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Lab4Living researcher & PhD candidate Ursula Ankeny’s JIA Toolbox project has reached significant milestones in its feasibility study, developing devices to help children with juvenile idiopathic arthritis (JIA).
BACKGROUND & PROOF OF CONCEPT
Ursula Ankeny came up with the concept of a product range to support the independence of children living with JIA, in 2019 during her final year studying BA (Hons) Product Design.
JIA, although not an uncommon condition, is often treated as if it were, leaving affected children feeling stigmatized & isolated. One of the key insights from the early stages of the project was the realisation that many products targeting arthritis sufferers were designed with older users in mind, neglecting the specific needs of children – which highlighted the potential for new, innovative products tailored specifically to younger patients.
In the early stages, four prototypes were developed to address the unique needs of children with JIA:
- A wearable device that helps distract the child when in pain
- A motivational physiotherapy tool to gamify & incentivise what is often seen as a “boring” chore
- A wearable smart watch to facilitate discreet communication between the child and their teacher when the child is in pain or needs help
- An app, available in different versions for both parents and children, to track the condition and create a network, helping families feel less isolated in their experience
In October 2021, the project received funding from The Children’s Hospital Charity, allowing for further development and a real-world proof-of-concept assessment of these devices. Co-design workshops were then run to gather feedback & test the prototypes with 10 children over a six-week period.
An unexpected delay in this phase was the significant delays in electronics needed to build the prototypes due to disruptions in the global supply chain during COVID-19. A three-month extension was awarded to mitigate the impact on project timeframes as a result.
Read further details about the proof-of-concept study phase of the JIA project here.
FEASIBILITY STUDY
A yearlong feasibility study, funded by the Medical Research Council was undertaken in 2024, which implemented the improvements identified during the proof-of-concept study to start.
Through collaborating with key partners, including Juvenile Arthritis Research (JAR) charity, who were instrumental in recruiting participants, and Your Rheum, further co-design workshops were conducted to provide feedback on the prototypes to refine the designs further.
Ursula faced another setback during this phase:
“As the prototypes were refined, I faced an unexpected challenge. I had initially planned to work with a manufacturing company to produce the devices, but after discussing the project in more detail, there were concerns about capability and capacity to handle the project. It led to the end of that partnership, resulting in responsibility of managing the manufacturing process shifting to me”.
“While this was a frustrating and difficult setback, in hindsight, I see it as a blessing in disguise. Taking control of the manufacturing process allowed me to have more flexibility and make last-minute changes to the prototypes. It also gave me more control over quality and the ability to address any problems as they arose.”
After successfully producing the prototypes, they were to be tested with a cohort of 25 children, who’ll be testing the prototypes over three months, with the goal of gathering further data on the effectiveness of the prototypes with a larger cohort over a longer time frame.
Recruiting children in this phase was initially challenging. “I learnt from last time that it takes a long time & it just wasn’t quite as easy as I’d expected”
“It is quite a lot of a demand to ask of someone [to test the prototype]. Three months is very different from six weeks, so that has been a bit of a barrier.”
But a breakthrough was reached at the beginning of this week with the help of JAR, & recruitment levels were finally reached. Since the first batch of children were enrolled, feedback has been really encouraging:
“One parent said their child uses the pain management device every day & can now hold a stretch for the whole length of time, whereas before he quite struggled with that. Prototype 3 has been amazing to help with his stutter. He doesn’t feel embarrassed asking for help.”
“One parent also said she loves the pain management tool. Her child was at school & the painkillers weren’t doing much, & she wished that she had taken it in to use because it had helped a lot previously.”
Currently, Ursula is working on gathering the data until August. She hopes the successful feedback so far will continue to grow & ultimately, that these products will reach a wider audience, helping children with arthritis better manage their condition & improving their quality of life.