Creating spaces for young people’s voices in mental health research
Creating spaces for children and young people’s voices in mental health research and services during a pandemic.This time last year, alongside Samaritans, we were in the process of setting up workshops to involve young people in co-producing and developing guidelines for having safe online conversations about suicide and self-harm. We planned to host them at the end of March 2020, bringing together groups of young people who were experts by experience in a safe, facilitated space. The pandemic hit and abruptly those kinds of spaces, the community centres and school halls, the places we could bring groups together and talk about difficult topics, with a cup of tea and a friendly face, they were gone. Children and young people have been pushed by the pandemic out of the spaces we are accustomed to seeing them.
Suddenly, we were faced with the challenge of engaging young people safely and remotely. As researchers we had an important part to play in balancing the autonomy and agency of young people choosing to participate in our project with the potential that engaging them in remote and online spaces might be distressing. Children and young people have the right to express themselves, to be taken seriously, to join groups and meet others. By including children and young people in research we can ensure that they are actively involved in issues affecting their own and their peers’ lives. But moving these comfortable and familiar ways of engaging with young people into an online space required a careful and cautious approach, making sure not to add an unnecessary burden on those already dealing with a global pandemic.
Our project had to evolve, and this meant so did the processes we used. There were extra steps that we needed to put in place to make sure that the children and young people we worked with felt safe and supported.
We needed to create new spaces for them to have a voice.
Step 1: Collaborate
We involved young people with lived experience in the design and development of the project so that what we did and how we did it was approved from the start by the people we wanted to include. This advisory process helped us understand the best ways to describe what we were doing and the best ways to show those taking part what we wanted them to do. We worked closely with our partners, with online facilitators like mHabitat, national organisations like Samaritans as well as user-led services also facing the move to online delivery like Harmless, to make sure that we shared our learning and utilised our existing knowledge. Collectively, we agreed a process for our project to provide meaningful, safe and supported involvement. We are not the only ones who have been working in collaboration with experts to make certain that young voices are heard and represented. Kooth have been exploring the experiences of vulnerable young people throughout the pandemic and have worked closely with practitioners and Leaders Unlocked to ensure that young people have been able remotely to guide, inform and help to interpret that research.
Step 2: Communicate and Prepare
These collaborations, especially with young people, have highlighted the importance of preparation when engaging them in new ways. We introduced more contact with participants before and after conducting interviews and focus groups, taking some extra time to build connections and understand needs, making sure to check in on their wellbeing and helping to guide their use of the different technologies they would need to use. We learned that we need to be clear, concise and to stop wasting their time. Turns out that it is a lot easier for young people to “vote with their feet” when they just have to click a button!
Step 3: Engage and Involve
MindTech are experts in digital mental health and we know that there are evidence-based treatments available online, on smartphones and even in virtual reality that can help to tackle some of the challenges we will face in the years to come e.g. they can increase access to treatments by delivering them in people’s homes. However, encouraging children and young people to engage with digital mental health treatments can be challenging. We know from working with our industry partners that involving children and young people, alongside other stakeholders, is key to ensuring that these interventions are not just effective but also usable. We are not alone in finding new ways to engage and involve young people in the development, evaluation and adoption of digital mental health technologies. Existing groups like CAMHS.Digital and Nottingham University Hospitals NHS Trust, Research and Innovation, Young Persons Advisory Group (YPAG) have successfully developed ways to engage with their young people using online methods, extending involvement safely and securely into new spaces. Here at the University of Nottingham, Dr Elvira Perez Vallejos is also working on participatory methods to bring together Youth Juries through reaching out to young people, assessing how and when they would like to engage with researchers and making that happen.
So, what we have learned along the way about creating new spaces to connect with young people? Online groups might not always be the best way to bring people together, but we can make these spaces feel safe and supportive, designing and adapting them so that they provide an opportunity to amplify the voices of children and young people both on and offline.
"It may be challenging and expensive to involve children and young people in shaping their mental health services and treatments, but not even a global pandemic should stop us doing so."
Many of the groups and organisations we have showcased here have come together to form a Special Interest Research Group for Young People’s involvement in Digital Mental Health (YPiiDMH) supported by Emerging Minds. With this group we hope to share best practice and resources as well as bring stakeholders together in spaces where children and young people can share their expertise and knowledge about the issues important to them.
If you would like to join us please contact us at YPiiDMH@nottingham.ac.uk
NIHR MindTech MedTech Co-operative
NIHR MindTech MedTech Co-operative is a national centre focusing on the development, adoption and evaluation of new technologies for mental healthcare and dementia. It was established in 2013 and is funded by the National Institute for Healthcare Research (NIHR). MindTech, hosted by the Institute of Mental Health, brings together healthcare professionals, researchers, industry and the public. To find out more visit www.mindtech.org.uk
The Institute of Mental Health is located on the University of Nottingham Innovation Park and is a partnership between the University of Nottingham and Nottinghamshire Healthcare NHS Foundation Trust. To find out more visit www.institutemh.org.uk
Dr Aislinn Bergin and Dr Joanna Lockwood are both Research Fellows at NIHR MindTech Mental Health MedTech Co-operative, a national centre focused on the development, evaluation and adoption of new technologies for mental healthcare.