Youth LIVES: Youth LIVed experience in Evidence Synthesis

Lead Research Organisation: University of York
Department Name: Centre for Reviews and Dissemination

Abstract

Our Approach

We will expand a highly regarded model of radical coproduction from citizen science (the Parenting Science Gang) into the priority area of youth mental health. We will demonstrate how innovative citizen science methods can change the way that people with lived experience inform evidence synthesis work. Distinct from the researcher-led, discrete contributions that have been common in synthesis to date, the project will adopt a youth-led approach. The setting for this will be the Cochrane Common Mental Disorders (CCMD) group, ensuring direct impact through embedding the method directly into an evidence synthesis organisation, and providing an avenue for spreading successful learning across the global Cochrane review group network.
Our approach will be to facilitate partnership working between youth citizen scientists and academics, supporting both groups to work together to produce meaningful and high-quality research outputs. We will draw across our expertise of citizen science, participatory codesign, and patient and public involvement in research to facilitate meaningful coproduction.
We will work with our partners, the Mental Health Foundation and Leaders Unlocked, to ensure an inclusive approach involving diverse groups of young people with mental health needs, to share learning across sectors, and to communicate learning across policy and charity networks.


The challenge

Evidence synthesis is the bedrock of evidence-based medicine, performing a key role both in compelling changes to policy and practice and in steering future research. To date however the input of those with lived experience to evidence synthesis has been limited. As well as restricting the contributions of those with lived experience, this also limits the relevance, validity and credibility of the reviews produced.

Young people can be particularly neglected as lived experience contributiors, due to assumptions that they have less capacity to understand and influence research. Sharing power and responsibility in research can be particularly challenging for researchers when young people are involved. We will actively facilitate partnerships between young people and academics, supporting both groups to work constructively together and recognise their complementary expertise. We will support them to use participatory codesign methods that privilege lived experience knowledge and encourage more accessible and collective ways of working (for example using visual or narrative materials).

Work Packages:
WP1 (6 months): Recruitment of youth citizen scientists and Mental Health Expert Q&A to raise young peoples' awareness and understanding.
WP2 (6 months): Formation of Youth Research Teams to prioritise their own research questions. Rapid review of the questions to filter the questions to WP3, 4 or 5.
WP3-5 run concurrently for 12-18 months:
WP3 Discover - Teams and researchers from UoY mental health research networks collaboratively design primary research to address an evidence gap.
WP4 Understand - Teams and researchers in CCMD collaboratively update or generate new evidence reviews to understand what is known and what recommendations can be made both for practice and for future research.
WP5 Communicate - Teams and researcher authors of existing evidence reviews in CCMD collaboratively design a youth-focused dissemination strategy and produce new knowledge mobilisation outputs to better communicate the research findings.
WP6: Evaluation (36 months, running throughout)- formative and summative evaluation, guided by Theory of Change, to assess impacts, capture barriers and facilitators, and generate new citizen science learning to inform future research and practice.
WP7: Spread & Sustain (final six months): Distributing resources to share best practice and build capacity for citizen science amongst early career researchers at York and across the global Cochrane network.

Technical Summary

There is a recognised coproduction gap in evidence synthesis, particularly for young people, with only two published accounts of youth involvement in systematic reviews, in both cases limited to consultation on existing reviews chosen by academics.

We aim to attract young people with lived experience of mental health problems aged 14-21, to acknowledge the diversity of experience across this age range, and ensure we develop science capacity at different levels (school-age, college, young adult). Previous work on a self-harm review work attracted 21 young people, demonstrating an interest in such research and the feasibility of recruiting interested young people. We are aware of the need for participatory research to reach the most vulnerable groups (for example, ethnic minorities or young carers). However, establishing subgroups to recruit to felt contrary to the emergent, user-led approach of the work, and could neglect that young people have several overlapping identities. We will instead commit to establishing a cohort of young people with diverse backgrounds and experiences, and evaluate and respond to progress toward this goal throughout the recruitment phase. Both Mental Health Foundation and Leaders Unlocked have particular expertise in reaching such groups. Online working (which could be via Facebook as in Parenting Science Gang, but we will be led by the preferences of the young people) will increase accessibility. Young people struggling with digital access will be able to request funds for equipment or data plans.

Key to recruitment will be communicating the benefits of the work for the young people themselves. This will include enhanced knowledge, skill development opportunities, greater confidence to work with peers and adults, and greater optimism about their own health. We will emphasise the flexible nature of the work, with individuals choosing which Teams to join and the level of commitment appropriate for them.

Publications

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