Dr. Umar Toseeb Hello, welcome to the Papers Podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Umar Toseeb, Professor of Psychology. My research focuses on special educational needs and mental health in childhood and adolescence. All listeners to this and indeed, any of ACAMH’s podcasts, are eligible for a free CPD certificate. Do please visit acamhlearn.org for details of this, together with information on how you can access hundreds of hours of free talks, lectures, interviews, all of which you can also get free CPD certificates for. The web address is acamhlearn.org, that’s a-c-a-m-h-l-e-a-r-n.org. If you’re a fan of our Papers Podcast series, please subscribe on your preferred streaming platform, let us know how we did, with a rating or review, and do share with your friends and colleagues. Today, I’ll be speaking to Dr. Alex Lloyd and Romana Saleh, authors of the paper, “No Decisions About Me, Without Me Collaborating with Young People in Mental Health Research,” published in JCPP Advances. Alex and Romana, thank you so much for joining me. Dr. Alex Lloyd Thank you for having us. Romana Saleh Yeah, thank you so much for having us. Dr. Umar Toseeb Okay, let’s start with a round of introductions. Do you just want to introduce yourselves? Romana Saleh I am Romana Saleh. I am currently an undergraduate student at the University of Reading, studying neuroscience and psychology, and I have previous experience as a Youth Advisor. Dr. Alex Lloyd And I’m Alex. I’m a Postdoctoral Research Fellow at UCL, based in London. My research is predominantly around cognitive and emotional risk factors for mental health problems in adolescents, but as part of that work, I like to work with young people themselves to think about how we can make that research most acceptable to other young people, and most relevant, as well. Dr. Umar Toseeb Thank you, and I’m so glad we’re having this conversation, because I think young people’s participation in research, as Researchers, is becoming more of a thing, and I think that it’s really helpful that we’re going to have a conversation of what that looks like and some guidelines, as well. Shall we start with defining some key terms? So, I know that you’ve used terms like ‘PPI’, ‘co-design’, ‘co-production’, in the paper, do you want to start by just telling us what those are, and maybe what the differences are between those terms? Dr. Alex Lloyd Yeah, absolutely. So, PPI stands for “patient and public involvement,” and it speaks to, kind of, like, a broad method of involving people who have lived experience of a topic, involving them in the research that directly applies to their experience. So, it’s not just relevant to mental health, it can also be to physical health, as well, for example, people with diabetes working with Medical Researchers who do work on diabetes research. In mental health, we typically involve people with lived experience of mental health problems, or adjacent experience, caregivers, for example, or other stakeholders. PPI speaks to the broad method that involves people with lived experience. Co-production and co-design are two specific examples. Co-production is where people with lived experience are brought in throughout the entire research process, so very much from the practicalities of designing the proposal, all the way through to designing the methods of the study, thinking about the hypotheses, all the way through to dissemination. So, co-production really involves those people all the way throughout the process as equitable partners, and I think that’s really crucial, so they’re equitable in the sense that they take part in the research in a flat hierarchy, as opposed to, sort of, like, a hierarchical structure. Co-design is a little bit more limited, in the sense that it typically only brings in people with lived experience during the design phase, as is, kind of, alluded to in the name. Still really valuable and still a really important way of doing this work. There’s no, sort of, right or wrong way, one that’s, kind of, better than the other. It’s just thinking about which one is most applicable to different research topics and research designs. Dr. Umar Toseeb Thank you, that was very clear, and it helps to understand what the different levels of participation are. Why is it important to include young people with lived experiences in mental health research? Dr. Alex Lloyd I can start and then, Romana, if you want to come in after, ‘cause I think it’d be really interesting to hear your views. But I think from myself, as a Researcher, I think fundamentally, it’s so important to not take for granted that we know what is best for people who have experiences relevant to what we study. Of course, Researchers will often come into this area with the best of intentions, thinking that what they’re doing is going to benefit people in the longer term, but actually, I think the key thing is to not take it for granted that what we are doing is necessarily beneficial, or wanted by people that experience the subject that we’re studying. By involving people with lived experience, we really get to, sort of, couch our research in terms of what they want, and, also, make sure that, in a very practical sense, the studies that we’re conducting are, you know, acceptable, so then, sort of – or experience is something that is not too burdensome, or not too – something that’s too inappropriate or unpleasant. It can also mean that when we communicate those findings, we’re not just, sort of, phrasing it in a very academic sense, and something that is very siloed and will only reach a very niche audience, but actually something that can connect with people’s lived experience. And Romana, I’m sure you’ve got lots of interesting things to say from your perspective, as well. Romana Saleh Yeah, so I think I would agree with you on all of those points, as well, from a young person’s perspective. But I think for us, it’s so important that the research, making sure it’s relevant, it’s not caught up in the theories or the statistics, but the real world experiences which are everchanging, particularly for young people. And just making sure, especially out in the design processes and when you’re creating outputs, that it is suitable for young people. Dr. Umar Toseeb Thank you, that’s very helpful. I suppose my follow-up question is, how do you convince Researchers that people with lived experiences have a meaningful contribution to make to the research process? Because like you say, I think there might be a, “Ah, well, we know what we’re doing, we know what the research literature says, we know what the theory says, we know where the gaps are in service provision, and we’re going to try and research that.” How do you get people on board? Romana Saleh I think it is based in the flat hierarchy way of thinking, in that everyone’s been a young person before and everybody has had experiences, I think, to some extent, with mental health, whether it’s positive or negative. And I think with things like the media and really big influences for young people, especially now, you just need to remember that young people do actually have something to contribute, and it is meaningful. And I think it’s much easier said than done, but I think just trying to remember that is very important. Dr. Alex Lloyd I completely agree, and all I would add to that, I think, is just that, you know, we talk about statistics and quantitative psychology a lot – quantitative, sort of, methods a lot, but actually, lived experience, it’s not a qualitative methodology. It’s not a – not like that, but it’s adjacent to it in the sense of its putting, sort of, voices to the research process, and, you know, typically with qualitative research, that’s, kind of, the findings of that paper. But with the, kind of, co-production, or the co-design side of things, it’s bringing that, kind of, voice into the entire research design and research process. I think giving it that, kind of, foundation in something that is a lot more, kind of, real and applied, because it is people’s experiences, I think that’s a real, kind of – the way that I would try and sell it to people who may be thinking about engaging with these methods. Dr. Umar Toseeb And what counts as ‘lived experience’? And I ask that because I mean, we’re doing a project where we’re looking at special educational needs and mental health and part of where we are in the neurodiversity movement is that a diagnostic label is sometimes difficult to get because of the diagnostic processes and the waiting times, and, you know, people will self-identify as autistic, for example. So, I suppose in the mental health space, what does lived experience look like? Is it necessary to have a diagnosis of a certain mental health condition, or is it self-labels that are also useful and helpful? Dr. Alex Lloyd Yeah, I think that’s such an interesting and important question, and I think that it wouldn’t be my place to say that someone’s experiences of their mental health is or is not sufficient to be qualified as a Lived Experience Advisor. I don’t think that’s really my call to make. I think the only thing that Researchers probably weigh in is whether or not lived experience, as in having a diagnosis or just having a personal experience of mental health problems, is suitable for that type of research. And what I mean by this is that if I’m doing research on, sort of, service use, for example, then it might be more appropriate to work with people who have a diagnosis, who have been involved as service users. So, I think that’s, kind of, where you might be able to make a call about what should be qualified as lived experience, but I don’t think that’s down to people’s subjective experience. It’s more just the institutions that they work with, because whether they’ve received a diagnosis or maybe not have. So, in your example, for example, you might want to, sort of, think about, if it’s just about the, sort of, experience of neurodiversity, then if it’s not specific to a particular institution, or working with particular stakeholders, then it might not a diagnostic label. But if it’s thinking about the processes of going through the diagnostic procedure, then maybe that’s something where having a diagnosis would be beneficial. Dr. Umar Toseeb Thank you, and let’s go onto what participation looks like when we’re talking about engaging with young people with lived experiences. And in the paper, you talk a bit about the ‘ladder of participation’. Do you just want to talk us through what that is and just any other frameworks for participation? Dr. Alex Lloyd Yeah, so the ladder of participation is probably the best-known approach to thinking about involving people in, sort of, PPI methods, and it, kind of, sits adjacent to PPI methods themselves. So, it’s the idea that there are different levels of involvement that someone might have on a research project, and the idea being that at the lowest, at, sort of, the most, kind of like, low down levels, you’re actually not involved any sort of part of that research process. It’s very much, sort of, people from – hierarchically, kind of, are situated traditionally in, sort of, traditional power, sort of, dynamics, would be situated at the top of the hierarchy, would be telling people what they’d be doing, and, sort of, informing or dictating to those people. Whereas, at the top of the ladder, which is where there’s most equity, it’d be a case of people who themselves were interested in a topic because they have lived experience of it, initiating projects or initiating movements around that. An example in mental health would be, you know, thinking about youth mental health, it’d be young people starting mental health initiatives or a mental health research project. Now, I think there are – the examples of that are relatively limited, in particularly youth mental health research. However, you do get a lot of cases of Researchers with lived experience of mental health starting their own research projects on a topic that is very close to their experience. So, I think that’d be an example of, sort of, the higher rungs of the ladder of participation. But there are, sort of, like, lower levels where, you know, Researchers will initiate a project, but then very much bring in people with lived experience as part of that, sort of, in that co-produced, kind of, way, all the way throughout. And really co-production and co-design can, sort of, sit at different levels of that ladder, but typically, you’d only see it at the higher rungs, where people are, sort of, more equitable in their partnerships between Researchers and people with lived experience. Dr. Umar Toseeb Thank you, and let’s move onto the paper specifically. So, you’ve done a scoping review, and I wrote – when I was reading it, I was thinking, how is a scoping review different to a systematic review? And I imagine lots of listeners would also want to know. Dr. Alex Lloyd The differences are really nuanced in the sense that it, kind of, is related to the amount of evidence that’s available, but also, the, sort of, purposes of the review, as well. So, systematic reviews are typically designed to inform clinical practice or inform some sort of research programme where there’s quite well-established paradigms or measures that are being used. With scoping reviews, they typically are done when there’s a limited evidence base, or there’s less systematic ways of studying that topic. And so, the reason that we chose a scoping review is because although PPI methods, including co-production and co-design, are being used more and more often now, there’s actually limited standardisation in terms of what that actually looks like. Our issue was that it’d be challenging to systematically review that evidence, because there is very little systematisation about how those methods are utilised. So, yeah, the scoping review is very much done to, sort of, scope out what the evidence was, try and synthesise it where it’s possible. So, you can synthesise evidence as we have done in the scoping review, but there are additional quality checks that you would do with a systematic review, like, for example, the risk of bias assessment or the quality assessment. So, those aren’t typically present in a scoping review, again, because the body of evidence is typically less consistent in terms of being able to compare methods and comparing results, as well. Just on that, so something that I think was interesting that came out of this, having done the scoping review, was actually thinking about what would we need to put in place to be able to conduct a systematic review? And I think something like a quality assessment tool for PPI methods would be a really nice and interesting direction to think about how we can then move this from what we’ve done, which is the scoping review, just seeing the state of the arc as it currently is, but thinking about how we look at that more systematically. Dr. Umar Toseeb Thank you. So, we’ve talked about ‘co-production’, and then we’ve talked about the method that you’ve used. Let’s just get onto specifically, what did you want to investigate, and then what did you find? Dr. Alex Lloyd Yeah, so when we originally set out to do this review, our, kind of, idea was that we’d been doing co-production for our project that we had been working on – so we’re investigating a new mental health intervention, and Romana’s been involved in, sort of, the – some of the design elements of that, and from our point of view, as the research team, we were thinking, well, you know, we’ve come and done this work with, sort of, an idea of what is co-production, an idea of what is good to do in this area, and what the appropriate ways of doing co-production are, but actually, there’s no, kind of like, guide book. You know, there’s some really nice examples in the charity sector, but from a research point of view, we were really quite, sort of, going in with limited information. So, the principle behind, or the, kind of, idea behind the review, was to think about, what are the common methods that people use to conduct co-production, or co-design? And how can we, kind of, identify those into themes that we can then actually present to other Researchers who maybe don’t have backgrounds in this area and might want to just think about using these methods? And they can actually then base their initial co-production work around these, kind of, consistent themes that are evidence of good practice in some cases. I’m not saying that all themes are going to be equally relevant for all populations, but these themes can be relevant to a lot of the way that we work with diverse populations who might want to collaborate on research with us. So, the results, what we were able to do, so, we took all these studies and we, sort of, looked at what people were describing as their ‘co-production’ or ‘co-design methods’, and we identified some, sort of, key themes that we – that – from these different studies, that were really interesting in terms of the consistency across different research projects. Often working with, you know, very different topics, so some would be doing, for example, psychometric studies, looking at developing and validating scales, others were working with service users, for example, thinking about how they can improve service provision for underrepresented groups, and then others were doing, sort of, more basic research, thinking about just what is the experience of, like, intolerance to uncertainty in people with anxiety disorders? So, really diverse topics they were studying. But what was quite interesting was that from this, there were some really consistent methods in terms of how they worked with Lived Experience Advisors on their projects. And some of the things that we saw quite a lot of were the fact that people were quite consistent in really setting the scene for people who were collaborating on research. Because a lot of people who were working as Lived Experience Advisors didn’t necessarily have a background in psychology, didn’t have particularly – sort of, you know, training in this area And so, there’s a large process of setting the scene for these people to make sure that they were able to understand what was expected of them in their role, not having been involved in a research process before. What was also – and the limits their role, as well, which I think is actually a really beneficial part of that, in the sense that, you know, we don’t expect people who don’t have training in psychology to know what a – I don't know, what an experimental design looks like, or what an RCT looks like. So, actually letting them know that it’s not need – it’s not necessary for them to understand the, sort of, the minutia of what the design looks like, but also making sure that they were then able to contribute in a way that they felt they were making meaningful contributions, by really setting up what the, kind of, scope was of their involvement. So, that scene setting process was one thing that came out and I think was really good in the sense of also making sure that people had an opportunity to ask questions about what they were being asked to do, and, also, you know, make sure they were comfortable taking part. The second, kind of, theme that we identified from that was this idea of ensuring that the engagement for Lived Experience Advisors is appropriate. And what we meant by this is that there was a lot of conversation about who you would be working with, who you’d be recruiting as collaborators, as Lived Experience Advisors. Because there are cases where you might want someone who’s a service user, for example, who has that, kind of, direct experience in, say, for example, CAMHS, Children and Adolescent Mental Health Service, but if you’re then a Researcher within CAMHS doing research about your service with people who have lived experience of using that service, then actually, there might be a conflict of interest there. So, in some papers, we saw there was actually explicit rationale for not working with people that were direct service users but had used other services, for that, kind of, avoidance of conflict of interest. But the, sort of, appropriate engagement, as well, also spoke to the fact that, you know, this is a topic, or they’re often topics that could be quite triggering for people, could be quite upsetting for people. And so, making sure that when you are working people – with people who have lived experience that actually the methods you’re using aren’t, sort of, direct questions and answers that might be quite combatative, or might feel quite combatative, but rather, actually thinking about using creative methods to, sort of, allow people to talk about their experiences in ways that aren’t, sort of, as direct as just a question and an answer. So, really, kind of, trying to make sure that people were comfortable in their collaboration. The next one that we really thought about and saw across different studies was this idea of cyclical processes. And the idea with this is that sometimes research projects would work with the same group of Lived Experience Advisors, and they would, sort of, work with them throughout the entire research process, and this would be, kind of, closer to that co-production. So, really bringing people in to collaborate very early on and, sort of, working with them throughout the research process. But there would also be times where actually different people would be at each part of the research process. So, you’d still have this idea of co-production in the sense of people with lived experience would inform on all aspects of the research cycle, but actually, the individuals that made up those advisory groups would be different each time. And within the studies we reviewed, it wasn’t always clear if this was down to, kind of, lack of explicit designs, thinking about getting diverse opinions and, sort of, really having that, kind of, broad perspective on a topic, or it might be down to more logistical issues, like not being able to recruit people over time. And thinking about particularly young people, if you’re doing a multiyear study, people do age and, you know, sometimes people will become older than the research – the particular group that you’re studying. So, I think there are, kind of – there are both, sort of, practical, kind of, considerations as to why you might work with different groups, but also, potentially, quite explicit ones, thinking about the diversity of people that you’re working with. So, our last one was about understanding people’s cultural context, and again, a large recognition in lots of the studies that we reviewed was that there wasn’t diver – as div – as much diversity in lived experienced advisory groups as there was in the people that experienced mental health problems. But there were some really quite poignant examples of where Researchers had explicitly taken an approach that was, kind of, aligned with the culture of the people they were working with. So, there was a really fantastic example of a research group that worked with Aboriginal young people and specifically were asking their experiences of using mental health services, because their – the uptake was typically quite low from those populations. And they used an approach called ‘yarn’ which is a particular style of communication that involves, sort of, more storytelling elements. And they found that by actually, kind of, meeting those young people where they were, they were able to actually involve young people who typically wouldn’t discuss things around mental health. We also saw some really fantastic examples of where young people’s impact had really changed the research design, particularly with, kind of, the design of the mental health interventions. There were some really fundamental differences that young people were able to make that actually, ultimately, massively benefited that research process. Romana, do you – I mean, I don’t know if you want to come in and speak to any of those, kind of – from when you wrote your response to them and, sort of, any that stuck out for you? Romana Saleh One of the ones that stuck out for us were scene setting, because there were some people from my experience who had a background in psychology, who had studied it, but there were people who didn’t, and there were people who brought their friends in at some points, as well, to contribute and help. And I think scene setting was particularly helpful for them, because they know what their target is and they know, kind of, what the research is based upon. And I think using a cyclical process, as well, really stood out for us, and just including young people at different points, and if possible, more than one point, I think was really useful. Dr. Umar Toseeb Thank you. So, just to recap here, so based on your scoping review, you’ve identified these four themes in the literature, so scene setting, ensuring appropriate engagement, using a cyclical process, and understanding the cultural context, but – and based on that you found evidence of lots of good practice. Is there any evidence of people doing stuff badly, as in what not to do? Did you find that as part of the process? Dr. Alex Lloyd I’d struggle to say there are examples of bad practice. I think what we saw in the review was that there was methods described and there were cases where people, for example, would take a particular approach. But it wasn’t clear from at least what was described in the manuscript, and I think it’s important to acknowledge that this is potentially down to, sort of, the reporting rather than the, kind of, intention, but I think there are things that we didn’t see in terms of the rationale for certain approaches. And I think that’s something that really came out from our point of view of thinking about doing PPI in the future, is that really making sure there’s an explicit rationale for the certain approaches that you take. So, just giving the cyclical example one as a, sort of, case study. Sometimes young people would be brought in, sort of, throughout the research process. Other times it’d be just a single, kind of, co-design session. You know, and it’s not to say that one is better than the other, but I think what’s important to, sort of, think about and consider for Researchers moving forward, is, what is the explicit rationale for that? It’s fine to use a single co-design sess – sort of, session, if you are, you know, doing a snapshot study, like a cross-sectional study on a particular topic, and, you know, you just need to, sort of, you know, work with young people in a collaborative way to, sort of, get that study going. But if you’re thinking about, for example, like, an intervention, and again, you’ve got different young people each time, like, is that the best method? Is that the most appropriate method? So, I think it’s – again, I – not to say that there are examples of any bad practice, necessarily, but I think it’s more a case of just making sure you’re explicit about why you’re using certain methodologies. And I think one thing we really wanted to highlight in the review is that there are different ways of approaching each of these themes that we’ve identified. You know, you might, for example, set the scene about – in certain ways, but it’s just about being explicit in your, kind of, approach to why that has been done and, sort of, thinking about reporting that in some way. I know that, sort of, journals sometimes don’t have the, kind of, most liberal, sort of, reporting standards for, sort of, how we report this, but even thinking about, you know, supplementary materials and where this, kind of, design of our PPI can be documented really thoroughly. Dr. Umar Toseeb I think the one that I was thinking about is, how do you, as a Researcher, or how would we, as a Researcher, ensure that our engagement with people with lived experiences is meaningful and not tokenistic? ‘Cause I think sometimes – I mean, I know that in my field, there are journals where you’re required to put a statement about community involvement or something, which is basically, how did you involve – if it’s about young people, how did you involve young people with lived experiences? And that kind of external pressure to research might mean that some Researchers might not meaningfully engage, but tokenistic. Was there any evidence of that in the literature that you scoped out? And I suppose some of that might come through as a lack of detail and a lack of rationale for why they’ve done the engagement that they have. Dr. Alex Lloyd Yeah, I think the cases where – again, you know, it’s difficult to, sort of, make a firm judgment if that was or wasn’t the case, but I think, you know, there – you – there are definitely cases where the pipeline from rationale for the PPI into how we did it and then why we did it, and then into what the output of that was, I think that pipeline wasn’t necessarily well documented. And I think those are cases where perhaps it’s – like you say, there are pressures to have lived experience involvement, but you aren’t necessarily confident or sure about where that fits into your specific design. And I can very much empathise with that. Some of the work that I do is using, sort of, computational modelling, and that’s a hugely technical, kind of, method that you then have to, sort of – if you want to meaningfully involve young people in, trying to, sort of, bridge that can be really tricky. So, I empathise, and I think a lot of it comes to just not knowing where lived experience fits within some of these really technical projects. But I think in terms of, kind of, how we overcome that, I think is about building relationships, and I think it’s really about, kind of, thinking about having groups that you work with that you build meaningful relationships with. It might be individuals that you’ve worked with previously, it might be working with charities who work with particular populations who are really involved in research, but I think it’s just about bringing those voices in from very early on. And I think that’s how we try and overcome the idea of it being tokenistic, because it’s not just about getting people in as a snapshot into our research to, sort of, tick a box, but actually, it’s about the relationships that you have with those people, maintaining those. So that, you know, when it comes to starting a new research project and you might need someone’s insight, actually, you’ve got that prior relationship there, and you’re getting their perspective because you meaningfully know that they are going to contribute, rather than just because it’s the done thing. Dr. Umar Toseeb Thank you, and I think that leads onto my next question, and we might have already said a lot of this. Based on your review, what are the recommendations that you have for Researchers who want to engage young people with lived experiences in their research? Romana Saleh I think the key thing from our perspective, is to not just use young people as a tick box or because you have to. If you really want to meaningfully incorporate people, you need to think about the rationale behind it, and why and when. And I think just starting off by that, and echoing everything Alex had just said, is really important, because that tokenism is causing an unnecessary disadvantage for both parties. You know, the Researcher or Researchers have more work to do, they’ve got to organise meetings, stay in contact with us, etc., and the Youth Advisors feel like an inconvenience, which can be quite discouraging, especially if they’re not being paid or renumerated in any way. Then it’s just, kind of like, oh, I just, you know, wasted my time for nothing, essentially. Dr. Alex Lloyd Yeah, I completely agree, and I think that’s really crucial, isn’t it? I think it’s about thinking about the motivation about why you’re doing this work and what it actually brings to the research project that you’re developing or conducting. Probably my biggest recommendation is just making sure that you put the time aside for this work, because it doesn’t – it’s not something that happens within, sort of, an hour. It is time consuming, but the time that you put in pays dividends, because what you get out of that involvement is so important and so enriching for the project, that I think it’s really worth investing that time. And I think the time comes down to a lot of the things that people don’t really realise they need to be doing until they’ve started, because there are things like, for example, safeguarding. You know, you don’t necessarily need ethical approval in order to do work with people with lived experience. There are some cases where you may need to, and the Co-Production Collective have a really good guideline on when this is and isn’t appropriate. There are cases where you don’t necessarily need that ethical approval, but you should then be thinking about, okay, irrespective of that, what is my safeguarding procedure if I think someone is getting distressed or discloses something during our meetings? Romana mentioned, you know, things about making sure that Lived Experience Advisors are paid for their time, because, you know, they are experts in their experience. I think there are even things about, what is that session going to look like? How is it going to run? There are things that arise through the process, but I think unless you’ve given due consideration and really given yourself the time to think about that, then I think you can be caught out by just some of these really small details that will inevitably come to the fore. Dr. Umar Toseeb I have a very niche question based on my experience of PPI. One of the things that we learnt as we went through the process was the size of the group at the time at which you’re engaging with young people, and I think over the process we’ve learnt that the smaller the group is, the more you get out of people in general, but specifically young people. Do you have recommendations around group size, or is it just, like you say, on your research questions, on your topic? Dr. Alex Lloyd What I would say is that there should always be fewer Researchers than there are young people, for example. I think that’s a really crucial thing, because you don’t want to have, you know, young people coming in with, sort of like, five Researchers and there’s two of them and they’re expected to, sort of, you know, give loads of information when it’s quite, sort of, like an interrogation. I think in terms of the size, I would say that I do think it comes down to an element of personality. I think you, you know, you can sometimes have really amazing groups who are really chatty and they really bounce off of each other, whereas other times you might have, sort of, like, quieter groups, who would prefer a, sort of, slightly smaller group size. And I think, you know, thinking about the areas that we work in, neurodiversity, mental health, you know, I think you can probably have a relatively good understanding of what people with lived experience in a certain topic might feel comfortable with. So, you might be working with someone with autism, for example, and you might, sort of, expect they probably wouldn’t feel super comfortable in a large group. But also, what that co-production session might look like, or that co-design session might look like. If you’re doing, sort of, more creative activities, then actually a large group can work really well, because you can have people, sort of, split off and people can come back together and discuss and compare. If you’re just intending on having a conversation, then maybe actually a smaller group is more appropriate. Dr. Umar Toseeb Thank you, and one of the things that I really liked about this paper was that you had people with lived experiences as co-authors, and I think that that speaks to somebody you said earlier on, Romana, about the flat hierarchy, as in, the lack of hierarchy. What was that experience like for the both of you, being co-authors on a paper with a) an academic, and b) a person with lived experiences? Dr. Alex Lloyd It was a great experience, from my point of view. I think it was really interesting because it was helpful to have Romana and Adeola, kind of, contribute, because it really affirmed what we had spoken about in the review. But also had that really interesting perspective in the sense of – ‘cause Romana and I have worked together for, like, several years now, and actually, like, you know, thinking about, oh, when I started out, like, doing the first, sort of, groups, was that was actually modelling some of these things that we have now spoken about. So, I think it was a really interesting, like, self-reflection piece, as well. So, I had a really positive experience, and Romana, what about you? Romana Saleh Yeah, I also had an amazing experience. From a very self-focused perspective, it’s been extremely beneficial in terms of my academics and career development. Like, the whole process, and working with Alex on previous things, as well, gave me, you know, the early insight into research, letting me get my foot stuck in the door, meeting people. But then, also, just the process of writing it up and stuff, and knowing that what I had done, what I had contributed, was going somewhere useful that people would see, it was really lovely, and really refreshing, as well. Because I know there’s a lot of young people out there who have worked on projects where they haven’t been incorporated fully, it has just been very tokenistic, and they just felt completely pushed to the sidelines. So, yeah, it was just absolutely amazing. Dr. Umar Toseeb Just to finish off, what’s your take-home message for our listeners? Romana Saleh Mine would be if there’s any young people listening, don’t hesitate to reach out, whether that’s to join a project or to ask a question, reach out, ‘cause it does snowball a lot. My Teacher at sixth form said, “Oh, if anyone wants to apply to this thing,” and I was, like, “Okay, I’ll do that,” and this is where I’ve ended up these years later. Dr. Alex Lloyd My take-home message would be that this is time consuming work, but it is such important work. It really benefits individuals, like myself and Romana, I think we both benefited from doing this work, but it also really benefits the research and the people the research can help, as well. So, not to shy away from it, not to think that it’s something that is not worth doing, but to really spend that time meaningfully engaging with the people you’re working with, whether those are academic colleagues or young people colleagues, really engaging with those people. Really thinking through what you’re doing and why you’re doing it, because ultimately, it is something that is hugely beneficial. Dr. Umar Toseeb Thank you, both, thank you so much for this. I think it’s been a really interesting conversation, and I hope that it will serve as a catalyst for Researchers who want to collaborate with young people in mental health research. So, thank you both. Dr. Alex Lloyd Thank you very much for that. Thank for having us. Romana Saleh Yeah, thank you for having us. Dr. Umar Toseeb Thank you. For more details, please visit the ACAMH website, www.acamh.org, and Twitter @ACAMH. ACAMH is spelt A-C-A-M-H, and don’t forget to follow us on your preferred streaming platform, let us know if you enjoy the podcast, with a rating or review, and do share with your friends and colleagues.