The PCH team began by partnering with 850 parents/carers across Australia to identify their top 10 research priorities in a multistep process involving online surveys and a consensus workshop. This gave Australian consumers the opportunity to shape the paediatric anaesthesia research agenda. Their top priorities were safety, anxiety, and pain management.
Since completing the project, the research team has developed new studies addressing the top priorities for parents, such as the STARFISH project investigating the use of sensory toys to help manage children’s pre-operative anxiety, which addresses the number 2 and number 7 research priorities for parents.
While this was an important exercise, the team was aware that the concerns of parents/carers may not always reflect those of their child. Therefore, we decided to repeat the project, but this time working with children and young people aged from six to 18 years.
As the person who leads the consumer prioritisation projects for the team, I know there was some concern around whether we could engage enough children and teens, particularly as a key first step involves consumers entering research ideas in free text in an online survey. We were a bit worried that we wouldn’t get ideas from the children and young people, so we added in an extra step of an online community conversation in parallel to the idea-generating survey. These two combined ensured we had sufficient research ideas to move the project forward.
Parents and researchers discussing research priorities for children having anaesthesia at the consensus workshop in September 2021.
After an interim prioritisation survey and a final consensus workshop, both held online, the final top 10 priorities of Australian children and young people was complete. The project, which has engaged more than 350 children and young people from all Australian states and territories, was a great success; and our initial concerns were not realised. In fact, the young consumers were engaged, passionate, and very keen for their voices to be heard.
The priorities of children and young people differed from those selected by the parents/carers. In fact, there were only five common priorities in the top 10 lists when those of children and young people were compared to those of parents/carers. Other interesting differences included the importance that children and young people placed on the effects of anaesthesia on mental and emotional health, how medicines worked differently between people, and whether children felt pain differently.
These prioritisation projects undertaken by the Anaesthesia Research Team have made a valuable contribution, not just with guiding research, but also matching the needs of funding agencies who are increasingly placing importance on meaningful engagement with consumers.
Following on from these projects, the team has worked with parents/carers, paediatricians, GPs, and Down Syndrome WA to identify the top 10 consumer research priorities for children with Down syndrome. The top two were:
1) developing a “gold standard” model of care, including screening health checks across all levels of care; and
2) sleep quality (including obstructive sleep apnea, snoring, breathing problems, circadian rhythm).
