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GRIP: Promoting exercise after stroke and transient ischaemic attack

GRIP: Promoting exercise after stroke and transient ischaemic attack

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

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

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

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

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

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

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


Stakeholders involved

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

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

Methods used

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

Participants and students take part in workshop activities

Student engagement

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

Participants and students take part in a workshop

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

Mark Fisher, BA Hons Product Design course tutor

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

Findings

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

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

Student Learning

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

Student participant

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

Joe sharing concepts at workshop

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

Mark Fisher, BA Hons Product Design course tutor

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


Dayna Booth sharing concepts at stroke ward

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

Final year student participant

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

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

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

Final year student participant

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


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

Participants and students take part in a workshop

Enabling Ongoingness

This research seeks to understand the benefits that design and digital technologies might bring in offering new ways to, firstly, express a sense of who they are in the present, and, secondly, to make objects and media content that will support other people after one’s death

Funded by EPSRC

Partners: Northumbria University; Newcastle University; BBC;  Marie Curie; CRUSE Bereavement; National Council for Palliative Care

Project lead: Claire Craig

Project team: Helen Fisher

The project is a design engagement with older people, people living with dementia, people approaching the end of their lives and people who are bereaved.

We are living in a time when life expectancy is the highest it has ever been (81.5 years average life expectancy in the UK).

However, this positive achievement of medicine and modern ways of living means that as the nature of growing older is changing, so too is end-of-life. Whilst promoting the inclusion of older people in society enriches our social make-up it also gives rise to new challenges.

For example, there is an increasing demand for care, but reductions in resource available to support the older old and a reduction in people using local authority supported care services.

In terms of bereavement, studies have identified a huge hidden cost associated not only with increased mortality of the bereaved but also their increased hospital stay and bereavement-related consultations. In Scotland alone this hidden and latent cost translates into £20 million per year.

Of the 500,000 people who die each year in the UK, currently around 92,000 die with unmet needs for palliative care. The increasingly complex needs of more people who are living longer with life-limiting conditions is positioned by Hospice UK as a current grand societal challenge as the demand for care at the end of life is set to rise steeply between 2016 and 2025.

“This research addresses the big questions to interrogate the meaning of life and death in the digital age”

(Ongoingness participant).

Personal digital content and assets are continuously being created, by us and around us. Through social and personal media we are creating status updates, voice recordings, conversations, videos, photographs and blogs which all contribute to the coalescence of a digital trail and identity. However, what we cannot purposefully do is curate these digital assets to specifically support a sense-of-self, help people deal with their own approaching end-of-life, nor help others deal with bereavement.

This research study therefore seeks to work with individuals facing major life transitions to help curate their digital content through a creative process to embed this within a series of personal digital artefacts that the person will own and which will support them at points of transition (e.g. following bereavement, managing a long term condition).

NIHR Knowledge Mobilisation Research Fellowship

Dr Joe Langley’s three year fellowship explored the added value of design and making as a form of facilitating co-produced research, and of sharing, synthesising and activating knowledge within participants, systems and organisations. This work resulted in personal development in co-design and co-production and had a particular focus on the impact activities could have on relationships and systemic power structures.

Funded by:
National Institute of Health Research (NIHR)

Partners:
NIHR CLAHRC YH, Royal College of Midwives, The University of Sheffield, Bradford Royal Infirmary, Sheffield Children’s Hospital, NIHR Devices for Dignity HTC, TITCH Network

Project team:
Dr Joe Langley

Creativity, Innovation, Design (George Cox)

Background to the NIHR Fellowship programme

£8 billion per year is spent on health-related research and there is increasing pressure to demonstrate a return on this investment. Yet translation of health services research knowledge into everyday practice remains a challenge.

The fellowship programme aims to advance knowledge and understanding about research use, influence and impact. It looks at how research can be blended with other knowledge, such as professional practice and patient experiential knowledge. This opens the door for participatory and co-produced research methods in particular.

Through the Knowledge Mobilisation Research Fellowships, the NIHR enables up to five individuals to explore the mechanisms, barriers and enablers of Knowledge Mobilisation and to mobilise some health services research knowledge into everyday practice.

“Making things together is a great leveller.”

Prof Jo Cooke, mentor
Think with your hands

Joe Langley’s three year Knowledge Mobilisation Research Fellowship was the first to be awarded to a researcher from outside the health disciplines. The fellowship has explored the added value of design and specifically making, within the context of co-produced research; of sharing, synthesising and activating knowledge within participants. Joe’s interest in this is focused on the creative, practical activities of ‘making’ employed by designers and applying them in participatory health research and innovation.

During the course of the fellowship, Joe’s research began to focus in particular on the impact those activities could have on relationships, systemic power structures and hierarchies in health and in wider society. The prevailing mode of communication within many such hierarchies is written and spoken language, a mode of communication associated with knowledge – and therefore power.

“This was an amazing opportunity for me to really get ‘inside’ this complex and, initially, slightly alien field. I have a far greater understanding, met some inspirational people, established great relationships and have been able to open doors to expand the work I do.”

(Dr Joe Langley)

Language is often used (consciously and unconsciously) as a means of excluding different ‘tribes’ of people, creating impenetrable barriers of sounds or ciphers that demonstrate (often academic or intellectual) ‘expertise’ whilst ignoring expertise by lived experience.

Design uses a visual language form of communication to share ideas, knowledge, information and complex concepts. In addition, design practice also uses the activity of making things (prototypes, doodles, mock-ups) as a means of thinking, reflecting and considering specific questions and challenges.

When such practices and techniques are shared with other stakeholders in a co-design initiative, and designers or design researchers take on a facilitating role, it achieves two principal things:

  • practical, making activities enable people to reflect on questions, experiences and complex ideas before they respond to the question or challenge posed. Hence their responses are more considered and they often realise tacit or unconscious knowledge about their experiences that may not have been revealed through other, more direct forms of enquiry
  • the things they make become part of the visual mode of communication that augments their ability to collaborate with others from different backgrounds, creating a more level playing field

Deduction, Induction, Abduction

Methods

This fellowship brings together knowledge, understanding and expertise from multiple worlds:

  • clinical practice (healthcare delivery)
  • health services research
  • implementation, knowledge translation or knowledge mobilisation research
  • design practice
  • design research

“I am still challenged and sometimes frustrated by a common academic view of the Journal paper as the end goal; as ‘impact’. Sometimes this view is held because it is just very difficult to translate knowledge (words on paper) into actions. There is no escaping this; it is hard. But this is what designers and engineers do. Their disciplines are translational, and there is an opportunity for more academics to collaborate with designers and engineers in their research from the start, not as an afterthought.”

Dr Joe Langley, Knowledge Mobilsation Fellow

Some of these worlds were less familiar to Joe. Hence, Joe’s methods were aimed at increasing familiarity with the first three areas and then experimentally utilising the design methods within them (in co-design settings) to gain an understanding of what was happening from a Knowledge Mobilisation (KMb) perspective.

“I come from an engineering background and now use design and co-design practises within my research, working with Health Research Scientists, clinicians and patients. This gives me opportunities to use hybrid methods drawing on all these areas. This fellowship has given me a far broader appreciation of how different disciplines, expertise and world views can be woven together to create holistic knowledge that is pragmatic, relevant and works in-practise-in-context.”

Dr Joe Langley

A literature review, which focused on the area of Implementation and KMb, together with participation at a range of national and international research, clinical and innovation forums in these areas (including Garfield Innovation Center, Kaiser Permanente, San Francisco; Karolinska Institutet Stockholm, Mayo Clinic, Rochester, USA), rapidly increased Joe’s understanding of Knowledge Transfer (KT), Implementation Science and KMb (in the field of healthcare). Immersive experiences in a Metabolic Bone centre in Sheffield Teaching Hospitals NHS Trust, collaborations with YH CLAHRC and undertaking a number of case studies increased Joe’s understanding of clinical practice and health services research.

During the fellowship, Joe was mentored by experts from different fields of expertise

  • Prof Jo Rycroft-Malone (Pro Vice-Chancellor, Research & Impact & Professor of Implementation & Health Services Research, Bangor University) – implementation science
  • Prof Jo Cooke (Deputy Director and Capacity Lead, NIHR CLAHRC Yorkshire and Humber and Honorary Professor of Health and Social Care Research, Sheffield Hallam University) – applied health research
  • Prof Paul Chamberlain (Director of Art and Design Research Centre and Lab4Living) – design research
gamified smart inharler

“When Joe was awarded his knowledge mobilisation fellowship the contribution of design thinking and science to implementation research had not been explored. This has changed significantly, largely due to Joe’s work in raising the profile and potential of design science.

During this time it has been a pleasure to work alongside Joe. His creativity, energy and enthusiasm has brought some much needed fresh thinking to how we can improve health and care services through genuine partnerships and the co-creation of knowledge.”

Professor Jo Rycroft-Malone, Mentor

Case Studies

Five case studies emerged through the collaboration with YH CLAHRC and enabled Joe to apply and ‘play around with’ design and co-design practices in health service and health services research initiatives.

  • Improving midwifery services with and for mid-wives and expectant women – see below
  • Developing a mental capacity assessment support tool (MCAST) with and for speech and language therapists in community and hospital settings – see below
  • Development of a testicular volume assessment tool and training kit – see below
  • Designing gamified smart inhalers with and for school age children – resulting in concepts and working prototypes
  • Designing an emotional support tool with and for patients on an acute cardiac ward – resulting in concepts and working prototypes for a complex support tool that includes peer networks, paper and digital based components for patients and family members.
Developing an emotional support tool for patients on an acute cardiac ward

Case study #1

Better Births by Design: Improving midwifery services with and for mid-wives and expectant women

In this case study, which focused on improving midwifery services, two midwifery teams (one community team in Colchester and one hospital based team in Preston) participated and were trained and mentored in using co-design as a means of improving their services. An evaluation was carried out by an independent academic from Bangor University nine months later with positive outcomes.

2 years on and both teams still tweet about their co-design and improvement activity.

Case study #2

MCAST: Developing a mental capacity assessment support tool

Mental Capacity Tool
Mental Capacity Tool

A toolkit for assessing mental capacity has been developed with and for speech and language therapists in community and hospital settings. The toolkit is currently being tested/evaluated via a clinical trial in Sheffield Teaching Hospitals.

2 years on and both teams still tweet about their co-design and improvement activity.

“I have really enjoyed working with Joe. Using design in health services research has been highly insightful and formative in our thinking about co-production in the CLAHRC, as you can ‘see’ authentic partnership working in action. The process of making things helps to uncover people’s ideas and thoughts, to share them, and provide opportunities for synergy. Making things together is a great leveller and pays attention to power issues in the sharing process. 

Design and design thinking should be an important consideration in the shape of future health service research teams.”

Professor Jo Cooke, Mentor

Case study #3

Testicular Volume Assessment: Development of an assessment tool and training kit

In this case study, a prototype simulation model was designed and built to test the accuracy of paediatric endocrinologists’ volume assessment. Once data was collected and evidence of inaccuracy established, we explored alternative approaches to training, co-designing (with endocrinologists and students) a package that included simulation and physical analogies based on everyday objects.

This was piloted in 2017 with one cohort of trainee Paediatric medics and is currently being revised based on the feedback.

Resources

Related research on Sheffield Hallam University’s Research Archive

Related news on the C3Ri Impact Blog

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

Toilet Talk

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

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

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

Project Team:
Project lead – Dr Joe Langley

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

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

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

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

Impact

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

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

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

(Dr Peter Culmer, project partner at IMPRESS)

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

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

Impact

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

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

Head-Up

Motor Neurone Disease (MND) is a rapidly progressive neurodegenerative disease, with individuals developing weak neck muscles, leading to pain, restricted movement.

This research built understanding of optimal requirements for a supportive neck collar with flexibility to allow functional head movement. Through an iterative prototyping process the HeadUp Collar, a class one medical device, has been patented.

Funded by:
National Institute of Health Research
NIHR Devices for Dignity
Motor Neurone Disease Association

Partners:
University of Sheffield SITraN (Sheffield Institute for Translational Neuroscience)
NIHR Devices for Dignity
Motor Neurone Disease Association
Sheffield Teaching Hospitals NHS Foundation Trust
Barnsley NHS Foundation Trust
TalarMade

Project team:
Heath Reed – Team lead
Joe Langley, Andy Stanton

Co-design workshops brought together people living with MND, carers, clinicians and designers. Participatory methods, including qualitative interviews, 2D visualisation and 3D mock-ups, helped build understanding. 

The study is an example of collaborative, interdisciplinary research and new product development underpinned by participatory design. The NIHR i4i funding enabled the team to iteratively develop and detail the product over a 24-month programme.

“This is a product that can be completely customized to the patient’s needs and requirements – that’s the huge benefit and the beauty of the collar and its design.”

(Liz Pryde, Devices for Dignity)

The proof of the pudding for me was that they were coming to clinic wearing the collar, it wasn’t in the drawer with the other collars.

(Chris McDermott, Consultant Neurologist)

Following the iterative prototyping process the HeadUp collar, a class one medical device, was patented. It has undergone multi-centre clinical evaluation with results indicating that the product meets user requirements and showed an increase in the number of hours the collars are used, compared to existing neck orthoses.

It looks like clothing, really, rather than a medical device. Without the collar, I wouldn’t be able to drive and that makes a huge difference. With a rigid collar, you can look ahead but you can’t turn your head to see the traffic, but with this collar you can do that. It’s life-changing really.

(Philip, wearer of HeadUp Collar)
Over 1500 units sold in the first year

That’s 1500 people now able to get on with their lives with the support of this simple collar.
Talarmade were shortlisted for the Partnership with Academia Award at the Medilink North of England Healthcare Business Awards 2019.

The collar, now known as HeadUp, is available to purchase from local manufacturing company TalarMade, who have more than 30 years’ experience in developing clinical innovations for use in rehabilitative and orthotic practice.

GRIP: Developing an education resource for people with Low back pain.

This project, funded through the Getting Research into Practice (GRIP) programme, used co-production and creative methods to inform the design of an educational resource for people with lower back pain in Sheffield.

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).

Team:
Rebecca Partridge

Partners:
Rick Webber – specialist physiotherapist, Sheffield Teaching Hospitals NHS Trust
Cheryl Grindell- Sheffield Teaching Hospitals NHS Trust.

Current UK NICE low back pain guidance recommends patient education to improve self-management, however current evidence on how best to provide this education is unclear. Beliefs associated with a traditional biomedical view of lower back pain can

be a barrier to recovery.
Education that helps people reframe their problem as complex and multifactorial may help patients accept and engage with more positive attitudes and behaviours. Passive information rarely leads to these behaviours.

The creative co-design process applied in this project provided a different approach to the traditional top down method of research and intervention development. It encouraged a collaborative problem-solving approach and fostered a non-hierarchical inclusive approach to knowledge mobilisation.


Stakeholders involved

CLAHRC- SY
Sheffield Teaching Hospitals NHS foundation Trust
Physioworks Sheffield

 


Methods used

To develop the education resource, service users and providers were brought together in two co-production workshops. In the first workshop, we explored the lived experience of back pain. Participants were invited to share their experiences to generate a shared understanding of the complexities of living with and managing back pain.

The second workshop focused on idea generation to support and manage some of the complexities highlighted in the previous workshop. From these ideas, a series of prototypes were developed and tested within Sheffield Physio works.


Project Outcome

New educational resources were developed and have now been implemented within Physio works, Sheffield. The resources include a patient workbook and a series of information leaflets. All these resources are available physically and online.

As a result of patient feedback during the workshop, an improved interactive education session was developed to align to the new resources.