carer.
Lack of clinic capacity results in limited ability to see those who require urgent review. Even when clinic review is timely and appropriate, the evaluation only captures how the patient is within those few minutes, and is otherwise dependent on patient recall, which can lead to erroneous assessment and inappropriate interventions. This sub-optimal provision of care contributes to staff dissatisfaction, stress and poor retention, which is a cause of significant threat to PD service resilience nationally, with 50% of PDNS vacant posts being due to long-term sick leave or resignation.
This project seeks to develop a new service that monitors symptoms on a monthly basis. It will use a Parkinson’s Kinetigraph (PKG®) a wrist worn, watch style device to monitor motor symptoms and a series of questionnaires for non-motor symptoms. Through this system patients will only need to attend a clinic when required and instead will be supported to self-manage minor changes and fluctuations supported remotely.
Through a series of workshops and prototypes, our role within the project has been to help the team develop the new service pathway, understand users’ needs and then co-design a series of training, support and learning resources with staff and patients. These will provide support information on the new pathway and signpost to self-management resources.
The project has now recruited 120 patients onto the pathway and has been well received by those who are using it.
Further resources were provided in the form of short films to describe the Home Based Care Pathway resources to patients and their families.
Film 1 describes the how the Home Based Care Pathway works :
Film 2 describes the different components in the resource pack and how to use them:
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.