Care-Experienced Young People Shaping Mental Health Research
- Havovi Khareghat
- 1 day ago
- 5 min read
This piece was written by researchers at University College London (Havovi Khareghat and Eva Sprecher) and lived-experience advisors (Clo H, Valerie, Ace Garmodon & Alfie-James Waring) from the ReThink programme.
ReThink is a UKRI-funded research project that explored what makes a difference to the mental health of care-experienced young people (who have grown up in ‘state care’ e.g., foster care or children’s homes) moving through early and late adolescence. Lived-experience advisors shaped ReThink’s study design, data collection, understanding findings and how findings are shared.
Co-production (where professionals and people with lived experience work together) has become more common, and is expected as the norm by funders and research bodies. Therefore, we must keep reflecting on why co-production is important, and any facilitators and barriers to avoid co-production simply becoming a ‘tick box’ exercise.
As the ReThink project comes to an end, we hear directly from care-experienced young people about why involvement in research matters.
1. Why Is It Important for Care-Experienced Young People to Be Involved In Shaping Mental Health Research?
Young people are experts in their own lives and can offer insights that adults overlook. As Clo explained:
We’ve been through the experience, so we know what works and doesn’t work. Our views must be taken into consideration.
Valerie added:
In a way, it also allows the inner child voices of care-experienced consultants to be heard, which validates past experiences.
Alfie emphasised how young people’s perspectives can humanise care-experienced young people, who are too often reduced to statistics:
It gives a human voice to an often-robotic data survey. It is so important because young people give data and numbers a human touch. They remind the government and others that we are people, we are humans. For some years, the things that went wrong were not heard. But this project gives my experience a space to exist and be heard, and validation to be felt. It means my entire childhood has had a purpose. And every time we make a small change, I get a little bit of justice back.
2. What Are the Barriers to Care-Experienced Young People Shaping Mental Health Research?
Getting involved in shaping mental health research isn’t always straightforward for care-experienced people. As Valerie explained:
The barriers are researchers even wanting to work with care-experienced young people. Some researchers may not acknowledge or understand the benefits of including care-experienced young people.
To which Ace added:
Another thing is open opportunity, I personally had to really dig for opportunities, and when I was in care especially, it was difficult to get care staff/social workers to agree to the opportunities, even when I was 16 and 17.
Clo pointed out practical barriers which disproportionately affect care-experienced young people:
No internet access or devices to join online meetings. If we can’t access these things, we can’t share our views or experiences. Other issues, like placement instability [moving home, caregiver or residence], can result in no stability and no safe place to take part. Age also plays a role in this, as when you hit 18, you’re often left to fend for yourself, so you’ve got to balance everything, which may result in not taking part in things.
Valerie also spoke about more internal barriers that young people face, like the difficulty in having the safe space necessary when taking part:
Accessing care-experienced consultants may be difficult, due to fear of re-traumatisation. Mental health discussions can be traumatising for care-experienced young people, therefore, there needs to be a way to establish safety for young people to share. This can be emotional safety and environmental safety. There is also hopelessness. You can incorporate care-experienced young people to shape research, but there is no guarantee that anything will be done with this information. Hopelessness is a barrier because what is the point of trying if it changes nothing?
Clo agreed, explaining:
You may have to relive the trauma in your mind to take part, and many people won’t be able to cope with that. You have to feel like you can fully trust those leading the research as well, because sharing your story is a huge thing to do.
3. What Can Help Care-Experienced Young People Get Involved in Shaping Research?
Although barriers remain widespread, researchers, trusted adults, and policy change can all play a role in helping young people overcome these challenges and become meaningfully involved in shaping research.
Alfie told us the small yet impactful adjustments that could be made for young people, which go a long way in not only being involved, but staying involved. She listed several useful tips:
Being told about opportunities ahead of time, with a reminder a few days before, using clear and accessible language, offering different ways to take part (e.g. Online, in person, questionnaires or writing email responses), providing emotional support for difficult conversations, starting by building trust.
She mentioned the value in being involved in the final product of research:
Seeing or hearing how our views will make a difference or have made a difference will also encourage young people to keep coming back as it puts value in our voice and shows we can make an impact.
Ace told us the difference it could make when local authorities and community organisations are involved and how encouraging them to use their networks and tools to involve young people influences awareness of such opportunities:
Another thing would be pushing local authorities to properly reach out to young people in their care, as from my experience local authorities tend to be very reluctant to do big pushes for opportunities like Rethink, sadly. Another way to help young people to get involved is by reaching out directly to care-providing services [e.g., charities], so they can push for young people in their care to take part.
4. Do You Have Any Reflections You'd Like to Share About What It Was Like to Be Part of Designing, Shaping Or Sharing What We Learnt From A Mental Health Research Project Like ReThink?
ReThink wouldn’t be what it is without the brilliant, impactful and essential input and perspectives of the young people involved. We asked our young advisors for any final thoughts, reflections, and feedback they had on the project, and for the future of research with care-experienced young people.
Valerie said that she enjoyed her time being involved in ReThink, stating:
It was also very validating seeing personal experiences being reflected in young people currently in the care system. Though sad that the same issues seem to be recurring despite leaving care many years ago. It also felt like my energy was focused somewhere that could do some good for current and future young people in the care system. I want to thank everyone involved for their time, patience and ears; it was refreshing to feel listened to, which was missing when I was a child.
As Clo added:
I was given plenty of opportunities to share my views without feeling pressured. It was so nice to be able to share my views and experiences in a safe space without the fear of judgement.
