Esen Ecem, Gnanenthiran Suruthi, Lunt Laura, McDonagh Janet E
, Manchester, UK.
Department of Chemical and Biological Engineering, University of Sheffield, Sheffield, UK.
BMC Rheumatol. 2022 Jul 5;6(1):43. doi: 10.1186/s41927-022-00273-z.
Until recently, young people too often fell into the gaps between services due to restrictive age criteria. Furthermore, their voice was too infrequently heard or was represented by proxies in the form of their caregivers or by adults recalling their youth. The lack of young person involvement in adolescent health research including the arena of paediatric and adolescent chronic disease has been highlighted in current literature. However, the involvement of young people at all stages of health research, from priority setting through to dissemination, is widely advocated. Furthermore, such involvement is considered to be important ethically and, most important of all, has been called for by young people themselves. Young people have clear views about research and these views potentially enhance our understanding of how young people form opinions about research. These opinions in turn informs researchers how to best engage young people (including recruitment and retention) in research. Such involvement of young people ensures that research questions, project methodologies and/or interventions are truly resonant with their lives. This paper describes the development of a national youth advisory group in UK rheumatology, an important addition to the evolving evidence base to support the involvement of young people in rheumatology research. The paper is written with two young people who are members of this group, providing them with an opportunity to learn more about a key component of research-writing papers for publication.
直到最近，由于年龄标准的限制，年轻人常常陷入服务的空白地带。此外，他们的声音很少被听到，或者由他们的照顾者以代理的形式代表，或者由回忆自己青春岁月的成年人代表。当前文献强调了年轻人在包括儿科和青少年慢性病领域在内的青少年健康研究中缺乏参与。然而，年轻人在健康研究的各个阶段，从确定优先事项到传播，都被广泛倡导参与其中。此外，这种参与在伦理上被认为是重要的，最重要的是，这是年轻人自己所呼吁的。年轻人对研究有明确的看法，这些看法可能会增进我们对年轻人如何形成对研究的看法的理解。反过来，这些看法也会告知研究人员如何最好地让年轻人参与研究（包括招募和留住他们）。年轻人的这种参与确保了研究问题、项目方法和/或干预措施与他们的生活真正共鸣。本文描述了英国风湿病学领域一个全国性青年咨询小组的发展情况，这是不断发展的证据基础中的一个重要补充，以支持年轻人参与风湿病学研究。这篇论文是与该小组的两名年轻成员共同撰写的，为他们提供了一个更多了解研究关键组成部分——撰写发表论文的机会。
