Ghio Daniela, Lunt Laura E, Bridges Angharad, Gahr Lydia, Hood Anna M
Division of Psychology and Mental Health, Faculty of Biology, Medicine and Health, School of Health Science, The University of Manchester, Manchester, United Kingdom.
Centre for Musculoskeletal Research, Versus Arthritis Centre for Epidemiology, The University of Manchester, Manchester, United Kingdom.
Front Pain Res (Lausanne). 2024 Jul 23;5:1358509. doi: 10.3389/fpain.2024.1358509. eCollection 2024.
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.
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.
Most young people had experience of taking part in research as a study participant ( = 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.
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.
经历慢性疼痛的儿童和年轻人面临着疼痛管理不公平和质量差的更大风险,这对成年后的疼痛管理有影响。大多数慢性疼痛研究是针对成年人进行的,这些成年人更有可能是中产阶级、白人且文化单一。儿科疼痛研究中的包容性和多样化招募做法可能是我们可以解决这种代表性不平衡问题的一个领域。这项当前工作的目的是探索这些做法,并共同制定关于儿科疼痛研究招募策略的建议。
研究团队与“你的风湿病”(Your Rheum)合作,这是一个英国年轻人咨询小组(年龄在11 - 24岁之间),成员被诊断患有风湿性疾病,有机会参与风湿病研究。在一次虚拟的“你的风湿病”会议上,八名年轻人(女性 = 7,男性 = 1,年龄范围12 - 24岁)参加了小组讨论,分享他们参与研究的经历和决策过程。使用了包括Mentimeter和Miro在内的在线工具来促进交流和分享想法。
大多数年轻人有作为研究参与者参与研究的经历( = 5)。综合得出的建议包括提高对一般研究的认识。年轻人讨论了对听取研究机会持开放态度;他们反映很少接触到这些邀请或了解当前的研究。诊所环境被强调为一个“良好且值得信赖”的招募领域——研究团队成员主动接触被认为是理想的,即使是他们之前从未见过的人。许多年轻人回忆说在他们的临床预约中很少讨论研究。决定参与研究包括以下考虑因素:益处/影响;与他人建立联系;研究主题;然后再与便利性和报酬进行权衡。年轻人认为参与研究赋予了他们权力,并帮助他们掌控自己的疼痛管理。
了解潜在研究参与者的观点对于规划成功的招募策略至关重要。在设计我们的研究和招募策略时确保考虑这些因素对所有相关方都有益。共同制定的招募策略将有助于实现包容性(并增加)的研究参与。