Image Alt

Ethical Research Involving Children

“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.

Brady, L-M., Miller, J., Mcfarlane-Rose, E., Noor, J., Noor, R., Dahlmann-Noor, A. (2022). “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. Preprint on Research Square.

Abstract:
Background
Children and young people’s (CYP) involvement is an increasing priority in 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 Moorelds Eye Hospital, London.

Methods
A team of young evaluators, supported by the eyeYPAG facilitator, conducted focus groups and online surveys with young group members, their parents and carers, researchers, group facilitators and funders. Qualitative data was analysed using a collaborative reexive 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 condence. Learning was a two-way process, with both researchers and facilitators reecting 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 identied as something that the group was ‘working towards’, including through this evaluation. Co- producing with CYP involves building up knowledge, condence and acknowledging power dynamics.

Conclusions:
Co-producing an evaluation enabled us to learn about the benets 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.

Publisher’s Link

Post a Comment