Taylor Rachel M, Whelan Jeremy S, Gibson Faith, Morgan Sue, Fern Lorna A
1Cancer Division, University College London Hospitals NHS Foundation Trust, London, UK.
2School of Health Sciences, Faculty of Health and Medical Sciences, University of Surrey, Guildford, Surrey GU2 7XH UK.
Res Involv Engagem. 2018 Dec 27;4:50. doi: 10.1186/s40900-018-0135-x. eCollection 2018.
Young people with cancer are often described as 'hard to reach', 'difficult to engage' and/or 'vulnerable'. Consequently, they are often over looked for patient and public involvement activities. We set out to involve young people with cancer to work as co-researchers in the design of the largest ever study of young people with cancer, called BRIGHTLIGHT. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people as co-researchers, collaborators, consultants and dissemination partners. We chronicle the key points of this 10-year journey, sharing our success, describing our challenges and the solutions we put in place; sharing also what worked and did not work. Here we share some of these experiences of involving young people in this research and offer some practical advice for those looking to do the same.
Young people with cancer, broadly those aged 13-24 years at diagnosis, warrant special attention; physiological and psychological growth creates complex psychosocial needs which neither adult nor child systems are suitably designed to deal with. Resulting from these needs, they are often described as 'vulnerable', 'hard to reach' and 'difficult to engage', and consequently are often over looked for patient and public involvement/engagement (PPIE) roles. In our study 'BRIGHTLIGHT', we set out to evaluate whether specialist care for young people adds value, ensuring young people were central to our PPIE activities. We believe that BRIGHTLIGHT is unique as a very large study of young people with cancer which has successfully overcome the challenges of including young people in the research process so we are confident that they have influenced every aspect of study design, conduct and dissemination. We chronicle a period of 10 years, over which we describe our approach and our methods to involving young people in PPIE activities in BRIGHTLIGHT. We describe the feasibility work, study set up, conduct and dissemination of our findings, and weave through our story of PPIE to illustrate its benefits. Through the narration of our experience we highlight significant points that both influenced and changed our direction of travel. We reflect on our experiences and offer some practical advice for those looking to do the same. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people. Their contributions have been isolated and mapped over a 10-year period. We begin at an early step of identifying what research questions to prioritize, we then plot PPIE activities for one of these research priorities, place of care, which evolved into BRIGHTLIGHT. We document steps along the way to evidence the impact of this involvement. Young people can make a valuable contribution to healthcare research given adequate support from the research team. Although some challenges exist, we propose that the benefits to young people, researchers and the study considerably outweigh these challenges and PPIE with young people should be integrated in all similar research studies.
患癌青少年常被描述为“难以接触到”“难以参与进来”和/或“易受伤害”。因此，他们在患者及公众参与活动中常常被忽视。我们着手让患癌青少年作为共同研究者参与有史以来规模最大的患癌青少年研究“BRIGHTLIGHT”的设计工作。自BRIGHTLIGHT可行性研究工作开展的10年来，我们已让1200多名青少年作为共同研究者、合作者、顾问和传播合作伙伴参与其中。我们记录了这10年历程的关键点，分享我们的成功经验，描述我们遇到的挑战以及我们采取的解决办法；也分享哪些做法有效，哪些无效。在此，我们分享让青少年参与这项研究的一些经验，并为那些希望做同样事情的人提供一些实用建议。
患癌青少年，大致指诊断时年龄在13至24岁的人群，值得特别关注；生理和心理的成长产生了复杂的社会心理需求，而成人及儿童体系都没有妥善设计来应对这些需求。由于这些需求，他们常被描述为“易受伤害”“难以接触到”“难以参与进来”，因此在患者及公众参与/介入（PPIE）角色方面常常被忽视。在我们的“BRIGHTLIGHT”研究中，我们着手评估为青少年提供的专科护理是否有附加价值，确保青少年在我们的PPIE活动中处于核心地位。我们认为BRIGHTLIGHT作为一项针对患癌青少年的大型研究是独一无二的，它成功克服了让青少年参与研究过程中的挑战，所以我们相信他们已对研究设计、实施和传播的各个方面产生了影响。我们记录了10年的时间，在此期间我们描述了让青少年参与BRIGHTLIGHT中PPIE活动的方法和途径。我们描述了可行性研究工作、研究的设立、实施以及研究结果的传播，并在我们的PPIE故事中穿插说明其益处。通过讲述我们的经历，我们突出了那些影响并改变我们前行方向的要点。我们反思我们的经历，并为那些希望做同样事情的人提供一些实用建议。自BRIGHTLIGHT可行性研究工作开始的10年里，我们已让1200多名青少年参与其中。他们的贡献在10年期间得到了梳理和记录。我们从确定优先考虑哪些研究问题的早期步骤开始，然后为其中一个研究重点——护理地点，规划PPIE活动，该活动后来演变成了BRIGHTLIGHT。我们记录了一路走来的各个步骤，以证明这种参与所产生的影响。只要研究团队给予足够支持，青少年就能为医疗保健研究做出宝贵贡献。尽管存在一些挑战，但我们认为对青少年、研究人员和研究而言，益处远远超过这些挑战，并且让青少年参与PPIE应该融入所有类似的研究中。
