to top

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.

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:

Design and production system for carbon fibre ankle foot orthoses

Dynamic manufacturing provides a way to be responsive to the demands of the market and can help to create and accelerate production development. In this programme of research, Lab4Living researchers investigated new ways to design and produce carbon fibre ankle foot orthoses (AFOs).

Funded by Trulife.

Partners:
Trulife

Project Team:
Design Lead – Nick Dulake

The enquiry gathered and analysed published anthropometric data. This was used to create the master CAD design file. The model was parametric, meaning that key dimensions could be changed whilst maintaining dynamic relationships. As a consequence, the master file could be used to create distinct new products that varied in scale or proportion. This meant that the foot orthosis could be customised to an individual. Prototypes were used in development testing with users.

The new system has been the catalyst for a leaner production process within Trulife’s factory in Sheffield, UK. At the end of the project, the new system was capable of producing over 270% of the output when compared to previous techniques whilst achieving higher quality and better consistency of product.

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


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.

Resources

Related research on Sheffield Hallam University’s Research Archive will be posted here