The Importance of Young Voices in Mental Health Research and Beyond
There are many stories I’ve held in my head and heart when it comes to young people struggling with their mental health. From intentional overdoses, to first episodes of psychosis, to disordered eating. As a Trainee Psychiatrist and Mental Health Advocate, I am dedicated to finding solutions to improve the current mental health crisis that devastatingly exists within our youth.
As someone who struggled with their mental health in their early twenties, I share my lived experience of Clinical Depression publicly, in the hope of reducing the stigma and normalising what has been a taboo conversation for far too long. Ultimately, I tell my story as a doctor who has always dreamed of looking after other people’s minds, yet has struggled with her own, to make others feel less alone and dissolve the divide between US (Doctors) and THEM (Patients).
I am both a doctor and patient, and I am proud of that.
There need not be such a crude divide between the expertise of the service-providers and the service-users. Undoubtedly, clinical expertise is paramount in aiding the recovery of mental illness but let’s never overlook the power of lived experience. Experts by Experience, also known as Patient Champions, can be empowered to speak out and educate the healthcare workforce to better understand their experience with illness and improve therapeutic relationships with their treating teams.
With this, it should come as no surprise that I attribute high value to the practice of co-production, whether used in charities, Mental Health Services or within research. I am honoured to be an ambassador for the CELEBRATE Project which incorporates co-production into its research.
For this project, I recently spoke as an ambassador on their panel at their event at King’s College London.
So, what is Co-production?
To me, it centres around bringing the ‘US’ and ‘Them’ closer together to benefit the system itself, those whom it cares for and those who work within it.
The National Co-production Advisory Group (NCAG) define co-production as:
“A way of working, where everybody works together on an equal basis to create a service or come to a decision which works for them all. It is built on the principle that those who use a service are best placed to design it.”
Co-production is underpinned by inclusivity and trust, it empowers service-users to have a voice and gives them an active role in improving the health service that they use. Through the lens of young people, this means that they can advocate for the changes that matter most to them, and that they would like to see. This is emphasised by the popular mantra within co-production: ‘nothing about us without us.’
The Social Prescribing Academy believe that the key principles of co-production are:
Developing trust and relationship building
Sharing power and decision-making
Make sure all voices are included, valued and listened to
Ensuring that there is something in it for everyone
Reflective and reflexive practice
So, when it comes to young people struggling with their mental health, what does co-production look like in practice? And how do we ensure young people who are involved in the research are seen as tokenistic?
Young people’s involvement in mental health research is invaluable. It benefits the research, the young people themselves, and has a ripple effect on their communities and future generations to come.
Let’s take a look at some case-studies using co-production:
The Celebrate Project
Professor Paola Dazzan is the Principal Investigator of CELEBRATE, which aims to ‘Co-produce a framework of guiding principles for Engaging representative and diverse cohorts of young peopLE in Biological ReseArch in menTal hEalth’.
The project is collaborative with contributions from researchers, young people, parents and teachers from London, Birmingham, and Bradford.
The purpose of the framework is to guide researchers doing biological research on mental health in adolescents. It is hoped that this will help overcome the barriers around getting young people involved in this kind of research, keeping them involved, allowing them to have active roles if they wish, and seeks to understand how else they can benefit from taking part.
Co-production is pivotal within the CELEBRATE project. Their Youth Expert Working Group (YEWG) is comprised of 10 Young People who share their views and perspectives. The group’s remit is to work alongside the research team to design and deliver a research project that is relevant and meets the needs of young people. The CELEBRATE YEWG's involvement is led by Niyah Campbell (researcher and Senior Public and Patient Involvement and Engagement Lead at the University of Birmingham).
I asked Niyah what the benefits of taking a co-production approach are:
"As a research team, we have benefitted extensively from working with the CELEBRATE YEWG. In each meeting, they bring perspectives and insights that add value to the project; be that validating or being critical of approaches. Their input has genuinely shaped many aspects of this project, proving to be a sterling example of the importance of involving young people in research".
D-CYPHR
Dr Anna Moore (Clinical Lecturer of Child Psychiatry at the University of Cambridge and Consultant Psychiatrist) is the Clinical Lead for D-CYPHR, a new programme which represents the DNA, children and young people’s health resource. It was launched by The National Institute for Health and Care Research (NIHR) BioResource in partnership with the NHS, Anna Freud, and the University of Cambridge.
Co-production is also essential towards D-CYPHR’s work, with parents and children both being actively involved.
Suzie, a mother and D-CYPHR participant, said: “I saw my daughter Sophie's journey from a very unwell newborn with significant health challenges, to a vibrant and active 7-year-old, enjoying life to the fullest. D-CYPHR is an opportunity for us to support research that might give answers to other parents in our situation, as well as create better treatments for millions of people.”
D-CYPHR is open to any young person aged 0-15 in the UK. With parental consent, they donate a saliva sample and answer a health and lifestyle questionnaire. This is crucial in launching new treatments for all health conditions that affect young people, from genetic conditions, to metabolic health (how the body processes food), to mental health, and everything else in between.
Professor Lucy Chappell, Chief Executive of the NIHR commented: “We want to ensure that our children and young people can access the power of genetics to transform diagnosis and treatment through this research. Children and young people have shaped this work throughout, and by encouraging interest and involvement in the research process, we hope to inspire the next generation as participants and scientists."
Through my own work with Nutritank, which focuses on nutrition education within healthcare and my mental health advocacy work, I’m honoured to also have been invited to become an ambassador for the D-CYPHR programme (see post).
“It is the biggest health initiative of its kind in this country and a world first-a new national childhood DNA health resource for research from birth through adolescence.”
Comics Youth, Liverpool
Comics Youth (CY) CIC is a youth-led organisation focused on delivering comics-based literacy, publishing, and social prescription projects to young people aged 8 – 25 who experience marginalisation and are on the waiting list for Child & Adolescent Mental Health Services (CAMHS). They are partly funded by the Youth Mental Health grant-giving charity Chimo Trust, for which I am a trustee. Their mission is to provide a voice for hard-to-reach young people including but not limited to: global majority youth, looked after children, LGBTQIA, neurodiverse youth, young carers, and young people experiencing mental ill-health.
Comics Youth provides their service-users with the tools for self-expression and improved mental health through creating and publishing comics about lived experience-led issues. Co-production is at the core of their work, as they support young people to take ownership of their narratives and lived experiences through social action and creative comics therapy, which is used as an innovative tool to spark change in the young people’s life course.
I asked Rhiannon Mair Griffiths MBE (Co-founder & Managing Director of Comics Youth) what the benefits of taking a Co-production approach are:
"Co-production enables trust to foster mutual respect and shared ownership, and helps us reshape services to be more person-centered, inclusive, and at higher quality for the young people we serve. We truly believe that young people’s voices and experiences need to be at the forefront in developing and delivering our workshops, to ensure they are culturally relevant and offer alternative solutions for young people who struggle to access ‘mainstream’ mental health services like CAMHS. Our programmes are aimed to provide wraparound support for young people who struggle within key transition points when mental health can be impacted. By providing young people with a supportive and preventative intervention at these stages, we seek to equip them with a diverse range of arts-based coping strategies and solutions, that ultimately increase their ability to adapt and remain resilient during uncertainty and change. Whilst our inclusive programmes offer universal support, we are deeply committed to reaching and engaging the most marginalised young people who face barriers in accessing mental health support, often for reasons beyond their control. Ultimately, no one knows better than a young person who has faced such heightened barriers, how they’d like to be supported.”
As demonstrated by the several case-studies, whether national research projects or charitable organisations, co-production is invaluable when it comes to improving youth mental health. It provides opportunity for service-users to contribute to the design of the mental health treatment and services that they intersect with. It leads to durability and sustainability of services, as it ensures that the systems or treatments are person-centered, so will work more effectively for the people they are created to support.
Ultimately, it allows for young people to feel valued, appreciated and gives them purpose from their pain, and empowers them to turn their struggle into strength to help not only themselves, but many others to come.