Making healthcare better for kids: listening to their voices
19/05/2025
Health is about more than just the symptoms a child may have – it's also about how they are feeling emotionally and how their condition impacts their daily life. When a child sees a doctor or nurse, it’s important that their practitioner has an understanding of their overall health and wellbeing.
This is where child-friendly health questionnaires come in. Using age-appropriate language, they are designed to ask kids about their perspectives on their overall health and quality of life to share with their doctors and nurses. These questionnaires are also known as ‘paediatric patient-reported outcome measures’ or ‘health-related quality of life questionnaires’. An example of a paediatric patient reported outcome measure is the EQ-5D-Y-5L, it asks about a child’s mobility, self-care, usual activities, pain/discomfort, and if the child is feeling worried, sad or unhappy.
The co-design process
While we thought these questionnaires would be helpful when used in clinical care, we wanted to work with young patients, their parents, and their doctors and nurses to design the best way to incorporate them into appointments at The Royal Children’s Hospital.
That's why we conducted the P-PROM ROCK Study. We brought children, parents and practitioners together online to talk through how we could integrate one of these questionnaires (the EQ-5D-Y-5L) into clinical care. Children had the opportunity to draw and be creative in these online forums. We also caught up with children and their parents one-on-one to get extra feedback and ideas from them.
‘When we only have adults in the design room, we can often be quite boring in the way we design and think about things.’
In the end, the children, parents and clinicians designed the P-PROM ROCK Program, which is a guide to using the EQ-5D-Y-5L questionnaire in hospital appointments. They designed how we would ask and support families to complete the questionnaire, how we would train clinicians to introduce them, and easy-to-understand resources so families and clinicians can respond if they were worried about some of the child’s answers.
It was essential for us to have children involved in this co-design work. Many of the researchers and other co-design participants reflected that the children brought joy and creativity to the design. When we only have adults in the design room, we can often be quite boring in the way we design and think about things. The children ensured we were creative and what we ended up designing was suitable for children.
Picture drawn by young patient during co-design workshop.
Implementation
The P-PROM ROCK Program was later trialled in four outpatient clinics at The Royal Children’s Hospital. The trial proved that the P-PROM ROCK Program was acceptable and feasible, which is largely due to children and their parents being involved in the program design.
The P-PROM ROCK Co-design study has recently been published. Importantly, two of the children and three of the parents involved in the study helped to co-author the publication. The children and parents provided essential feedback on the manuscript, often via one-on-one meetings where we would meet and go through the manuscript together. Involving children and their parents in the manuscript publication helped to ensure the manuscript reflected their perspectives on the co-design process and outputs. It also helped to ensure that they had ownership over how the design process and their final design output was communicated with the world.
Read our latest publication on the co-design process
For further details, contact Renee Jones.
A photo from our recent consumer event. From left to right: Kim Dalziel, Nancy Devlin, Penny Richards Fowler, Kirsten Pini, Max Pini (front middle), Tanya Wolfe, Renee Jone, Harriet Hiscock, Kath Feely, Kathe Holmes.
