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Co-producing research study recruitment strategies with and for children and young people for paediatric chronic pain
Daniela Ghio1, Laura E Lunt2,3, Angharad Bridges4
1Division of Psychology and Mental Health, Faculty of Biology, Medicine and Health, School of Health Science, The University of Manchester, Manchester, United Kingdom.
Insights
Engaging young people in chronic pain research requires better awareness and communication. Co-producing recruitment strategies with youth can improve participation and pain management equity.
Area of Science:
- Paediatric Pain Research
- Health Equity
- Clinical Trial Recruitment
Background:
- Children with chronic pain face risks of inequitable pain management.
- Current research predominantly involves adults, leading to underrepresentation of diverse youth populations.
- Inclusive recruitment is crucial to address imbalances in paediatric pain research.
Purpose of the Study:
- To explore current recruitment practices in paediatric pain research.
- To co-produce recommendations for effective recruitment strategies with young people.
- To enhance representation in chronic pain studies.
Main Methods:
- Collaboration with a UK youth advisory group (Your Rheum) of individuals aged 11-24 with rheumatic conditions.
- Virtual group discussions with eight young people (7 female, 1 male; ages 12-24) about their research participation experiences.
- Utilized online tools like Mentimeter and Miro to facilitate idea sharing.
Main Results:
- Most participants (n=5) had prior research experience.
- Young people desire greater awareness of research opportunities and prefer recruitment within trusted clinical settings.
- Key participation factors include potential benefit, social connection, research topic, convenience, and reimbursement.
Conclusions:
- Understanding participant perspectives is vital for successful recruitment strategies.
- Co-produced strategies can enhance inclusivity and increase research participation.
- Empowering youth in research fosters ownership of their pain management.
Introduction:
Children and young people experiencing chronic pain are at greater risk of inequitable and poor-quality pain management, which has implications for future management of pain in adulthood. Most chronic pain research is conducted with adults who are more likely to be middle-class, white and monocultured. Inclusive and diverse recruitment practices in paediatric pain research can be an area in which we can address this imbalance of representation. The aim of this current work was to explore these practices and to co-produce recommendations regarding recruitment strategies for paediatric pain research.
Methods:
The research team worked with Your Rheum, a United Kingdom young person's advisory group (ages 11-24 years) and diagnosed with rheumatic condition(s), the opportunity to input into rheumatology research. 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. Online tools, including Mentimeter and Miro, were used to aid conversations and share ideas.
Results:
Most young people had experience of taking part in research as a study participant (n = 5). Recommendations synthesised included increased awareness of research in general. The young people discussed being open to hearing about research opportunities; they reflected that they are rarely exposed to these invitations or hear about current research. The clinic environment was highlighted as a "good and trustworthy" recruitment area - being approached by a member of the research team was considered ideal, even if it was someone they had not met previously. Many young people recalled little discussions of research at their clinical appointments. Deciding to participate in research included the following considerations: benefit/impact; connecting with others; research topic; which is then balanced against convenience, and reimbursement. The young people felt that taking part in research was empowering and helped them take ownership of their pain management.
Conclusion:
It is essential to understand the perspectives of potential study participants, to plan successful recruitment strategies. Ensuring we consider these factors when designing our studies and recruitment strategies is beneficial to all involved. Co-produced recruitment strategies would aid inclusive (and increased) research participation.
