Involving young people in mental health research: A young person’s perspective
19 September 2024
Sally is a member of our Young People’s Advisory Group (YPAG). Here she talks about advising on a study looking at involving young people in research about their mental health.
Hi, I’m Sally, and I have been involved in YPAG for around six years. I was initially exposed to YPAG at IntoUniversity, which was an enrichment that helped students with their homework. YPAG representatives came in person and spoke to us about getting involved in studies and providing our input.
I was in year 7 and was dumbfounded that I really had the opportunity to share my ideas about a study and participate in a Zoom call with professionals. It made me feel valued, empowered, and most importantly, heard.
I was involved in Zoom calls about mental health issues, eating disorders, sleep cycles, and topics as simple as homework. I guess the prospect of getting paid was also appealing.
We participated in calls with people of a range of ages. I was definitely not the youngest. What we all had in common was the desire to make a change, to have our voices heard, and to let others know that these changes would affect us, too. Why live in a world where you watch the action happen from the sidelines? This action will affect you as well.
This is where the study, led by researchers at UCL, ‘Understanding and Defining Young People’s Involvement and Under-Representation in Mental Health Research’ comes in.
The study specifically addressed the issue that important subjects about young people often don’t include them. It’s like parents making decisions for you while you remain in the background, fully aware of your perspective. I feel like most studies about young people’s mental health disregard young people’s contributions completely. Sure, it’s a study about us, but we provided zero input.
Some studies state that “young people were involved in this study,” but they really mean that young people were participants in a study. They weren’t given the opportunity to share their ideas—ideas that could help them and others facing similar challenges.
The term ‘involvement’ has an ambiguous meaning. The study gave me and other young people the chance to represent people similar to us, highlighting issues that were previously kept in the dark.
Some minority groups are ignored completely. Their voices go unheard, and their problems remain unaddressed. When a subject as broad as mental health is researched, you’d think the researchers would delve into all the different demographics and how they are affected. Unfortunately, this is not always the case.
On the other hand, this study has given a voice to those young people from underrepresented backgrounds, who are often ignored in research that will affect them both now and in the future.
It is a known fact that mental health issues among young people are on the rise. This increase is due to several factors. The first is that young people aren’t directed to the appropriate support services.
Some young people suffering from mental health issues have reported that they have “waited literally years until they were seen by a therapist.” You can imagine that during their wait time, their mental health only deteriorated. They may not have been directed to appropriate support services because nobody recognised their suffering. Nobody was taking them seriously enough.
We, as a society, need to recognise that mental health issues exist on a broad spectrum, and everyone experiences problems in unique ways. The questions of “how severe is severe?” and “when should I seek help?” are critical areas that need to be explored. If studies on mental health give young people a chance to express their thoughts and ideas, some light can be shed on these questions.
Furthermore, evidence from young people from ethnic minorities shows that they have lower trust in health professionals. This acts as a barrier to them seeking help because they don’t know where to turn. Why do young people from ethnic minorities have lower trust in health professionals? Researchers should start asking young people in their studies to find out!
It is particularly challenging for young people from rural areas to access these services. These young people are also underrepresented, so their difficulties in accessing mental health services are an ongoing problem. If a study selects only young people from cities, the issues of inaccessible mental health services in rural areas may not be addressed. The needs of young people from rural areas are therefore ignored, which adds fuel to a fire of neglect. The issue of underrepresentation in mental health research must be addressed.
Another problem is that young men are not encouraged to speak about their mental health. Societal stigma surrounds mental health, particularly for young men who are often discouraged from expressing their feelings. They are forced to slap a plaster onto a gaping wound and move on. Studies about mental health should encourage these young men to talk about their mental health and address the stigma surrounding it.
Research shapes many aspects of our society, and it is vital for shaping mental health services. Moreover, all mental health research must be representative of all areas of society so that all young people feel heard and supported. Mental health is just as important as physical health, and this needs to be reiterated more.
Unfortunately, research doesn’t make the term ‘involvement’ clear, which can be disheartening for the young people involved. It’s like walking in the dark after being promised a torch. Involvement could mean terms such as co-creation, co-production, co-design, and co-research. These words are often used by researchers without real definitions of what they mean. This study aimed to address that.
Once a young person gets involved in the research, they may find themselves questioning what input they actually provided. This can make participation in mental health research less accessible and even discouraging.
Currently, researchers do an okay job of involving young people in mental health research. By “okay,” I mean they often underrepresent most minority groups and make involvement mostly inaccessible to many people, whether that be by not clearly stating how young people will be involved or simply not providing them the opportunity to engage. This needs to change!
What happens to young people who are from ethnic minority backgrounds, those who are disabled, those from lower socio-economic backgrounds, those who don’t have English as a first language, or those who are from immigrant, refugee, or asylum-seeking backgrounds? Will their voices still go unheard? Will we still hear their challenges echoing in the background as study after study is published.
If we improve our efforts to involve a broader diversity of young people, then diagnosis, treatment, and services will better serve a wider range of individuals.
