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Compassionate Communities – Network Mapping

Compassionate Communities – Network Mapping

The development of resources for network enhancement activities, part of the mechanism to establishing Compassionate Communities when it comes to end of life care.

Project lead: Claire Craig, Helen Fisher

Funded by: Marie Curie

Partners: Compassionate Communities UK

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. The Network Mapping Kit was funded by Marie Curie as an extension to the Life Cafe and is used by Community Connectors to establish and build supportive networks within communities.

For more information about Compassionate Communities please visit the CCUK website.

Me & You

This enquiry explores the role of design in supporting meaningful conversations for older people living in care homes. 

Project team: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Sheffcare

The Department of Health defines a care home as an establishment that, ‘provides accommodation, together with nursing or personal care for [individuals who] are or have been ill, persons who have or who have had a mental disorder, persons who are disabled or infirm’ (Department of Health, 2000, p.3).
 
Older people living in care homes have some of the most complex needs of society (Office of Fair Trading, 2005). Levels of dependency are high. In one national survey undertaken by BUPA and the Centre for the Policy of Ageing (Lievesley, Crosby and Bowman, 2011) 90% of care home residents were identified as having high support needs.

This enquiry explored the role of design in supporting meaningful conversations for older people living in care homes. The outbreak of COVID-19 meant that care homes became closed communities. As a consequence, residents who were frail or facing end of life were unable to tell family members how they felt and to say goodbye. This enforced separation also made it difficult for family members.  

An earlier enquiry, funded by Marie Curie, identified topics that individuals at end of life identified as being meaningful and questions people wished they had asked their relative whilst they were still alive. These topics and questions were translated into the research-informed product: You & Me.  

Current research is evaluating the potential of Me &You to support relationships between older people living in care homes and their family members, offering individuals the opportunity to express what is important. 

This little resource prompts you to record all the things you want to say to your loved one but somehow just never have time to put into words. 

Me & You Participant

Connecting People, Connecting Support Online

Connecting People, Connecting Support is an online space where people with dementia, family members and care staff can access post-diagnostic materials informed by our research programme Journeying through Dementia.  

Project team: Claire Craig, Helen Fisher

Funded by: Research England

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 web-site 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 down loaded over 30,000 times, 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 (see link) and it was cited in the Guardian as an example of best practice in relation to University responses to the COVID-19 pandemic. 

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

Click here for Connecting People Connecting Support Online related news items.

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

Juvenile Idiopathic Arthritis (JIA) Toolbox to encourage self-management

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

Partners: Sheffield Hallam University, Lab4Living, NIHR CYP-MedTech and Sheffield Children’s Hospital

Project lead: Ursula Ankeny

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)

Initial ideas brainstorm

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.

Workshop engaging children with arthritis and their families

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.

Developing ideas in response to the user’s comments

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
  • Encouraging physiotherapy
  • Help with communication in the classroom
Testing appropriate sizes and shapes using rough prototypes

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.”

(parent participant)
  • 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.”

(parent participant)
Prototyping and testing potential approaches

“Being able to pass tips onto other kids would be so great.”

(child participant with arthritis)
Ursula Ankeny with the Colour In Design Awards (CIDA) Judges ‘One to watch’ prize at New Designers in 2019

Impact

“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.

Journeying Through Dementia

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 organizedout of venue activities. This helps to build confidenceand 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.

Background

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.

Journeying through Dementia participant

Plymouth Home Based Care Pathway

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.

The PKG® device. Image courtesy of Global Kinetics Corporation Limited

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.

Generating and prototyping ideas for resource pack

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 is due to recruit the first 30 patients to the pathway in September with a further 120 recruited later in the year.

Home care pathway Launch event

Impact
More information can be found here:

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

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).