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Trails – Enabling Ongoingness

Trails – Enabling Ongoingness

A design artefact that explores concepts of ongoingness in the context of dementia. The piece explores the relationship between a granddaughter and her grandparents through capturing and curating digital media now for the future, offering ways for her to feel a sense of her grandparents in particular places.  

Project lead: Helen Fisher

Funded by: Research England

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

Trails is a tiny audio artefact that invites the listener to discover stories captured and curated by loved ones with dementia when visiting places that are meaningful for the person and their family. The artefact is one design response generated as part of the EPSRC project, Enabling Ongoingness which explores the role of design in creating meaningful connections with people who have passed away or who are at end of life.

For more information please visit the Enabling Ongoingness Website.

Initiate.Collaborate

A new project can feel like stepping into the unknown—new people, new perspectives, and not everyone on the same page. Initiate.Collaborate is a card game that is fun and enables responsive and responsible collaborations.

Project team: Claire Craig, Helen Fisher

Funded by: Royal Society, New Zealand

Partners: Auckland University of Technology (AUT), New Zealand

The academic disciplines and practices of design and health currently operate within different spaces and draw on disparate paradigms relating to how knowledge is created and disseminated. Whilst the value of bringing design and health together is increasingly being recognised the reality is that this can be fraught with complexity.

This research sought to develop methods and materials to facilitate inter-disciplinary collaborations. The final output of the research is a game named Initiate.Collaborate which enables research teams comprising of design and health researchers to explore underlying value systems and assumptions that potentially impact on how they might work together.

www.initiate-collaborate.com

Patient Experience Toolkit

Patient experience is a highly contested concept. However there is emerging evidence and near universal agreement that Patient Experience (PE) feedback is necessary in order to deliver high quality care. In the UK, there is a mandatory requirement to capture patient experience data. This project aimed to explore staff attitudes towards and understanding of patient experience data, and what (if anything) they did with it.

Funded by NIHR HS&DR

Partners:
Bradford Institute of Health Research
NIHR CLAHRC YH

Project Team:
Design Lead – Joe Langley
Rebecca Partridge, Ian Gwilt, Rebecca Lawton, Laura Sheard, Claire Marsh

An initial scoping review was conducted in stage 1 to understand what Patient Experience (PE) measures are currently collected, collated, and used to inform service improvement and care delivery.

Stage 2 was a phase of action research and co-design iteratively combined. This was followed by an evaluation and a refinement of the intervention developed in stage 2 for scale up to the wider NHS context.

Our specific contribution focused on the co-design in stage 2.

A patient experience improvement toolkit was developed through three workshops using participative co-design methods.  Representatives from six wards from three NHS Trusts and a group of six patient/public representatives volunteered to take part in the three workshops. Members of the research team (who did the initial scoping research) also participated in the co-design.

The initial prototype was piloted for a 12 month period through an embedded action researcher process. The action researchers then engaged in a subsequent design consultancy process to refine and modify the toolkit.

A toolkit was developed to support frontline staff to access, collect, analyse, interpret and use patient experience data to identify ward level changes prototypes and sustain them.

It was identified that the data interpretation skills did not typically exist in the ward and so the toolkit was modified to accommodate a data skilled person as a toolkit facilitator. This individual took on many of the characteristics of the action researchers – primarily because the action researchers took up this role in order to keep the project moving forwards.

What was interesting from a co-design and design research perspective was the presence of the action researchers in the extended prototype testing phase and the mediating role that the action researchers took on after this, acting as an intermediary and gatekeeper between the design team and the frontline staff who had tested the toolkit.

This raised interesting questions for us about how to access the right knowledge (from the frontline staff) ‘remotely’ and how to design ‘around’ the action researchers – in our minds was a constant query about the influence the action researchers played in the process and became part of the intervention itself.

Higher order reflections about design researchers working with health sciences researchers and the integration of methods from design research and health sciences were also raised.

The toolkit has since been further refined into the Yorkshire Patient Experience Toolkit (YPET). A coaches network has been established to support ward staff to use the toolkit, and is available as a free resource.

Occupation Based Social Transformation

The term ‘social transformation through occupation’ is used broadly to refer to various approaches that focus on using occupation as a means to restructure practices, systems and structures, so as to ameliorate occupational and social inequities. 

Project team: Claire Craig / Nicholas Pollard

Funded by: European Network of Occupational Therapists in Higher Education

The social transformation through occupation think-tank has brought together a global multi-sectorial group, which includes professionals, service users, researchers, politicians, members of the public, students and teachers. The enquiry explores how communities draw on collective creativity to come together and build assets to support quality of life.  

Members of the think-tank and its associated network which spans over 30 countries, have been gathering information and creating pathways towards actions to tackle health inequalities through an occupation based perspective. The research team focuses on ways to bring together diverse theoretical perspectives and practices to move social transformation through occupation forward. 

Early research has been manifested in an e-book of Case Studies for Social Transformation through Occupation. The e-book shares exemplar case studies generated throughout the research, providing ideas for how such case studies can be used in education and practice.

Analysis of these case studies identified that participants were drawing upon key principles and practices associated with broader models of social transformations, particularly those associated with participatory, emancipatory and community development approaches. Aligned with these types of approaches, participants emphasized the need to:

  • Span a continuum from individual lives to political systems 
  • Incorporate critical examination of power and positionality 
  • Engage critical theoretical frameworks 
  • Build collaborative partnerships across diverse groups 

Thank you for your work and inspiration on this important topic. Congratulations for this fantastic product. I could see this resource being useful for introducing occupation to students in other disciplines. I would like to use the cases as exemplars for my students’ projects in health entrepreneurship. 

Comment from Educator

Ethical Roadmap

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

Project team: Claire Craig, Helen Fisher

Funded by: EPSRC

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

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

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

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

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

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

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

UTI Testing in primary care: Developing a rapid UTI test device for Primary care settings


Funders: National Institute for Health Research (NIHR) Invention for Innovation (I4I) Grant

Partners: North Bristol NHS trust, University of the West of England, University of Oxford, Devices4Dignity, Sheffield Teaching Hospitals NHS trust

Project team: Joe Langley, Rebecca Partridge, Ursula Ankeny, Naomi Rasyzk

Exploring user wants and needs from a primary care test device

GPs diagnose Urinary Tract Infection (UTI) in patients based on their symptoms. Often a urine sample is sent to a laboratory to be checked for infecting bacteria and white blood cells. This current method can take up to three days. As the patient has ongoing symptoms, the GP will sometimes prescribe antibiotics before the laboratory result is back. If this result shows no infection then antibiotics could be harmful to the patient and this use of unnecessary antibiotics adds to the increasing risk of antibiotic resistance.

Partners at the University of the West of England are developing the technology for a device which can be used in primary care settings to identify UTI bacteria and inflammation. Lab4Livings role in the project is User design, Co-design and PPI engagement.

Exploring current patient pathways for UTI testing in primary care

It is not currently possible to confirm UTI diagnosis at the point-of-care, as testing strategies, e.g. urine dipstick tests and clinical presentation, are non-specific. In practice, clinicians frequently prescribe antibiotics without clear-cut diagnosis, risking over-prescription (if the diagnosis was wrong), or potentially the wrong antibiotic (non-sensitive bacterium).

A mounting Public Health concern has identified multi-drug resistance due to inappropriate prescribing. Worldwide, scientists are anxious about the rise in “superbugs”, which may be caused by the overuse of antibiotics.

Through workshops and direct practice visits across Sheffield and Bristol the team has been exploring current testing practices around UTI. Seeking to understand user wants and needs from the potential device and looking for future opportunities in this sector that the introduction of such device much uncover.

Reviewing Prototypes with a GP in Bristol

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.

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