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

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).

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.