A qualitative study exploring the benefits of involving young people in mental health research

Abstract Introduction It is increasingly accepted that young people need to be centrally involved in research on issues that affect them. The aim of this study was to explore young people's perceptions of the benefits for them of being involved in mental health research and the processes that enabled these benefits. Methods Qualitative interviews were conducted by co‐researchers (young people with lived experience and/or interest in mental health) with 13 young people (aged 13–24 years) who had experience of being involved in mental health research when they were between 11 and 16 years of age. Reflective thematic analysis was used to identify important aspects of young people's experiences. Results Four main themes were identified: (1) opportunity to have a meaningful impact, (2) opportunity to be part of a supportive community, (3) opportunity to learn and grow and (4) increasing opportunities for young people. Conclusion This study highlights young people's experiences of being involved in mental health research and identifies ways in which researchers can ensure that involvement opportunities bring benefits to both the young people and the research. Patient or Public Contribution This research was a response to issues raised by young people involved in research. The project was supported by co‐researchers throughout, including design, data collection, analysis and write‐up.


| INTRODUCTION
Recent data from the NHS indicated that one in six children aged 5-16 years in England had a likely mental health difficulty in 2020. 1 Experiencing mental health difficulties during adolescence is associated with a range of poor health and educational outcomes. 2 There is a clear consensus that more research is needed to understand how best to prevent and address the high mental health need among adolescents. 3 Furthermore, it is increasingly accepted that young people need to be centrally involved in that research. 4 This push for greater involvement of young people in mental health research builds on research that demonstrates that studies that involve people with lived experience are more robust, more likely to achieve target recruitment and enhance the translation of findings into practice. 5 Therefore, involving young people in research may improve a study's acceptability and impact. 6 It is also young people's right to be involved in decision-making about issues that affect them, in line with the 1989 United Nations Convention on the Rights of the Child. 7 This paper explores a third key reason for involving young people in research processes, which is the benefits that young people see for being involved in mental health research.
The National Institute of Health Research (NIHR) defines Patient and Public Involvement (PPI) as research 'carried out "with" or "by" members of the public rather than "to," "about" or "for" them'. 8 Different levels of collaboration between young people and researchers can all be described as 'involvement'; to illustrate, young people's involvement has been used to describe light consultation or affirmation of researchers' decisions by young people but has also been used to describe research that is entirely youth-led or coproduced. 9 Young people's 'research involvement', therefore, captures a variety of experiences, including advising for, collaborating on and leading research about young people. The concepts of PPI and involvement in research have been problematized by several researchers who point to the power imbalances that continue to exist in most research that involves young people and other stakeholders who are 'invited in' to academic research. 10,11 We recognize these challenges and note that the research and experiences presented in this paper originated in the university and that the benefits for young people do not negate these challenges.
Involving young people in research can be a way for young people to have their voices heard on issues affecting their own and their peer's lives, as well as providing an opportunity for personal and skills development. 12 It can also bring challenges, for example, balancing giving a voice to youth with personal experience of mental health issues against the risk of exposing young people to potentially distressing mental health information. 4 However, research guidelines have traditionally focused on increasing the benefits for the researcher, outlining practical considerations that enable young people's involvement, but view positive outcomes to young people as positive by-products rather than a central aim. 9 Furthermore, there has been a general lack of understanding from researchers about how to meaningfully involve young people with lived experience of mental health difficulties in research, which can result in poor experiences for both parties. 13 Understanding the benefits and challenges of being involved in mental health research from a young person's perspective is critical for developing recommendations for professionals to ensure that they involve young people in mental health research in ways that bring benefits both for the research and for the young people themselves.
There is a growing literature examining the process of young people's involvement in individual projects but this is still not common. Sellars et al. 9 found that fewer than 1% of relevant studies reported details of young people's involvement in mental health research. Even less is known about the benefits for young people who have been involved in research. 14 A narrative review discussing the needs and challenges of young people's advisory groups (YPAGs) in Europe suggested that involvement provides potential to develop a variety of transferable skills (e.g., presentations, project management, negotiation and decision-making) and to develop and extend their social skills and networks. 12 Furthermore, a qualitative study with an opportunistic sample of eight young people aged 14-24 years reported that participation may allow them to have a say in decisions that affect their lives, to make an active contribution to their communities and to improve services used by children and young people. 14 A picture is beginning to emerge of what and how young people can be involved in mental health research but there is still much to be learnt about what makes participation a meaningful experience for young people. This is particularly true for young people involved in mental health research between the ages of 11 and 16 years where parental consent is required and there may be developmental differences in the manner and extent of their involvement.
In this study, we explored young people's experiences of being involved in mental health research in response to issues raised by young advisors on other projects. We wanted to gain a better understanding of what makes involvement in mental health research enjoyable, useful or meaningful for young people as well as to understand any skills, knowledge and personal development opportunities that came from their involvement. We also wanted to give young people the chance to discuss their views on how young people should be involved in mental health research and how researchers can best support them.

| METHOD
Guidelines for ensuring rigour and reflexivity in qualitative research were followed, 15 as well as the COREQ checklist for reporting qualitative data. 16

| Co-researchers
As well as investigating young people's experiences of being involved in mental health research, the present study also presents an example of co-production, whereby young people, aged 18-24 years, with lived experience of mental health problems and experience of being involved in mental health research were employed as co-researchers to work collaboratively with university researchers on data collection, analysis and reporting of results. 9 Such involvement across the whole research process is viewed as central to the research design and builds on previous work with co-researchers (see Fraser et al. 17 ).
Researchers with experience conducting qualitative research (R. W., L. B., C. M.) lead training sessions with co-researchers (J. C., J. D., R. M., R. C., G. N., C. L.) covering topics including a background to qualitative research, epistemology, reflexivity, rigour, memo writing, reflexive thematic analysis, code development and theme building.
Peer-to-peer interviews were offered to participants as a way to reduce hierarchical relationships between researchers and interviewees, potentially enabling more honest discussions than could be had with an adult researcher. 18 We worked collaboratively with the co-researchers to interview young people and conduct a reflexive thematic analysis.

| Participants
Thirteen young people aged between 13 and 24 years and based in the United Kingdom were interviewed. All of the participants had been involved in mental health research when they were between 11 and 16 years of age. The research in which they had been involved covered a range of mental health-related topics (see Table 1) and some had additional experience in research beyond the topic of mental health. The 13 participants had taken part in at least 12 studies between them (many of the young people had taken part in multiple studies and could not always specify the exact number).
Most participants were not known to each other; the maximum overlap was for four participants who had all taken part in two particular studies. Participants were sampled purposively for experience of involvement in different stages of mental health research, age, gender and ethnicity. Full demographic details can be found in Table 2. Names used within this paper are pseudonyms.

| Recruitment
Participants were recruited via an advert circulated to contacts in groups or studies known to have PPI, YPAGs or Young People's Networks. Young people aged 16 years and older were contacted directly and were sent a link to complete an online consent form. For young people younger than 16 years of age, contact was made via a parent/guardian, who was sent a link to complete an online consent form; once this was completed, the young person completed an online assent form. Thirteen young people were interviewed.
Individuals who were not interviewed either did not respond to the email inviting them to arrange an interview or the interview could not be arranged to fit within their schedule.

| Interviews
Interviews were conducted online via Microsoft Teams. Participants indicated on the consent form whether they wanted to be interviewed by a researcher from the university research team; a trained co-researcher; both or if they had no preference. Twelve participants indicated that they wanted to be interviewed by both or had no preference, and one participant opted to be interviewed by a researcher from the university research team only. Some participants were known to the researchers before they took part in their T A B L E 1 Topics covered in participants' research experiences. Interviewers wrote reflective memos after each interview, considering their own sources of bias and prior assumptions, including knowledge and experience gained from personal or professional experience in the field of mental health. See Table 3 for reflections from co-researchers on being involved in the research project.

| Data analysis
Transcripts were generated using Microsoft Teams and edited for accuracy and clarity by L. B. Data were then managed in NVivo. We used Braun and Clarke's 19,20 reflexive thematic analysis approach to guide a process of collaborative analysis with the co-researchers.
Thematic analysis is not connected to a specific ontological or epistemological position; therefore, in this study, the researchers adopted a broadly social constructionist perspective, asserting that all meaning and knowledge are socially created.
L. B. coded all transcripts in NVivo to inductively generate initial codes and co-researchers coded transcripts from interviews that they had conducted. All codes were copied onto an interactive platform for collaboration (Miro), where they were tentatively grouped according to similar ideas. The full research team met twice to discuss code names and emerging themes, using the miro board as a means of collaboratively working and organizing ideas. All research team members had access to the platform and were free to comment on and edit the arrangement on the Miro board both during and after T A B L E 3 Co-researchers' reflections on their experience of being a co-researcher.

Genuine collaboration and open communication
Working as a co-researcher allowed me to use and improve on my research skills to work collaboratively with other members of the research team during the project. [There was an] acknowledgement that our experiences with mental health problems is a part of who we are and shapes our perspectives, but we have more to offer and contribute beyond those experiences and [we were] able to talk openly about previous/existing mental health problems without any pressure/expectations. Flexibility I think one thing that was done really well throughout the project is allowing co-researchers flexibility surrounding their time commitments. Being understanding that often people have other commitments such as work/education that they often have to prioritise goes a long way. I think attempting to (as far as conveniently possible) use a time that suits everyone is great. Then, making sure everyone is aware that there's no pressure to do everything-just as much as they are able to.

Support and mentoring
There was a lot of support available for the co-researchers during the project, I never felt isolated despite working from home. It was easy to get in touch with any of the member of staff involved with the project via email if we had any questions or needed help with anything at all, such as the lead researcher and research assistant and the head of PPI at McPin.
Practical constraints [We were] restricted by hourly pay/only having a set number of funded hours on the project. [It is] hard to dip in and out of a project that requires this much thought, particularly with analysis-I often started my part of analysis, moved away from it for a little while to keep arranging my thoughts, then coming back and making cohesive points.
Training and wider opportunities I think one of the most valuable parts of my involvement was the guidance from senior researchers. This was particularly helpful to me as an aspiring researcher. However, I think it may be beneficial more widely, too. the meeting. Guided by this input, L. B. revisited the transcripts and codes to iteratively update the codebook. Codes were shared with the co-researchers for discussion and approval. L. B. and R. W. used this input to develop an initial thematic arrangement, which was iteratively reviewed by the research team members.
Co-researchers' involvement in analysis was limited by funding restrictions, but researchers sought to maximize the value of their involvement. Co-researchers were asked which parts of the analysis process they were most interested in doing, and preparatory tasks (e.g., cleaning of transcripts) were completed by L. B. (a full-time researcher) before sharing transcripts or early codes with the co-researchers. Naturally, this represents a limitation to the co-production of knowledge in this project and also reflects the challenges of funding meaningful involvement of young people in research.

| Overall description of themes
Young people had taken part in a wide range of mental health (and broader biopsychosocial) research (Table 1)   people confidence and a sense of empowerment, realizing that they F I G U R E 1 Theme 1: Opportunity to have a meaningful impact. The arrows show the bidirectional relationships between each subthemeyoung people want to help out, get involved and gain a sense of pride from their accomplishments, which is facilitated by them seeing the impact that their contributions have had. Being able to see these contributions makes it meaningful and is, therefore, a meaningful use of time, encouraging further involvement and starting the cycle again. The role of the researcher and the mechanism by which it is achieved are not linear, hence the feedback loop represented by the diagram.
F I G U R E 2 Theme 2: Opportunity to be part of a supportive community. Young people starting to build relationships with one another; these relationships are critical to feeling comfortable and supported in a safe space to share their experiences-without pressure/judgement and knowing that support is available. The influence of the researcher is a critical contributor to their feeling safe and comfortable because they must also be warm, understanding and have respect for the young people who are involved. This, in turn, contributes to the feeling of a shared community because people are able to share their experiences and safely communicate about sensitive topics, further facilitating the 'safe space'. Again, the subthemes are highly interactive.
F I G U R E 3 Theme 3: Opportunity to learn and grow. Young people can develop their skills and take away a number of things from their involvement, spanning personal and professional development. Critical to this is the active role of the researcher in investing in young people, by making such development a priority.
F I G U R E 4 Theme 4: increasing opportunities for young people. This theme maps from problem to solution. While the other themes focus on what young people take away, this theme captures how young people want opportunities to be extended to others so that both young people and research can benefit from their involvement. Research is described as a 'mysterious world' and even those who know about research participation might face a number of barriers; this is why it is important to widen the net to reach more young people, which will, in turn, increase awareness. Engagement must then be continually facilitated by understanding the barriers to participation for this wider pool of participants.
could actively contribute to something, with limited input from adults, that could help to improve the experiences and lives of others (  F I G U R E 5 Overall theme diagram: Relationship between themes. Themes 1-3 are about the opportunities that young people are given and what they gain from them, that is, the opportunity to (1) make a difference/have an impact, (2) build relationships/sense of community and (3) to gain skills/personal development. Theme 4 is about how young people find it important that everyone has access to these opportunities, that is, discussing issues around awareness, barriers to participation and ways to reach out more widely to give young people these opportunities.
Participants highlighted how researchers needed to make a concerted effort to build an initial rapport with young people, for example, by being 'like 10 times more friendly and approachable than like a normal person' (Anya) or making time to play games and '[having] a bit of a laugh' (Gemma). Some participants had developed relationships with researchers over longer projects, which allowed them to be more 'open' (Gemma) and 'comfortable' (Elijah) ( 2 Blake …people's lived experiences and perspectives can be so varied, but some things will be similar and in common, and I feel like having that allows people to get to know each other and to be able to relate to one another.
3 India …so everyone kind of knew and could empathize and understand with you. So it was more of a collaborative environment. It wasn't just kind of like, you know, you're the one with the problem and they're getting it kind of out of you. It's like everyone has a shared understanding. Young people also increased in social confidence, which built up over time just by being a part of a group. Several people highlighted that this enabled them to be able to speak in groups and to strangers more confidently (  Young people also talked about the importance of reaching and involving underrepresented groups. There was particular focus on ethnic groups; young people suggested that researchers should make an active effort to reach out to young people who may not have had the opportunity to have a say: 'this is their window into research and they're never going to see it otherwise' (Gemma) ( While not every project will have resources to implement this level of activity, young people in this study suggest that building in time for nonresearch interactions and for developing a shared group identity and vision can go some way towards building connections and feeling comfortable. 3. Leading on from the points above, while involvement does not need to be expensive, it is vital that resources are in place to maximize the benefits to young people. [27][28][29] In funding applica-  27 ). It is, therefore, vital that researchers make efforts to ensure that any research opportunity is as accessible as possible, particularly using creative methods to reach underrepresented groups or young people, and advertising opportunities where young people are likely to access them, that is, via schools and social media. Advertising the potential benefits for young people may also help to encourage more young people to get involved in research.
This study highlights young people's experiences of being involved in mental health research across multiple projects and identifies ways in which researchers can incorporate these findings into their future projects to help maximize the benefits not just to the research but also to young people. These benefits cannot be separated from the benefits to the research of involving young people, and we argue that working with co-researchers in this research has both improved the research and benefited the co-researchers.

CONFLICT OF INTEREST STATEMENT
The authors declare no conflict of interest.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

ETHICS STATEMENT
Ethical approval for the study was obtained from the University of Oxford Medical Science Division Research Ethics Committee.
Participants older than 16 years of age and parents of participants younger than 16 years of age gave their verbal consent; participants younger than 16 of age also provided their assent.