“We know that our voices are valued, and that people are actually going to listen”: co-producing an evaluation of a young people’s research advisory group

Abstract

Background Children and young people’s (CYP) involvement is an increasing priority in UK healthcare and in heath research, alongside recognition that involving CYP in research requires different considerations to involving adults. Underpinned by children’s rights and a co-production ethos this paper, co-authored with young evaluators, explores the learning from a co-produced evaluation of eyeYPAG, a young persons’ research advisory group (YPAG) for eye and vision research based at Moorfields Eye Hospital, London, UK. Methods A team of young evaluators, supported by the eyeYPAG facilitator, conducted focus groups and online surveys with YPAG members, their parents and carers, researchers, group facilitators and funders. Qualitative data was analysed using a collaborative reflexive thematic analysis approach. Quantitative data, limited by the small number of participants, was analysed in Excel and reported as descriptive data. Results CYP valued the social and creative aspects of the group as well as learning about research and developing skills and confidence. Learning was a two-way process, with both researchers and facilitators reflecting on how much they had learnt from working with the YPAG. All participants talked about the importance of impact, feeling that CYP are making a difference to research, as well as CYP’s right to be involved. Effective planning and facilitation were key to the success of the group, in relation to accessibility and the development and delivery of sessions both online and in-person. Resourcing and administration were key challenges to this, as was engaging researchers who were not already converted to the public involvement cause. As the nature of a YPAG is that it primarily focuses on advising researcher-led projects, co-production was identified as something that the group was ‘working towards’, including through this evaluation. Co-producing with CYP involves building up knowledge, confidence and acknowledging power dynamics. Conclusions Co-producing an evaluation enabled us to learn about the benefits and challenges of involving CYP in research, as well as how to involve them in the development of that evidence. An ethos of co-production and children’s rights helped to shift the balance of power and develop more engaging and inclusive ways of working.

Ready, set, co(produce): a co-operative inquiry into co-producing research to explore adolescent health and wellbeing in the Born in Bradford Age of Wonder project

“…gaining confidence, gaining communication skills, collaboration skills). Similar findings have been reported elsewhere [ 26 , 28 , 30 , 31 ] and highlight how co-production can positively impact projects, but also facilitate technical and soft skill development for peer researchers.…”

“…In terms of co-producing research with young people, key challenges for facilitators may include (1) managing their time in order to recruit and train co-production group members [ 27 ], (2) managing the additional administrative workload associated with group development and maintenance [ 28 ], (3) training peer researchers without over-professionalising them [ 29 , 30 ], (4) developing and maintaining long-term relationships with group members and minimising dropout [ 20 , 31 ], (5) learning effective facilitator skills and making content accessible and engaging [ 28 ], (6) managing differing expectations, viewpoints and/or timelines across research and co-production groups [ 28 ], (7) having flexible working hours (i.e. evening/weekend sessions), (8) acting as a gatekeeper for co-production groups, (9) safeguarding young people and protecting them from harm [ 30 , 32 ].…”

“…For project leads, key challenges of embedding co-production effectively may include (1) allocating sufficient time and budget to enable effective co-production [ 27 ], and (2) ensuring smooth succession plans if facilitators change or leave roles [ 28 ]. For peer researchers, particularly young people, some barriers to active involvement may include researchers’ overuse of academic jargon, timing conflicts with school and/or after-school clubs, and a relative lack of control in their own participation [ 26 ].…”

Radiation Reveal: Moving from research engagement to involvement

“…Since this project, all researchers have continued in other involvement and engagement projects, some of these with young adults from Radiation Reveal. By making use of peoples’ knowledge, lived experience, and networks, public involvement helps make research more relevant to the end-users and ultimately leads to better services, treatments, and care [ 9 ]. The value and benefits of public and patient involvement in research have been well documented but there can be challenges both in recruiting younger participants and moving towards involving patients, particularly around lab-based research.…”

‘Including us, talking to us and creating a safe environment’—Youth patient and public involvement and the Walking In ScHools (WISH) Study: Lessons learned

“…Co‐production is ‘an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge’ 61 . To move the consultative PPI activity outlined in this manuscript towards co‐production, young people could be involved in setting priorities for research, data collection and analysis, developing tools and/or working collaboratively on study outputs 30,62 . In recent years, there has been growing interest in co‐production and these methods can enhance the effectiveness of an intervention by considering the perceived needs of the end user and the context within which an intervention will be delivered 63 .…”