Reflections and Learnings from Professional Youth Advisors
This article was co-authored by Emily Bampton, Refiloe Sibisi, Swetha Ranganathan, and Shuranjeet Singh
The MindKind study asks whether it is possible to develop a Global Mental Health Databank that holds rich data from different parts of the world. Specifically, the databank looks to inform interventions for anxiety or depression in 14–24 year olds.
A range of expertise are required for this project to be a success. Within these perspectives, the knowledge of those with lived experiences of mental health challenges are integral. Those with lived experiences of mental health challenges can bring unique and much-needed insights in mental health research, and their roles are becoming increasingly popular in mainstream conversations and studies
In the MindKind study, Professional Youth Advisors (PYA) are leaders in facilitating lived experience and youth participation. Building on previous project reflections on the project, this article shares the perspectives of PYA working across the three global sites in South Africa, the United Kingdom, and India to consider the motivations of PYA and their involvement in the project, the key learnings they have taken from their roles, and paramount advice they have for those working with youth in mental health research.
We would like to thank the Professional Youth Advisors for sharing their insights here alongside their conscientious and sustained work in the project more widely. Thank you, Swetha Ranganathan (India), Refiloe Sibisi (South Africa) and Emily Bampton (United Kingdom).
What made you want to be involved with the Global Mental Health Databank Project?
Emily Bampton: The Global Mental Health Databank project stood out to me as an opportunity to work with other young people to effect change. Having had anxiety for most of my life and working full time in finance and admin since age 17, I felt like this project came at exactly the right time for me. I was looking to move into work I found rewarding and used my skills in communication. I am passionate about championing and advancing discussions in mental health, so this was a brilliant chance to centre youth voices and insights on a topic which has never been more relevant, especially in the context of the COVID-19 pandemic.
Refiloe Sibisi: I have a background in peer education for youth programmes which enabled me to realize the great potential impact youth-informed decisions within a project. The Global Mental Health Databank project stood out for me while I was looking for opportunities which aligned with my passion for creating safe spaces, advocating for social action, and implementing sustainable change. In October 2017, during my first year of university, I was diagnosed with a major depressive disorder. This experience made me realise that services for mental health are not easily accessible, enhancing my motivation and desire to be involved with the Global Mental Health Databank project.
Swetha Ranganathan: Growing up in India with anxiety, I was vulnerable and was unable to access the support that I would have benefitted from. I was drawn to the Global Mental Health Databank project primary because as an early career researcher in mental health, my focus of interest has always been around youth mental health. This stems from my personal lived experiences of dealing with mental health conditions. With the Global Mental Health Databank project, I have been able to represent the voices of young people from a low-middle income country and meaningfully integrate their feedback and insights to better inform decisions in future mental health research and policy making.
What are the key learnings you have taken since being involved with the project?
The key learnings outlined by Professional Youth Advisors have been collated into the key themes below which centre on forming functional and equitable youth-adult partnerships in the research setting.
(1) Collaboration
Youth involvement will not work unless everyone across a project understands, appreciates, and invests in its importance. Collaboration means ensuring that project teams are aware of one-another, our roles, and how we can work more closely together. With the Global Mental Health Databank project being widespread and globally facing, it is integral that collaboration between and within teams is conducted effectively and clearly. With youth, collaboration could mean exploring opportunities for capacity building focused on their growth. It could also mean adapting engagement styles to speak in a more accessible and reciprocal way to boost involvement activities. As the MindKind study spans three countries, it has also been important to ensure that youth involvement leads are connected across sites. For this project, we created a monthly meeting called the ‘Justice League’, where youth advisors from the project and Wellcome can connect, provide support to one another, and share learnings. These types of infrastructure are essential, especially on complex projects.
(2) Transparency
When co-designing research with young people it is absolutely imperative that a mechanism for transparent decision-making is in place. Young people should have knowledge on how decisions concerning them and the project are being made, if or how their feedback is being incorporated, and how to raise their concerns if they don’t feel their voices are being heard. Such transparency will benefit not only young people, but professional youth advisors such as ourselves and also other team members to understand the mechanics of projects, especially those which are internationally focused and highly complex.
(3) Representation
As the Global Mental Health Databank project has been conducted entirely virtually, it creates a huge barrier for representing the views of young people in low-middle income countries. Most young people in India do not have access to a smartphone or a device with internet, so many research study that aims to represent young people must facilitate the involvement of vulnerable and marginalised communities, say through the provision of data packs. We must reflect on what representation means within our projects, who is included and who is often unintentionally excluded.
(4) Safeguarding
Safeguarding and safety measures must always be kept in place to protect the well-being of young people with lived experiences of mental health challenges. It is important to ensure that anyone who works with youth are provided with capacity building opportunities, to hold and provide a listening ear to those they may work with requiring basic mental health support. Other safeguarding and safety measures could involve keeping a repository of mental health resources or even having a mental health professional youth have access to.
(5) Reflection
It is integral that youth involvement is evaluated and reflected upon throughout the project, especially by those who youth frequently interact with. The effectiveness and impact of youth user involvement won’t be measurable unless action is paired with reflection. In doing so, researchers can think about the impact of involvement on their knowledge and confidence, while youth can reflect upon what they have gained from involvement and whether it has supported their life trajectories. By embedding reflexivity, we can understand what works, how it works, and what needs improving, which will ideally improve youth involvement across mental health research.
What is a key piece of advice you would share with those working with youth in the field of mental health research?
Emily Bampton: Hire consultants to run or inform youth engagement! On the Global Mental Health Databank project we have been deeply involved with planning, delivering and evaluating youth involvement strategies. This role would not have been possible allocated between already busy researchers and academics, so it’s important to hire those whose role can be entirely dedicated to enhancing participation in research. The skills are out there, it’s just about researchers, projects, and studies showing the desire to invest in them!
Refiloe Sibisi: Working alongside youth with lived experiences of mental health challenges, especially within the field of mental health research, emphasises the importance of representation within a space from which lived experience has often been excluded. Within this, such representation has the potential to equalise the link between research and reality, hopefully improving the outcomes from research and the tangible impact on communities globally.
Swetha Ranganathan: Youth-adult partnerships in research have been known to increase methodological sensitivity, produce rich and valid results, as well as empower young people to act as agents of change. For organisations, it is necessary that youth are involved in all aspects of research, from conceptualisation to dissemination. Adequate opportunities to build capacity must be provided to both researchers and young people for sincere collaboration. These measures for youth could help them to understand research processes and properly express their insights. Similarly, for researchers, these measures could help them structure ways of working with youth to properly incorporate feedback.
As a co-author on this blog, I have been working with Swetha, Refiloe and Emily since they started on the project. This work has been a fantastic opportunity to learn, share, and grow together, and this article was a pleasure to plan and write whilst centring their experiences of youth involvement. The points listed above are applicable to all types of youth participation in mental health research and beyond.
If you want to learn more about youth involvement in mental health research, there are a range of articles on Young People’s Advisory Groups, co-production in mental health research, academic articles on topics like co-production and those which are more critical of the concept.
So, to end, we have three questions:
- How are you going to develop your knowledge and skills to advocate for involvement in your area?
- How are you going to commit to enhancing youth involvement in mental health research?
- How are we going to ensure that youth and lived experience involvement is central to how we conduct mental health research moving forwards?
You can read more about the MindKind Global Mental Health Databank Project here.
