CO-PRODUCING A FRAMEWORK OF GUIDING PRINCIPLES FOR ENGAGING REPRESENTATIVE AND DIVERSE COHORTS OF YOUNG PEOPLE IN BIOLOGICAL RESEARCH IN MENTAL HEALTH
Lead Research Organisation:
King's College London
Abstract
Adolescence is a crucial time when the whole body, including the brain, is growing and developing, and when many mental health problems, like anxiety and depression, start. We already know quite a lot about how the environment can affect mental health, but we need to find out more about how the things we experience in the world can make physical changes to the biology of our mind, brain and body. Researchers can do this by studying, for example blood, saliva or brain scans (taking pictures of the brain).
THE NEED WE WANT TO ADDRESS: Biological research in adolescent mental health conducted so far needs improving, as many young people do not participate or drop out of such studies, especially young people from disadvantaged or minority groups, which means that results do not represent all the young people in the UK. This happens for many reasons, including adults (parents, carers, teachers, health professionals) sometimes assuming young people are not interested or have fears about taking part. Also, even if young people are invited to advise on research studies, this happens too late, once a lot of decisions have been already made.
WHAT WE WILL DO: This 2-year project is co-led by researchers and young people from 3 different UK locations (London, Birmingham and Bradford), which are very diverse in terms of population ethnicities, backgrounds and geography. Each location has groups of young people expert in advising researchers, and we have worked with them for many years. Together, we will develop a tool, called a "Framework of Guiding Principles", a document that tells researchers interested in studying biology and mental health in young people how young people prefer to be approached about research, what would make them interested to stay involved, what roles they would like to play in the research team, and what benefits they would like to see from taking part. We will also ask parents and teachers for their perspectives, as they often make decisions for young people under 18 years.
HOW WE WILL INVOLVE YOUNG PEOPLE: During every stage of the project, young people will be co-leaders, researchers, and active participants. Representatives from the expert young people groups will co-manage the project by forming a Youth Expert Working Group (YEWG) and by being co-chair and members of the Project Management Group, which makes key decisions about the project.
THE TASKS (WORK-PACKAGES, WP) OF THE PROJECT: Young people will co-lead the Work-packages with researchers. First, we will look at what works and does not work when researchers have tried to collect biological data in young people (Scoping review, WP1). What we find out in WP1 will help get the views of young people, parents and teachers on biological research in mental health, using small-group discussions ('focus groups') (WP2). The findings will be discussed with the expert young people in small online workshops, where they will develop the content and recommendations for a first draft of the Framework (WP3). The draft will then be sent round to more young people, parents, teachers, research funders and researchers, seeking their opinions and comments through online meetings and email correspondence to produce a final version of the Framework (WP4). Finally, we will let researchers, stakeholders (those interested in the project) and the public know about the Framework and ensure is used by researchers, during the project and beyond.
THE OUTPUT: The Framework will be a publicly-available tool with guidelines on how to conduct better, more inclusive research to understand how the biology of the mind, the brain and the body interacts with the environment to influence mental health during adolescence.
THE NEED WE WANT TO ADDRESS: Biological research in adolescent mental health conducted so far needs improving, as many young people do not participate or drop out of such studies, especially young people from disadvantaged or minority groups, which means that results do not represent all the young people in the UK. This happens for many reasons, including adults (parents, carers, teachers, health professionals) sometimes assuming young people are not interested or have fears about taking part. Also, even if young people are invited to advise on research studies, this happens too late, once a lot of decisions have been already made.
WHAT WE WILL DO: This 2-year project is co-led by researchers and young people from 3 different UK locations (London, Birmingham and Bradford), which are very diverse in terms of population ethnicities, backgrounds and geography. Each location has groups of young people expert in advising researchers, and we have worked with them for many years. Together, we will develop a tool, called a "Framework of Guiding Principles", a document that tells researchers interested in studying biology and mental health in young people how young people prefer to be approached about research, what would make them interested to stay involved, what roles they would like to play in the research team, and what benefits they would like to see from taking part. We will also ask parents and teachers for their perspectives, as they often make decisions for young people under 18 years.
HOW WE WILL INVOLVE YOUNG PEOPLE: During every stage of the project, young people will be co-leaders, researchers, and active participants. Representatives from the expert young people groups will co-manage the project by forming a Youth Expert Working Group (YEWG) and by being co-chair and members of the Project Management Group, which makes key decisions about the project.
THE TASKS (WORK-PACKAGES, WP) OF THE PROJECT: Young people will co-lead the Work-packages with researchers. First, we will look at what works and does not work when researchers have tried to collect biological data in young people (Scoping review, WP1). What we find out in WP1 will help get the views of young people, parents and teachers on biological research in mental health, using small-group discussions ('focus groups') (WP2). The findings will be discussed with the expert young people in small online workshops, where they will develop the content and recommendations for a first draft of the Framework (WP3). The draft will then be sent round to more young people, parents, teachers, research funders and researchers, seeking their opinions and comments through online meetings and email correspondence to produce a final version of the Framework (WP4). Finally, we will let researchers, stakeholders (those interested in the project) and the public know about the Framework and ensure is used by researchers, during the project and beyond.
THE OUTPUT: The Framework will be a publicly-available tool with guidelines on how to conduct better, more inclusive research to understand how the biology of the mind, the brain and the body interacts with the environment to influence mental health during adolescence.
Technical Summary
Existing adolescent cohorts are well-characterised in terms of psychosocial measures and mental health data, but lack an equivalent richness of biological measures, especially from ethnically and socio-economically diverse groups. In this two-year project, co-led and co-managed with young people, we will use a participatory approach with young people (11 to 18 years), teachers, parents, community health practitioners, key community advocates, UK funding bodies and academics involved in conducting biological research in adolescents, to co-produce a Framework of Guiding Principles as a tool that operationalises young people's and stakeholders' preferred approach for successfully engaging in biological research in mental health.
We will answer this question by addressing three main aims that will be delivered across five interlinked Work-packages (WP): Aim 1) Discover needs, barriers and facilitators, with a scoping review (WP1) and focus groups (WP2); Aim 2) Define and Develop the Framework, by co-producing, in iterative workshops with expert young people, a draft Framework (WP3); Aim 3) Deliver the Framework, by evaluating and finalising the final Framework through a Delphi consensus process with young people and key stakeholders (parents, teachers, community practitioners, key community advocates, funders and researchers) (WP4), and disseminate the resulting Framework to researchers and other end-users for initial implementation testing (WP5), including the preparation for immediate adoption by the Born in Bradford study, in their next wave of biological data collection in 2024.
This methodological tool will help researchers identify key questions to be addressed when presenting the study to young people, and how to successfully involve and engage this age group, their parents/carers and school staff in biological research in mental health.
We will answer this question by addressing three main aims that will be delivered across five interlinked Work-packages (WP): Aim 1) Discover needs, barriers and facilitators, with a scoping review (WP1) and focus groups (WP2); Aim 2) Define and Develop the Framework, by co-producing, in iterative workshops with expert young people, a draft Framework (WP3); Aim 3) Deliver the Framework, by evaluating and finalising the final Framework through a Delphi consensus process with young people and key stakeholders (parents, teachers, community practitioners, key community advocates, funders and researchers) (WP4), and disseminate the resulting Framework to researchers and other end-users for initial implementation testing (WP5), including the preparation for immediate adoption by the Born in Bradford study, in their next wave of biological data collection in 2024.
This methodological tool will help researchers identify key questions to be addressed when presenting the study to young people, and how to successfully involve and engage this age group, their parents/carers and school staff in biological research in mental health.
