This project takes a user-centred approach through needs assessment, co-design, interviews, case studies and usability testing to design and develop a product range to help children with arthritis lead more active and independent lives.
Funded by Sheffield Hallam University, Lab4Living, NIHR CYP-MedTech and Sheffield Children’s Hospital
SHU supervisors: Dr Joe Langley and Nick Dulake External supervisors: Nathaniel Mills (NIHR CYP-MedTech) and Dan Hawley (Sheffield Children’s Hospital NHS Foundation Trust)
The problem Juvenile Idiopathic Arthritis (JIA) is one of the most common causes of physical disability in childhood (National Rheumatoid Arthritis Society, 2018) with between 1,000 and 1,500 children developing it each year in the UK (Silman & Hocheberg, 2002). Despite the commonality of the issue, arthritis in children is often trivialised with many products targeted towards older users highlighting an ignored cohort and the potential for new products.
The approach This research uses co-design, interviews, surveys through support groups, case studies, sketching, form modelling and prototyping to explore technologies and products to support children with arthritis and their families to enable them to live more active and independent lives. Participatory research methods involving children, families and clinicians has led to a range of prototypes being developed.
Paediatric conditions were focused on as children have an entirely different outlook on the world from adults (Cherry, 2018). For younger children, they often have an innate confidence in themselves, unconcerned about how things they do are perceived whilst their creativity is boundless as their imaginations aren’t curbed by rules of logic (Frost, 2016). As a result, this makes them an ideal target market due to their adaptability. For older children, whilst they are more concerned with their appearance and how their actions are perceived, their key driver is increasing their independence and exploring their world, which diseases like arthritis can limit. By encouraging certain behaviours such as self-management of a condition from a young age, it gets them adapted and into the routine. In adulthood then, these early experiences will give them confidence in managing their condition allowing them to live independent lives and reduce potential ‘crisis’ scenarios.
JIA was chosen as the condition as it is not an uncommon problem yet it is treated as such, with many children feeling stigmatised and isolated. The fact that it is a ‘hidden disease’ can lead to much disbelief with an often long wait to diagnosis- “I was in a lot of pain and started to get bullied as I was different” according to one child participant. With the formation of a new charity called Versus Arthritis in September 2018 following the merger of Arthritis Care and Arthritis Research UK, there was a refreshed campaign for recognition as the condition “steals from millions of people every day” (Versus Arthritis, 2018), the currency of the issue and the extent of the ignored cohort was emphasised, leading to the decision to focus on this area.
Users were at the heart of this project with initial research looking into the needs of the different stakeholders involved: the child, the parent/ carer, the healthcare professional and the teacher. Through this, it became clear how varied the key priorities were within the group:
The child wanted “something to help with pain so that [they wouldn’t] have to stop doing fun things”.
The parent/ carer, in addition to aids to distract from pain, also wanted something to help keep better track of the condition.
The healthcare professional wanted something to help motivate physiotherapy.
The teacher needed something to help with disbelief in the classroom.
Initial thoughts about briefs had centred on improving assessment, helping with everyday activities and reducing stigma. The priorities put forward by the stakeholders slightly altered the direction, driving the decision to develop four interventions simultaneously, with each targeting a key need put forward by each group:
Helping with pain management
A way to keep track more easily
Help with communication in the classroom
Through the duration of the six month timeframe, each brief was developed by Ursula to prototype level. Workshops with children who have arthritis and their families were held at the research, initial design, further development and final prototype stage in order to ensure the products were fulfilling a need as well as to tease out issues and potential improvements. Technical requirements were tested and tweaked to ensure both ease of use and safety whilst the forms were explored through physical models and sketching, taking into account both ergonomic factors of gripping difficulty and aesthetic drivers of wanting something discreet but that also validated their condition.
Outcomes Four prototypes were developed as part of the final year project:
Heat- FIX: A wearable device that helps to distract the brain from the joint pain during a flare. It can be wrapped around any joint and fastened securely in place.
“The warmth of it is really soothing- I love the degree of control.”
(child participant with arthritis)
Active- FLEX: A motivational physio tool that has an additional link to a character on the app helping to gamify and incentivise an otherwise “boring” chore. The colours are bright and energising with the gripping texture ensuring ease of use.
“I hate nagging her to do her stretches- this way she’d want to do them.”
(parent workshop participant)
Class- COMM: A wearable to help facilitate communication between the pupil and teacher when the child is in pain/ needs help. With a form similar to a Fitbit, the wearable is discreet, helping to reduce feelings of embarassment.
“Teachers have forced her to do PE as they weren’t aware – this would help with disbelief.”
JA- CONNECT: An app with different versions for parents and children to both help keep better track of the condition as well as to create a network so that parents and children don’t feel so isolated in their experience.
“The first thing that clinicians ask when I mention a symptom is ‘do you have a photo?’. This would really help in tracking changes.”
“Being able to pass tips onto other kids would be so great.”
“The University, though the Lab4Living research group, already have a strong relationship with both Sheffield Children’s Hospital and NIHR CYP-MedTech, collaborating on a range of projects with both. This enabled Ursula to benefit from research input to her undergraduate work at organisational, operational and technical levels of her project. Subsequently, following graduation, Lab4Living has provided a ready route to enable Ursula to continue her project through to implementation.
(Dr Joe Langley, Lab4Living)
The future This project has been awarded funding from NIHR CYP MedTech through Sheffield Children’s Hospital, to further develop the product outcomes, which started in October 2019. The development will focus on improving the technology whilst also looking at the connectivity aspect of the products with the app platform. The first goal is to carry out a pilot study, the results of which can then drive further improvements, with the hope being that these products will ultimately go to market.
Developing a new Parkinson’s service delivering home-based care. Using new technology the service will help Parkinson’s patients, carers and healthcare staff monitor a person’s condition remotely – ensuring care remains person-centred. This enables them to ask for contact and review at times they need it, removing the need for time-locked clinic reviews that fail to meet the needs of patients and carers, and contributes to staff stress.
Funded by : The Health Foundation Parkinson’s UK
Project team: Joe Langley Rebecca Partridge Ursula Ankeny
This project follows on from the previous project with Parkinson’s services in the South West Peninsula. These workshops uncovered issues in the way the service is currently run, with time-locked clinics, cancelled and delayed specialist appointments, vacant staff posts and arduous journeys to clinics for patient and carer.
Lack of clinic capacity results in limited ability to see those who require urgent review. Even when clinic review is timely and appropriate, the evaluation only captures how the patient is within those few minutes, and is otherwise dependent on patient recall, which can lead to erroneous assessment and inappropriate interventions. This sub-optimal provision of care contributes to staff dissatisfaction, stress and poor retention, which is a cause of significant threat to PD service resilience nationally, with 50% of PDNS vacant posts being due to long-term sick leave or resignation.
This project seeks to develop a new service that monitors symptoms on a monthly basis. It will use a Parkinson’s Kinetigraph (PKG®) a wrist worn, watch style device to monitor motor symptoms and a series of questionnaires for non-motor symptoms. Through this system patients will only need to attend a clinic when required and instead will be supported to self-manage minor changes and fluctuations supported remotely.
Through a series of workshops and prototypes, our role within the project has been to help the team develop the new service pathway, understand users’ needs and then co-design a series of training, support and learning resources with staff and patients. These will provide support information on the new pathway and signpost to self-management resources.
The project is due to recruit the first 30 patients to the pathway in September with a further 120 recruited later in the year.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
This project concerns the development of an iconic tactile language for use in the production of tactile maps.
Project team: Paul Chamberlain Patricia Dieng
Signs and symbols can generally be described as pictographs, literal pictorial representations of the real world, and ideographs that are abstracted ideas of that world. While simple pictographs can relate to particular objects, the implications for meaning can become extremely complex when they become abstracted as ideographs or combined. Chamberlain, with RA Patricia Dieng, investigated whether pictographs, ideographs or abstract symbols used in tactile maps are more appropriate for blind people to conceptualise spatial and environmental concepts and relationships.
The study involved a series of user-workshops with Sheffield Royal Institute of the Blind. Important was how blind users interpreted the tactile qualities of the maps and how partially sighted people interpreted the visual qualities of the map. The aim was to create a communicative link between for people with vision and without vision.
The work has led to a spin out company TacMap which provide a design service utilising findings from the research and create tactile maps for a range of businesses and public services that include South Yorkshire Transport Executive and The Queen Elizabeth Olympic Park by the London legacy Corporation.
The Disability Discrimination Act (DDA) is placing demands of the public sector and industry to make buildings and facilities accessible, usable and safe for disabled people, and there is clearly a gap in a provision for the visually impaired. The research has involved the UK Universities Safety and Health Association (USHA) and considered how tactile symbols could support the Personal Escape and Evacuation Programme (PEEP).
‘This is wonderful, this illustrates so many things; plans are really useful, and it is great to be able to go in a room like for example here the toilets and to know where the basins, the WC and the hand dryers are’
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.
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
Related research on Sheffield Hallam University’s Research Archive
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.
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.
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.
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.
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).
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
CLAHRC- SY Sheffield Teaching Hospitals NHS foundation Trust Physioworks Sheffield
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.
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.
Parkinson’s Disease (PD) is a highly complex progressive neurodegenerative disease. Individuals experience PD in a wide variety of ways, leading to difficulty in diagnosis, acceptance and on-going management. Service provision is complex and varied depending on provider. This project utilised a participatory design methodology to identify patient and provider needs for PD services in the South West Peninsula. Then used co-design to develop tools, resources and service structures to meet these.
Funded by : Bial Pharmaceuticals University Hospitals Plymouth NHS Foundation Trust Sheffield Hallam University
Partners: University Hospitals Plymouth NHS Foundation Trust Sheffield Hallam University Livewell Southwest People living with Parkinson’s Disease and their family’s/carers Parkinson’s UK
Project team: Joe Langley Rebecca Partridge
Parkinson’s occurs when a small group of nerve cells in the brain no longer produce enough dopamine. This is a chemical that transmits messages from the brain to other parts of the body, enabling people to perform smooth, coordinated movements. Insufficient dopamine messes up these transmissions. Although typically associated with tremors, muscle stiffness and slower movements, it is also associated with a wide range of other symptoms including nightmares and night sweats, hallucinations, reduced facial expressions, depression, loss of taste and smell and ‘freezing’ (where someone suffers a temporary lack of ability to take a step, speak or communicate).
This highly individualised experience leads to difficulty in diagnosis, acceptance and on-going management. There is currently no cure for Parkinson’s so symptoms are managed through a combination of drugs and self-management (exercise, sleep hygiene etc.). The first year following diagnosis is involves many different healthcare professionals such as; Speech and Language Therapists, Dietitian’s, Occupational Therapists, Physiotherapists, a Parkinson’s Nurse Specialist and Neurology Specialist Consultants.
The provision of Parkinson’s services is complex and varied depending on provider. Services in the South West Peninsula cover acute and community settings, cross multiple regional and budgetary boundaries, cover a large geographical and rural area and have staffing pressures from unfulfilled roles, long term sick leave and increased patient numbers.
People living with Parkinson’s and their families and carers
Parkinson’s Specialist Nurses
Community care teams
Parkinson’s UK Charity representative
To improve the patient and staff experiences of using and delivering services in the South West Peninsula, this project utilised a participatory design methodology to identify patient and provider needs and generate a series of solutions to these needs. A wide range of design research techniques were implemented that included; Lego® Serious Play®, Persona creation, Service Mapping and Prototyping.
Five full day workshops explored
What are staff and user experiences?
How is the service currently run?
What could be different?
Prototyping and Testing
As a result of these workshops, five concepts are currently in development: A Parkinson’s Patient passport; New service and local information; a media campaign; a card deck to support therapeutic sessions; a self-management support and general information package. In addition further funding has been secured through The health Foundation to progress the development of a Home based Parkinson’s care service.
An evaluation is currently being undertaken with participants from both sites to explore whether there was a difference in the experience and impact between wards engaged in the creative practice and co- design of the critical artefacts in comparison to the ward that was not. It will reflect on how the artefacts had been utilised and any possible strategies that the wards have found useful in relation to identifying and implementing positive deviant behaviours