First 100 days of JIA
experience design + co-design
This project was led by Dr Rebecca James, a Rheumatologist at Queensland Children's Hospital. After receiving funding from Avant to re-design the first 100 days of Juvenile Idiopathic Arthritis (JIA) for children and their families, Bec brought me onto the team to lead the co-design process - using creative methods to co-design care with consumers, as well as working with the Rheumatology team to piece together a detailed picture of what is happening from a clinical perspective.
This project became a culmination of all of my co-design practice and research thus far, presenting a rare opportunity in which we had the time, space and flexibility for truly creative, messy, unpredictable, adaptive and meaningful co-design.
This is the story of what happened when a paediatric rheumatologist, an experience designer, a project officer and the mother of a child with JIA embarked on a 12 month co-design quest to reimagine the first 100 days of Juvenile Idiopathic Arthritis with children and their families at Queensland Children’s Hospital.
The state of JIA
JIA is the most common chronic rheumatic disease of childhood, affecting anywhere from 1 in 1000 to 1 in 250 children. Yet, many people have no idea that children can get arthritis, viewing it as an "old person's disease". Untreated, it causes pain, inflammation, joint damage and disability. The first 100 days after a child is diagnosed represent a critical window to achieve disease remission and set the patient and family’s expectations and confidence for their future interactions with healthcare.
Planning our project
At the outset of the project, before appointing a project officer or bringing on our consumer advocate, we began to scaffold a rough project plan. This became a living document, leaving room for ambiguity and allowing the direction of the project to emerge from the needs of both JIA families and the rheumatology team. This allowed the team to creatively adapt their methods as barriers and opportunities arose.
Making our manifesto
One of the barriers that became immediately obvious was our lack of access to the rheumatology team. In initial discussions with the team, we learned of their incredible time pressure, burn-out and difficulty finding the time to provide families with the care they deserved. We wanted to bring the team along the co-design journey with us, without adding extra burden.
To make sure that the project would be aligned with their needs and aspirations from the outset, we found a slice of time within their annual planning day to present some of our initial findings and make a manifesto that would set the tone for the entire project.
We took a playful, creative and adaptive approach to the collaborative process, using both synchronous methods (like interviews and workshops) as well as asynchronous methods (like probe packages and card-making kits) to document the experiences of families and clinicians. Below are some examples of the methods that we used.
We began the project by interviewing families, asking them to reflect on their first 100 days of JIA. We quickly realised that to truly understand the first few months after diagnosis, we would need to find ways to document it as it was happening. We were lucky to find a family who had just received their diagnosis and were willing to be involved, so we created a customised package based around the nuances of their family and the ways in which they wanted to document their experience. We sent them calendars, diaries, cameras and activities to complete after each milestone. We heard about the highs and the lows, as well as what they needed to feel supported in each moment.
While we were focussing specifically on the first few months after diagnosis, we quickly learned that the long referral period before diagnosis can be the most challenging and harrowing for many families. The admin officer for the rheumatology department was the main point of contact for families during this time, and we wanted to find a way to capture what she was hearing. Given that she was notorious for her playful desk decor, I made her a colourful "desktop probe" with slips to collect the gripes and goodness that she was hearing from families. This was crucial in understanding how we could better support families during this time.
As the co-design process went on, we realised that we were connecting with many parents, but not hearing as many stories from children first-hand. We wanted to know what children needed at the point of diagnosis, but we needed to be creative to capture these insights. So, I created card-making kits for the waiting room, which children could take home with them. Each kit came with a blank card, an addressed and stamped envelope, some information about the project and a prompt for them to create a card for another child who has just been diagnosed with JIA.
Several months into the project we found ourselves swimming in qualitative data.To organise the data I created a comprehensive experience map, including: a timeline of every interaction that families have with the rheumatology team; a timeline of the clinical processes behind those interactions; every single resource and touch point that families were receiving; quotes that showed what families were seeing, hearing, feeling and wanting; key problem areas; and a collection of ideas and opportunities that were naturally emerging through this process. Below is the initial version of the map, which eventually evolved into simplified themes and insights to present back to our co-designers.
Once we had a clear idea of the main problem areas, we reconnected with families. First we presented all of our findings back to families, making sure we hadn't missed anything. Then we ran a series of three workshops to prototype potential solutions. The first workshop was centred around what families need to prepare for their appointment, the second explored the appointment itself and the education they receive, and the third focussed on ongoing support.
Given the complexity of our proposed service re-design, I wanted to create a simple solution map that encapsulated all of the solutions that emerged from the co-design process, as well as key problem areas and insights for each stage of the first 100 days experience. This map formed the basis of our recommendations moving forward. We then prioritised solutions based on what was most achievable in the short-term and what required further funding.
Many of these solutions are currently being developed, and the project team have received additional funding to bring some of our more ambitious ideas to life. We would like to thank all of the families and clinicians who generously shared their stories and their time to improve the first 100 days for other JIA families.