How can we help researchers, funders and young people collaborate more meaningfully in mental health research? Over the past six months, we worked with Wellcome and UKRI to try and answer this question.
Meaningful collaboration with people with lived experience makes research better. It improves research outcomes, aligns research priorities with actual public needs, and creates a more inclusive and rewarding research culture. When it comes to mental health research, collaborating with young people is especially important given how significant early intervention is in improving mental health outcomes. We need young people’s input on what is researched, and how, so that we can advance knowledge and practice that reflects real experiences and responds to urgent needs. However, those interested in collaboration often encounter obstacles that make this work tricky, and when they go looking for solutions, they may struggle to find resources that can help them.
In this post, we share key challenges and barriers facing collaborators in mental health research, particularly young people, researchers, engagement specialists, and funders. We also review some of the existing resources currently available to overcome these challenges. Finally, we reflect on the types of resources out there and theorise how they respond to three distinct learning needs that collaborators have – needs which could be better supported through developing, assembling, and referring to appropriate types of resources.
In this post, we use the term collaboration to refer to working with and alongside people with lived experience in research. This is distinct from participation in research, where members of the public share data rather than expertise. Collaboration is a broad term covering many different ways researchers work with people who have lived experience, including, but not limited to, patient and public involvement (PPI), participatory research, and community engagement.
Any good resource in this space needs to tackle the factors that make research collaboration difficult. To identify and understand these, we spoke with over 30 stakeholders with different perspectives and experiences of collaboration. This included researchers with years of engagement expertise, youth mental health charity staff, early career researchers on international youth mental health collaborations, experienced engagement coordinators, funders of youth mental health organisations, and young people aged 15–29 years. We spoke with people from the UK and globally, including collaborators based in Australia, India, Kenya, South Africa, Uganda, the US, and Zimbabwe. Those we interviewed highlighted the following challenges and barriers preventing meaningful collaboration:
Recruitment & retention: Successfully reaching and recruiting a diverse range of young people to collaborate with can be difficult. Usually, collaborators are sourced through word of mouth or existing networks, making it harder for researchers to reach under-represented groups.
Legal & ethical barriers: Legal teams often don’t know how to treat young people under 18 as experts by experience rather than participants. Are they employed, or reimbursed? Plus, there is a need for parental consent, and this takes time and requires trust between researchers and families. Additionally, there is a lot of siloed working and lack of coordination between health trusts and universities when it comes to collaboration, so many are addressing the same administrative problems in slightly different ways.
Youth capacity: Arranging collaboration activities around a young person’s availability can be difficult, considering they can be at school or have exam schedules. Zoom meetings and other research environments may also be unfamiliar to young people, and they need time to adjust and gain the skills to contribute in these settings. Researchers need ways to meet young people where they are, rather than expect them to immediately adjust to academic ways of working, and young people need adequate support structures so that they can contribute to research to the best of their ability.
Lack of trusting relationships: Short project timelines mean that researchers don’t have much time to develop relationships with the young people they work with, and this limits the potential for meaningful collaborative work to take place. However, this is challenging when working with young people, as they age out fast. In addition, there can be a level of mistrust of researchers, especially amongst certain communities, and this prevents people from wanting to collaborate.
Jargon: Researchers need ways of translating complex scientific medical jargon into language that young people can understand and engage with. In addition, sometimes researchers can use medical terminology that young people don’t necessarily agree with and may feel strongly about, particularly in the domain of mental health.
Power dynamics: Power dynamics can be a barrier, both subtly and explicitly. For instance, when young people are at a meeting with researchers or funders, they may feel intimidated and this can affect how they contribute. There are also more practical challenges to work through: How much weight should be given to a young person’s views on a funding panel? What happens when young people disagree with researchers, and how should disagreements be settled when there are differing levels of expertise between them? Collaborators need to be trained in how to navigate these issues.
Inclusion & customisation: People from different groups have different needs, whether this is because they come from differing cultural backgrounds, have accessibility requirements for their mental health condition, or are within younger or older age ranges. Making adequate customisations is essential, but there is little guidance around how to do this.
Not valuing lived experience: Young people sense when researchers don’t ‘get it’, when it comes to valuing lived experience expertise. A tokenistic approach disadvantages both researcher and young person when trying to work together, because the collaboration remains surface-level and not meaningful.
Youth interest: Young people can have certain preferences or expectations for research they would like to be a part of, and researchers often find they struggle to match these expectations. Young people often want to do work that leads to immediate outcomes, however research isn’t always like this.
These challenges and barriers demonstrate how complex collaboration can become. With so many moving parts and differing needs to accommodate, many different resources are needed.
Defining a resource as anything which collaborators could turn to for help and guidance, through further research we discovered over 180 resources created to address such challenges and barriers to collaboration.
The resources we found cover a wide variety of formats and perspectives, originating from disparate sources representing distinct theories of collaboration in very different disciplinary, institutional, and population contexts. They include materials and tools in the form of blog posts, templates, and webinars, but also more relational resources such as networks of young people. They were developed by charities, consultancies, universities, funders, as well as individual researchers and young people. Some focus on collaboration within mental health research whereas others are geared toward research collaboration more broadly. Some address specific collaboration considerations at particular stages of the research process. Some are designed for public and patient involvement (PPI); others for community engagement. Some provide basic, foundational guidance, and some assume users are already somewhat experienced in collaboration so don’t refer to more basic principles or frameworks.
We also noticed clear gaps in the available resources. Most are aimed at researchers, while fewer are targeted at funders and young people. There is a conspicuous lack of materials developed specifically for research collaborators in low-resource settings or in specific social or cultural contexts globally. Furthermore, guidance tends to focus on certain challenges and barriers more than others. For example, we found that more general resources on power dynamics and valuing lived experience are relatively plentiful, whereas those on the practicalities of recruitment and retention, inclusion and customisation, and legal and ethical barriers are much rarer.
Overall, our analysis revealed that while many mental health research collaboration resources already exist, what’s currently available is heterogeneous and scattered widely. This can make it difficult for collaborators to locate and piece together what they need, when they need it so that they can ultimately formulate a meaningful collaboration approach backed by good practice.
One way to help research collaborators navigate the myriad resources on offer is to lead with their learning needs. Many people we spoke with shared strong testimonials for particular types of resources, whether theoretical frameworks, training and guidance, or stories of experience. We found that these endorsements generally reflected one of three distinct learning needs: the need to establish the right mindset, to refine methodologies, and to improve practice. Below, we describe each of these learning needs in more detail and give examples of resources which address them.
When people need to understand what good collaboration is and why it is done, they find it beneficial to look at theoretical frameworks, sets of principles and values, and opinion papers. These tools support a mindset shift toward understanding, valuing, and integrating meaningful involvement of people with lived experience in research. Theoretical frameworks can also provide a heuristic against which collaborators can check their proposed approach, and allow collaborators to position their approach in relation to other styles of working. For instance:
A funder wanting to recruit youth advisors might use a theoretical framework such as Roger Hart’s Ladder of Children’s Participation to understand the level at which collaboration may be useful to them and why.
Collaborators can read sets of principles and values, like those listed within the WHO’s meaningful engagement framework of people living with noncommunicable diseases and mental health conditions, to understand the foundations of how to work together.
Researchers can also read opinion papers, like this one on how to re-conceptualise authentic patient engagement roles in youth mental health research, to understand the relevant concepts and nuances which become present in this work.
When people need to design and carry out collaborative work, they find it useful to have clearly outlined instructions for how to attempt the many varied aspects of collaborative work. This includes planning research activities, fulfilling ethical and legal requirements, and making the appropriate changes to processes and activities when working with particular groups. Having detailed guidance means that collaborators can learn from best practice and incorporate these learnings into their methodology. For instance:
A young peer researcher may use a training course like King’s College London’s guide to community and peer research to learn how to effectively and ethically conduct research.
A researcher may use worksheets and templates such as those featured on Imperial’s Public Involvement Resource Hub to help simplify processes across the entirety of a collaborative research project.
Collaborators can benefit from toolkits and guides, like the Young and Well Cooperative Research Centre’s Enabling Participation guide, which offers procedures, recommendations and practical dos and don’ts for those wanting to collaborate with young people in research.
When people need advice on how to improve their collaborations, they often look to experiential knowledge sources to help inform their practice. By reading about others’ experiences in case studies or reflective articles, or speaking directly with peers in networks, collaborators can learn what works more and less well across collaboration contexts. They can use this information to craft solutions for project-specific problems and accumulate learnings to shape their holistic perspective over time. For instance:
A researcher may look to a case study, like this one, which describes learnings from co-producing a randomised-controlled trial, to understand the successes of a project and any other important considerations which they could take into their own work.
A young person may read another young person’s reflective blog post, like this one by Boing Boing youth advisors, to understand what to expect from working alongside researchers at an overseas research conference.
A funder may look at project evaluations like the Islington Giving Young Grantmakers evaluation to understand how a project went, the approach used, and the resulting impacts.
Finding the right resource at the right moment has the potential to critically impact the success of a mental health research collaboration. However, with such a wide variety of resources scattered across many locations, this doesn’t always happen. In addition to strengthening the resource offering, there is a need to make this space more navigable so that research collaborators can find resources that really help them.
Whether we are developing more resources, strengthening existing ones, or collecting them together in databases, toolkits, or other platforms, we should prioritise addressing the known challenges and barriers to collaboration. However, we should also consider collaborators’ distinct learning needs. Knowing whether a group of mental health research collaborators have greater interest in learning how to establish the right collaboration mindset, refine a collaboration methodology, or improve their collaborative practice can indicate which types of guidance will be most relevant for them – and which resources we should develop, gather, and share in order to better support meaningful collaboration.
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