Introduction
New research from the Centre for Epidemiology at the University of Manchester has worked with YourRheum advisory group to discuss practices that are diverse and inclusive when recruiting children into paediatric chronic pain studies.
What problem were the researchers trying to solve?
Children and young people experiencing chronic pain are at greater risk of inequitable and poor-quality pain management, which can lead to the avoidance of medical care in adulthood
Most chronic pain research is conducted with adults who are more likely to be middle-class, white and monocultured. Children’s views are often not represented in research, especially amongst marginalised groups. This means healthcare policies and service development may not benefit those that it sets out to help.
Ensuring inclusive and diverse recruitment to paediatric pain research can be an area in which we can address this imbalance of representation.
Inclusive involvement in research has significant mutual benefits for children and young people (CYP), researchers, and research systems (e.g., funding bodies) by providing evidence that will inform healthcare policies and service development
The aim of this project was to understand why children and young people get involved in research and determine any potential challenges or barriers. Additionally, they aimed to identify what information CYP need to know when deciding to take part in research studies using group-based discussion and conversation.
The projects’ overall goal is that this decision-making information will support strategies, confirm that actions are effective, and provide opportunities for increased improvement and justification of actions in future research with CYP living with chronic pain
What did the researchers find out?
The team worked with Your Rheum, a young person's advisory group who are diagnosed with rheumatic conditions. At a virtual Your Rheum meeting, eight young people (female = 7, male = 1, age range 12–24) took part in group discussions, sharing their experiences of taking part in research and their decision process.
· That young people would be open to hearing about research opportunities
· That they rarely hear about research recruitment or are exposed to current research
· They thought that the clinic environment would be a ‘good and trustworthy’ recruitment area
• They thought being approached by a member of the research team would be ideal, even if unknown to them
They also talked about the reasons that they would participate in research. This included:
· Benefit/impact
· Connecting with others
· The research topic
Which was balanced against
· Convenience
· Reimbursement
From this they coproduced five research study recruitment recommendations
1. Research awareness – create more visibility of opportunities and exposure to research regardless of eligibility
2. Invitations to partake - inviting participants in clinic environment as it was seen to be a good and trustworthy place, and the use of familiar connections like medical staff etc
3. Considerations for the benefits of research – create an alignment with CYP values and goals for example will it benefit CYP or others like them, will they meet other young people etc
4. Considerations of personal burden – is the research convenient and will the young person be valued
5. Impact of taking part in research – gaining knowledge about the research cycle and empowerment
How does this benefit people with arthritis?
Providing inclusive recruitment in all aspects of working with CYPs will provide better development of research, will improve recruitment and retention, and provide meaningful evidence.
This is the first step to ensuring that we include the perspectives of young people with arthritis in research.
The team is now co-developing inclusive recruitment with CYPs from ethnic minoritized groups, which can inform the next steps for paediatric pain research to become more inclusive.