This paper reports findings from a survey of ECRs regarding their perceptions and experiences of involving young people and adults in research on mental health, self-harm and/or suicide. The findings suggest that although involvement work is valued, researchers at an early stage in their career face particular - and potentially significant - barriers in undertaking this work. Some differences in involving young people compared to adults were apparent - for example, young people were reported to be involved in the ECRs’ own research less frequently.
Perceived value of youth and adult involvement in research
ECRs considered youth and adult involvement in research to be valuable generally, as well as being valuable to their own research. They also reported that their institution and department appeared to value youth and adult involvement in research. However, a notable proportion of ECRs reported that their institution did not undertake involvement activities (or were not aware of such work). Ratings suggest that ECRs feel relatively well supported, confident and knowledgeable when undertaking youth and adult involvement in research. Although some ratings were lower for youth versus adult involvement, the only rating difference of significance was the perception of value that institutions gave to youth versus adult involvement (lower for youth). Youth involvement yields the same barriers as adult involvement, but may have additional barriers such as gatekeeping, ethical concerns about child involvement, and being considered a ‘difficult to reach’ population in general. It is also possible that young people are regarded as being less capable of making a valuable contribution to research, but this requires further exploration. It should be noted that most respondents had a supervisor or line manager who undertook youth and/or adult involvement, thus providing a potential source of expertise and support.
How ECRs involve young people and adults in research on mental health, self-harm and suicide
Both young people and adults were involved in research through similar methods across the research life cycle. Both groups were most frequently reported to be involved in developing research resources (such as participant information sheets) and dissemination of research findings. These are relatively discrete and time-limited activities within the lifespan of a research project (and arguably easier to manage and cheaper). The least often reported involvement activities for young people and adults were data analysis, preparing research applications and reporting the research (a more in-depth level of involvement along the co-production continuum) - tasks which possibly require more expert knowledge of research topics and academic processes. Youth and adult involvement in the analysis or reporting of research findings (for example, respondent checking and validation of themes in qualitative work) may not always be achievable or desirable, depending on the methodology. Indeed, this specific method might have a limited capacity within youth involvement (e.g. due to complexity of tasks and lack of research experience), however, arguably it is the responsibility of the researcher to make such activities accessible to the target audience. Public involvement in preparing research applications should arguably be more common practice given funding body PPI requirements, but it should be acknowledged that ECRs may not have been involved with their current research at such an early stage. Finally, compared to adults, young people were reported to be less frequently involved in identifying research questions, contributing to study design and in managing the research (in the form of an advisory committee, for example) - although our data do not speak to why this might be. If young people are not being involved in setting research questions and priorities, their views risk being ignored in the national youth mental health research agenda . It might be that researchers are less inclined to engage with youth involvement due to the additional steps needed to adjust tasks to meet the abilities, preferences or language needs of younger people.
A previous analysis of the types of involvement activities reported in applications to the National Research Ethics Service (NRES) also found that dissemination of research findings was the most frequently reported activity whereas analysis was the least frequently reported activity . Young people involved in mental health research have expressed a desire to be involved in every stage of the research life-cycle  and at the far-end of the involvement/participation continuum children can be successfully supported as researchers in their own right through child-led research [18, 19]. Future research could explore ways of facilitating youth involvement in mental health research further, for example, identifying those parts of the research process in which young people can be involved and where youth involvement can lead to improvements .
Barriers and facilitators in undertaking youth and adult involvement in mental health, self-harm and suicide research
Barriers to involving young people and adults in research on mental health, suicide and self-harm were: 1) ethical issues and perceived risk (ethical approvals and access to young people/specific groups, perceptions of risk involved); 2) real costs (in terms of money/time) versus perceived value; and 3) the challenge of recruiting people. The barriers related to ethics and perceived risk may help explain why youth involvement was reported less frequently or why young people were less often involved in particular involvement activities (e.g. managing research). It is concerning to see that ethical considerations appear to be presenting a significant barrier to involvement in research, particularly in light of recent guidance from the Health Research Authority /INVOLVE, which state:
“You do not need to apply for ethical approval to involve the public in the planning or the design stage of research, for example helping to develop a protocol, questionnaire or information sheet, being a member of a research advisory group, or preparing an application for funding or ethical review, even when those people are approached for this role via the NHS … However, there are some situations where the involvement of the public may raise ethical concerns, for example, when they will be involved with collecting and analysing data, such as helping to analyse survey data, conducting interviews, facilitating focus groups or recruiting participants.” (Health Research Authority / INVOLVE, 2016, p2-3).
It is problematic if youth and adult involvement activity is not going ahead in mental health/self-harm/suicide research due to unwarranted ethical concerns, particularly as this is something that ECRs may not feel in a position to challenge or debate. It is important to emphasise that there is increasing research evidence that participating in research on self-harm and suicide does not have a detrimental effect on participant well-being. A recent meta-analysis of the impact of exposure to suicide-related content in research protocols indicates a reduction in suicidal ideation and behaviour after being exposed to suicide-related content or suicide assessment. Notably, this reduction was largest in young people  There is no reason to assume involvement in such research in an advisory capacity should be any different (though future research could usefully address this).
The second barrier identified relates to the practical costs (time and money) that undertaking involvement work can entail (balanced against the perceived benefits) and the third relates to the challenges involved in recruiting people to be involved in research. ECRs have a limited timeframe in which to complete their research and face many other competing research priorities. However, successful approaches to engaging young people in ‘sensitive’ involvement activities, for example in drug and alcohol research, requires a researcher to be flexible and young-person centred, and crucially takes time . Nonetheless, within this context, the respondents highlighted potential ways in which to facilitate their youth and adult involvement work: expert examples, expertise and guidelines; and investment in involvement work (practical resources, especially money; wider community support; a supportive culture within institutions). In particular, funding needs were highlighted by ECRs – indeed, over two thirds of ECRs did not have access to funding to support their involvement activities. INVOLVE offer guidance regarding payment for PPI group members to compensate them for their time and expertise. It would be difficult for ECRs to adhere to these best practice guidelines without access to sufficient funds (e.g., where funding is not available, involvement activities may be reliant on people giving their time for free. Additionally, ECRs may be unable to cover travel costs incurred by involvement group member). This potentially magnifies already complex power imbalances, if some people (i.e. researchers) are being paid for their time and expertise, whilst others (i.e. PPI members) are not. The costs of involvement have previously been cited as a barrier to encouraging user involvement in mental health services , but there is evidence that the provision of small research development bursaries for PPI can support involvement activities and help develop this aspect of research . However, much of the other support required could actually be provided at minimal cost to institutions. There is ample published guidance on PPI, but perhaps more hands-on mentoring or discipline specific guidance is required, or even simply improved signposting to such resources. Some of this could be achieved by raising the profile of research involvement as a valuable research activity within higher education research – although this would require significant buy-in from institutions.
At a more individual level we would urge ECRs to think creatively about how to best achieve their research involvement aims, by utilising technology and social media (i.e. virtual involvement) and by networking and collaborating with research colleagues in their field(s). In order to act as drivers for change, ideally ECRs need the support of their supervisors, senior colleagues and institutions. There is an apparent lack of clarity regarding ethical and risk governance issues surrounding involvement work in mental health, self-harm and suicide research, which may pose a substantial barrier to youth and adult involvement in this research field. We would argue there is a need for more targeted guidance for involvement work in this area and improved access to (modest) financial support.
The survey respondents constitute a highly selective and small sample, with an interest in youth and adult involvement work. Due to our recruitment strategy (social media) we do not know how many ECRs in mental health research chose not to participate. Future survey work could aim to recruit a larger sample who are not necessarily as invested in involvement work.
The terminology used to describe involvement work is confusing and used interchangeably (e.g. engagement, involvement, knowledge exchange, PPI). Although we attempted to be clear in our participant recruitment material and wording of questions, potential participants may not have considered themselves eligible to participate due to another term being used in their experience, or may not perceive the work they do to be involvement work (e.g. consulting an advisory committee). Again, the distinction between youth and adult involvement can also be variable and thereby impact how the two populations are considered.