Table 1

Examples of CYP involvement at different stages in the research pathway

Research stageCYP involvement and example(s)
Asking the right research questionCYP can be involved in the prioritisation of research topics and questions. Prioritisation exercises can take several forms, ranging from informal focus group discussions and questionnaires, through to more formal and structured processes, such as a James Lind Alliance Priority Setting Partnership.37
CYP’s beliefs about their research priorities for rheumatic conditions and whether and how young people would like to become involved in the research process were explored.38 Thirteen focus groups were undertaken with 63 CYP aged 11–24 years from all four devolved nations of the UK (England, Northern Ireland, Scotland and Wales). The results highlighted the importance of considering the spectrum of ages of CYP, as well as geographical diversity. The findings from this prioritisation work were used to inform the future research strategy of the Barbara Ansell National Network for Adolescent Rheumatology in the UK.39
Developing and planning a studyCYP can comment and advise on study protocols, including research questions, methodology, specific methods and research instruments used in the study, for example, consent and assent forms, participant information sheets and interview topic guides. In doing so, they are able to influence the design of the study so that it is more likely to be accessible and relevant to CYP.
As part of a feasibility study, face-to-face and telephone consultation exercises with CYP and families were undertaken prior to designing a trial of protocol‐based ventilator weaning. The aims of this exercise were to: (1) ascertain views on the relevance and importance of the trial; (2) determine the important outcome measures for CYP and families; and (3) ascertain views on informed consent in a cluster randomised controlled trial. The trial objectives were deemed important and relevant, and CYP and families considered the most important outcome measure to be the length of time on ventilation. CYP and families did not consider written informed consent to be a necessary requirement in the context of this trial, rather awareness of unit participation in the trial was important with the opportunity of opting out of data collection. This consultation provided useful, pragmatic insights to inform trial design.40
Research conduct and operationsCYP can be involved in the management and conduct of studies. This can take several forms, including as members of study/trial steering committees and advisory groups, through to CYP acting independently as coresearchers/peer researchers with management responsibilities.
As part of the Trials Engagement in Children and Adolescents (TRECA) study aiming to develop multimedia information (MMI) resources about research studies, CYP and families joined a Patient and Parent Advisory Group to play a key role in reviewing and providing input into various aspects of the study, including commenting on, and piloting documents to be used by participants. In addition, two members of the Patient and Parent Advisory Group also self-nominated themselves to join the TRECA Study Advisory Group alongside other academic and clinical professionals to provide strategic guidance for the overall study. These individuals were the liaison between the Study Advisory Group and the Patient and Parent Advisory Group.41
Data collection and analysisCYP can be involved in some, or all aspects of data collection and analysis. With regard to data collection, CYP can be involved in disseminating surveys to their peers, cofacilitating focus groups and conducting peer-to-peer interviews. With regard to data analysis, CYP may be involved in identifying and refining themes from qualitative data, commenting on quantitative analysis and how to portray these findings to CYP, and helping to draw conclusions to be exploited in future research. Appropriate training and support will be required for CYP for them to be able to conduct and analyse research in an appropriate manner. CYP may also be involved as researchers themselves, drawing on participatory action research methods.42–44
Barnardo’s Yorkshire Young People’s Research Group (The Originals) consisted of CYP trained as peer researchers. They collected data with CYP (aged 12–16) through questionnaires, drama, photography, observations and interviews at three research events. CYP split into two groups to analyse the questionnaires and interviews.45
Dissemination of study findingsCYP can play an integral role in the dissemination of study findings, ranging from contributing to press releases, website blogs and social media posts, through to coauthoring journal publications, funding reports and copresenting findings at conferences. CYP may have access to a wide range of contacts, based on their experience, and tend to be better suited to communicating information to their peers. In addition, CYP should be involved in reflecting on the impact of their involvement in the study, and the impact that their involvement has had on themselves.
As part of a study exploring the use of mobile apps to support self-management of long-term conditions, a young person was involved in conducting a systematic review.46 The young person submitted an abstract as presenting author for a large international conference,47 supported by academic and clinical colleagues. The young person and academic researcher also copresented findings from the study, and the partnership between CYP and researchers at a local Children’s Hospital Conference.48 Dissemination also extended beyond traditional publication strategies, and included the preparation of blog posts and social media announcements about the findings of the study and next steps in the research pathway.
  • CYP, children and young people.