Any other costs to researchers? No. What I kind of think about though is I find that there are, for researchers there are when I go to INVOLVE conferences and all these conferences, there are a group of researchers who are very, very into involvement and they spend all their time thinking about involvement and research and involvement and undertaking involvement. And then they go to these conferences and they present to everybody else who was already doing that involvement work and everyone’s like, “Yes this is what should be happening.” What I’m finding more and more difficult and I suppose I took myself out of my comfort zone last year, because I’ve tended to do presentations and workshops in the INVOLVE conference and in conferences where people are going to be susceptible to what I’m saying; is that actually went to the UK society for behavioural medicine and run a workshop about our research advisory group with a group of researchers who don’t undertake involvement very often and it’s a very alien concept to them.

So I think, thinking about the benefits and the costs I think one of the things we should be trying to do, as those people who are into involvement or involvement co-ordinators, is promoting it to other people outside of the people who already are on-board with us stop talking to the people who are already converted and try and get it out there a little bit more. But I feel it’s that group of researchers who don’t see the benefits and think there’s too much costs to warrant the benefits. So yeah I think maybe a bit more of a focus either nationally or we need to think more about how we get it so it’s just part of people’s practice. Because I think there’s a; the majority I would say of researchers, are not doing involvement so.

But interesting that the National Institute for Health Research have put out a consultation and it is closed now but it was called Breaking Boundaries I think. And they asked people to write in about what has been positives about their groups and, again we found that we wanted to put in something a little bit different to maybe what they were asking and I don’t know how this is going to fall into; how they’ll take on our feedback and think OK. Because what we talked a lot about was not about and maybe people expected us to write a lot about the young people’s group and say, “These are the benefits for the young people and these are the benefits for the researchers.” Instead we focused very much on how we’ve set up culturally within the Centre and how we’ve looked at, not just the individual level needs of the young people and the researchers etc., but also what do we need to do at a research centre level to make sure people are doing public involvement.

So again it’s about setting up those meetings those research ideas meetings I’m on those meetings. There’s also an expectation that all the bids which kind of go in that public involvement is featured in them. Either, or both you’ve done public involvement in your bid development and how you’re going to do in the future or if there maybe was any public involvement how you’re going to do it in the future. And we’re trying to get a system where all those bids will go to our research centre manager and they will check that there is public involvement costs in there. If there’s no costs in there it’ll be, “Have you spoken to Hayley, because really we should be putting public involvement in here?” And that is kind of a way of us saying, “Right in the first instance when people have research ideas, we’re going to try and get them through this group.”

And then they’ve got the system where the research projects and ideas are captured as soon as possible so I can come in and say, “Right OK then we need to think about public involvement.” And the one thing which somebody said to me here the other day is it’s really interesting that, since I’ve been in post, that public involvement has become just something that everybody knows about and talks about and thinks about when they start developing up research projects. And it is ingrained in the way that whenever we have new staff we have an induction procedure and in the induction is a write up from me, and from other people who work to support the research, and they’re always booked at least a half an hour meeting with me so I can talk to them about public involvement. So when they’re doing their research projects and when they’re developing up their research projects, straight away as soon as they come into the Centre they know the public involvement is important. So, yeah the barrier I suppose, or the issue for people for the timing and it takes longer, maybe some of that has been taken away from the researchers just in the way that I’m there to support them and they know we have a young people’s group or if not, we try to work with other young people outside children and young people outside of that, but it’s become a little bit more part of the culture so I think people who maybe have objections to not involving young people because of the timing and the finance, they don’t have those support mechanisms and they don’t have those things in place to support them straight away.

So I’m trying to think if I’ve thought; if there’s any other objections I’ve heard of. Yeah I think, yeah maybe the value and then the timing and how much it’s going to cost has been the three main objections. And it’s interesting for me, when I first came into the Centre I think I said I did a questionnaire with researchers just about their barriers and facilitators to involving the public in their research projects, and those things came through. Those things came through and I was like, “OK we need to think about how we set this up in a way that it’s very supportive for the researchers.” And I think it can be quite daunting for researchers as well.

So some of the things which also come from that questionnaire was, some of the researchers were quite worried about going in to work with a group of young people, being a researcher going into the young people’s group. And we have set it up that way that it’s the young people’s group and the researchers come into them because of all sorts of power dynamics of maybe one or two young people sitting on a steering group, we didn’t think it would work. And yeah I think the researchers, a lot of them in the pre-meeting before they come and work with the young people’s group, in that pre-meeting and they always ask about how can I do this in a way which is interesting to young people? How can I get them engaged in this? And kind of the second thing is, they’re really happy that me and the youth worker are going to be there to support them on the actual day because they’re like, “I don’t think I’ve really; well I did a research project a couple of years ago and I interviewed some young people but this is a little bit different and I’m happy you’re there because I wouldn’t want to go into the group on my own without the support and if there’s anything that I do wrong or anything I say wrong, just feel free to pick me up on it.”

So yeah, so I think one of the barriers and one of the issues for research staff here was they really wanted to do it but they’re just a little bit unsure about how to do it; had a little bit of anxiousness about actually going into a young people’s group so.

I think my role, because I facilitate work with the young people is very much I use my skills as a youth worker; try and make all the stuff we do quite engaging; try and make sure that I can build up a good rapport and relationship with young people. Try and make sure that it’s not too boring and not too schooly is what the young people say to me. So there’s a whole different set of skills there to actually working with the researchers. And I think some of the skills I’ve had to kind of think about, when working with the researchers, is being able to understand the research and the jargon and being able to support them in how they can involve young people. So I have done some training with the researchers previously and we when I first started we did a question about their barriers and facilitators, to why they can or cannot involve young people or children in their research and that, for me was a really good starting point. It was within my first six months, I had a very clear idea of what the researchers thought could be the issues and what things they thought could be potentially helpful for them to do this.

So I think some of the skills I’ve kind of developed up as well as being kind of, trying to work within the parameters of those two different stakeholders because sometimes what the young people want and what the researchers want are very different. And to also understand that, with the researchers sometimes they are not in a decision making place. So some of my other work in local authorities we would work with the decision makers directly, whereas with researchers, when they’re going for research funding, they’re not actually making a decision on whether that research is going to be funded and whether it’s a good idea and so, they’re kind of also taking on the young people’s views and it took me a while to kind of build-up that knowledge of research, the real world, the reality of research I think.

Some of the other things I suppose behind the scenes is working with the young people things such as dietary requirements and things which I think people kind of overlook. We do a lot with the young people with kind of ; we make sure we know all their dietary requirements and allergies. Any things in regards to if they’re on any medications and just things. So we have someone whose first aid trained but if we have somebody one of my young people has asthma if they have an asthma attack we’re prepared and we know about it. And also I’ve just thought of something else anyway also we, as part of the risk assessment as well we’ve obviously thought about child protection because we’re working with fourteen to twenty one year olds.

There may be issues with child protection and because we have young people who actually come from different local authorities within Wales, each local authority has a different system. So we’ve got a file which in there has all of the different local authorities our young people come from. So if we have a child protection issue we’ve kind of printed off their web page to find the number we contact that local authority. So there’s a lot of things which I suppose some people wouldn’t really think about which we’ve just have to prepare and make sure we’re prepared for. We also have somebody who is a manager, who is an emergency contact. So off site all the young people fill in a consent form. They can fill it in themselves if they’re over sixteen. If they’re under sixteen we have to get it filled in by a parent or guardian. And we ask everybody, even if you are over sixteen, to put an emergency contact on there so if something happened here we would be able to the process is I would phone our off-site emergency contact which would be one of the managers who then has all those details to phone families to say if there’s a been a fire in the building or.

Well because I come from youth work we do sort of introduction to youth work training and a lot of these kinds of aspects are covered in that. So I came here with the knowledge of that. I do think to myself if I’d come from maybe just a research background there’s some of these things I wouldn’t have instantly thought about. And this is where I think that it’s important when we’re doing research, but also public involvement from sort of academia from research institution, centres, universities, it’s always important to have on-board somebody who is familiar with the public or has worked with our public before. So in our case it is young people and we have myself and the youth worker we’ve done that before. There may be a whole other level of guidance and there may be other issues to think about if you’re working with adults who are under a protection of vulnerable adult’s action and I wouldn’t know anything about that but, it’s important to understand the issues for that public. And I think you can only really do in that either having worked with that public before or asking them.

Well currently we, we run the young people’s group on a Saturday and the researchers come in and they work with them. And we ask them to we’ve put a system in place really where both the researchers and the young people get an opportunity to assess how it went if you like; how did the involvement go? And, one of the things we did with the researchers is after the session and the researchers are at the sessions, we write a summary and we try to do it that the young people have a bit of time to discuss and debate some of the issues and then they try and raise three or four main things, main important things, they want the researcher to take away. And myself and the youth worker will always write that up and send that over to them and say, “This is kind of a summary of what has come from your session.” And then about a month after that we follow that up with a reflections questionnaire, just asking the researcher to reflect on what the young people have told them. Have they been able to use their views? How have they been able to use their views? And also we get the young people to do a quality assessment where we ask them what they felt of the involvement activity they ran with the researcher and how that could be changed. So we’ve got those two kinds of processes of assessing in place.

And then it’s easier for us to track what the young people have said and what the researchers have responded to it. So we’ve had some instances where it’s not been possible for the researchers to take on what the young people say. But I feel like the young people are happy as long as we go back and we say, “This is the feedback and these are the reasons why we can’t take up this idea of yours.” And I think it’s kind of sometimes researchers feel, “Oh I can’t do it so I should just like not tell them that I can’t do it.” But actually I think the young people respect the researchers more when they do come back and say, “We can’t do it and these are the reasons.”

We’re having someone come in to do a little bit of research on the young people’s group – hopefully in a couple of months’ time that’s going to start. I’ve done quite a lot of reading of the evidence base. I think I’ve noticed more recently that there are more projects being funded to look at the evidence base and realist evaluations. I know there’s been two realist evaluations which are currently, collected data and are preparing academic outputs journal articles and stuff and I’m really interested to see those.

Because when I first came into post in 2011 it was; the idea was there’s a lot of anecdotal evidence, there’s a lot of anecdotal sort of stories, but there’s not a lot of hard cutting evidence that this makes any difference. We’ve always here had the idea that we’d like to go into research in the area a bit more and what we’ll be looking into, putting research bids together with other partners to look at how involvement is happening.

And I think we should be looking at saying, “OK we should be going to steering groups and we should be focusing on things like maybe conversational analysis of when the decisions are made who’s saying what and it’s the point at where the decision is made where I think we’re not focusing. We’re focusing on all the other stuff which is practically getting people there but it’s great to have people on a steering group and to have lay members stay on a steering group. Or have young people on a research advisory group. But if that happens but then the decision is made without considering that and we’ve already talked a little bit about sometimes you cannot take on what the public, sometimes you have limitations because what funders will fund or because you have to do things a certain way. Nobody’s really looking at, OK this is where the decision is being made though and there’s three different types of knowledge here and how is this knowledge being combined.

If those researchers are just going, “Oh yeah that was lovely; we did a lovely event and we had the young people there or, we had two people on the steering group, but actually what they said is brilliant but we’re just going to carry on.” Then are we, is that good public involvement? And I think that’s where the evidence base is missing. And there’s lots on shared decision making between consultants and practitioners and the public in individual decision making. And that for me would be a better area to explore. So OK well some people have gone in and they’ve researched consultants or people within medicine talking to patients and them coming to a decision together. OK well how do we research involvement thinking about decision making and the conversations which are being made around research? So I think it’s got better, but I think we’ve still got some way to go to focus down on making sure that we’re evidencing the right things. It’ll be interesting.

I think my role, because I facilitate work with the young people is very much I use my skills as a youth worker; try and make all the stuff we do quite engaging; try and make sure that I can build up a good rapport and relationship with young people. Try and make sure that it’s not too boring and not too schooly is what the young people say to me. So there’s a whole different set of skills there to actually working with the researchers. And I think some of the skills I’ve had to kind of think about, when working with the researchers, is being able to understand the research and the jargon and being able to support them in how they can involve young people. So I have done some training with the researchers previously and we when I first started we did a question about their barriers and facilitators, to why they can or cannot involve young people or children in their research and that, for me was a really good starting point. It was within my first six months, I had a very clear idea of what the researchers thought could be the issues and what things they thought could be potentially helpful for them to do this.

So practically the meetings, we run them for three hours, they’re actually run in the university. And when we first recruited the young people I was quite conscious that some of the young people we work with may never have been to a university before because of their age and they may not even have people from their family who had been to university before. So I thought, ‘OK there’s going to be quite an alien concept for young people coming into a university. So we set up the first meeting with when we did our recruitment as a welcome meeting.

So we had a session which was about research and they looked through our research report. But we set it up in a way where we did some icebreaker activities. The young people got to know each other; they got a flavour for the kind of icebreakers and stuff we’ll be running. They got a flavour for the kind of what we mean by we want them to be involved in research.

We have had to kind of think about some things. So the way we set it up we’re hoping it was the best way possible but we always have this, and we’ve started in sessions having something what we’ve called the car-park. And the car-park is basically a piece of paper on the wall and we’re conscious that the young people what we’re doing is we’re sometimes taking project ideas to them and they’re not raising their own ideas at the point where the research is coming in. So we’ve got a car-park and if they’ve got any issues they want to raise we write them on there so, strategic issues they’ll go to we’ve got a public involvement steering group which is run, which is researchers and some practitioners here. But also they can put up some other issues about how the group is running and any operational stuff I’ll think about.

For researchers. I suppose my message for researchers would be don’t think you’re alone in doing this. There are people out there who are already undertaking involvement with the public. And speak to as many people as you possibly can. Ask them how they’re doing it. If this is your first time of doing it, ask them about the ways they’re doing it and what have they found has been the barriers for them and what has been the facilitators and is there anybody talk specifically about the project they want to do and is there anybody they know who’s an involvement co-ordinator who works with this public, because it is about targeting the right public. I’ve had three people recently come to me and say, “We want to do this involvement work with young people; we want an advisory group but we’re not really sure about how to do it and I’ve been more than happy to speak to them because I think it’s important for us to involve more people. So yeah I think if it’s your first time involving people look who else is out there, contact people, ask them how they’re doing it and just get as many tips as you can.

That’s great. One thing that’s just popped into my head there was, how would you convince people who are sceptical about involvement what would you say to them?

I would give them an example. I would try and maybe talk to them about the example I talked to you about today about how our researcher developed it up and how he’s changed his project. And there’s other examples like I suppose I would talk about the year six pupils we work with who didn’t understand peer pressure’ in the question. And I would give them examples where I would try and let them know that this has made a difference for the better and yes, these are just one or two anecdotal things from me. But these are real examples of how it has helped people yeah I think. It’s always difficult I think though because if you are sceptical and you don’t have any reason to do it, if nobody within your line management is pushing you to do it and you could quite easily do the research quicker by just doing it yourself yeah it’s a difficult one.

I had a question from a researcher actually because I do some training. And as part of our course we did some training with some researchers from outside the centre. I had a question about the diversity in the group and they were saying from the film it looks like the group is very white and there’s not that many people from ethnic minorities or other cultures. And I suppose, on reflection, I thought to myself, ‘Well yeah actually. I suppose this is something where young people kind of select themselves and the people who select themselves are mainly from sort of white Welsh, white British background. And when I’ve spoken to the young people about diversity it’s interesting how they say that they’re completely, that they feel that they are a very diverse group and I’ve said, “Alright then how are you diverse?” Just trying to get their idea of diversity and they said, “Oh well so and so’s really into this music and is a this type’ of young person, and so and so’s not. These young people really like; some of them like to do like exercise and activities; these young people don’t.” So they see themselves as diverse in a different way so what we would think of diversity, which I have found really interesting, because I thought, ‘Yeah I suppose you are. And as a group they don’t, they don’t think, ‘Oh we’re just young people’ they see each other very differently which I think is something we don’t, maybe as adults, think.

We would, if you met the group you might think, ‘Oh they’re not a very diverse group,’ and then I can think, ‘Oh yeah they are. And even things like they say, “Oh we’re into different things; we’re into different types of music; we’re into different types of fashion, where we are representative because young people are different on these ways as well.” So that’s been interesting.

That’s very interesting because there are sort of sub-cultures that are very important to young people.

To them

That don’t necessarily concern us as adults.

Yeah

Which is really interesting. And in terms of the ethnic diversity, and so I mean have you tried to recruit people from ethnic minority backgrounds in particular or?

Not in particular no. Because we do our recruitment through youth services and it goes out to sort of youth projects and youth development programmes, it’s kind of the young people are self-selecting themselves. I think it may be good for us to try maybe to, but I wouldn’t want young people to think that we’re recruiting them because they’re, because we want to make the group more diverse. And that again can be quite a contentious issue for me because I think if they’re interested as young people then they’ll put themselves forward. What I wouldn’t want a young people to feel is we’ve targeted your group because we want someone from your culture or someone from your ethnic background to be part of the group because then we’re more diverse. So yeah I think it’s something that maybe we should think about a little bit more.

I suppose one of the things which always comes out is people just don’t see the value in it. They don’t understand why you would ask, in our case young people, about your research and about your questionnaire and about your interview schedule. And I find that really difficult coming from a youth work background because I’m the opposite. I’m like well wouldn’t you because you’re not a young person right now; you’re putting together, say for example a questionnaire, but how do know how a young person’s going to read that or how are they going to take that questionnaire and we’ve done projects where we’ve gone out to primary schools as well and we’ve worked with year six pupils on questionnaires and we’ve completely had to change the questions. We had one question which talked about peer pressure and thirty-five out of the thirty-six children which were in our focus groups about the questionnaire, did not know what peer pressure was. And it was only when you stand back and we reflected and thought, ‘Well actually it’s a very adult term isn’t it?’ Eleven year olds are not going to use the word peer pressure so. And when we explained it to them they were telling us, “Well you could just say it like this and.” So I think it’s the value for some people.

So I think, yeah it’s interesting because sometimes I suppose the researchers will come and they’re at a stage where it is very first ideas.

So they have a lot more flexibility to take on what the young people want. Sometimes if you go in for a sort of, a call and they’ve put a call out, you kind of have to stay within the certain limits and parameters. But, I think it’s about initially letting the young people know what the limitations are and why we have the limitations and then feeding back afterwards and just saying, “This is what we’ve tried to do.” I think some of the things which became quite clearly when we started doing the quality assessments with the young people is that giving quite general feedback is not what they want, so researchers just saying, “Oh yeah it was lovely to meet young people and they’re obviously very knowledgeable and they told us a lot of things.” When the researcher comes back and says, “You said X and we did this about X.” So we’ve got one of our researchers who, he was developing up an intervention about smoking and one of the things the young people had said to him was, “Maybe you should think about, if you’re going to do this around the settings, you want to do it around sixth form or further education settings, is you should think about the access to tobacco because, although you can’t buy tobacco until you’re eighteen, if you sometimes take your tie off and so if then, you can go into the shop and they’ll sell it to you so maybe you should do something with the local shops around communities.”

And he’s actually added a whole element of his intervention around working with local shops to the sixth forms and doing mystery shopper exercises with young people in those shops to check from a research point of view whether it’s made a difference. So I think those specific feedback it’s a lot better for them. But yeah we do have times where the young people and adult agendas don’t quite align. I know we’re trying our hardest to [laughs], to make that, make it all as I don’t know what the right word is make it as understandable to the young people of our restrictions as well I suppose.

And my research dissertation, I interviewed some children and did some surveys with staff who had been involved with the forum structure, to kind of find out from them what they thought the impacts of involving the children in the forum were from both the children and stakeholders and from the staff’s ideas. So that was really interesting for me because I think for the first time I was thinking about the job in a more sort of, involvement in a more sort of academic way and thinking, ‘OK so everyone thinks that it’s a good idea and people are talking about there are some positives and this is why we do it. But it was interesting for me to kind of look at how people kind of frame involvement in local authority in the first place.

And it’s very much about the agency of the child and the fact that they can have a say. And then when I kind of talked to both the children and the staff actually about, so what did you get out of it at the end, it was very much more framed around the child as a developing child and the fact that this was very good for them because they learned all these skills and knowledge. And of course what I found was a little bit missing from the conversation was what impact they’d sometimes had on policy and on the local services. So people went into it with the best possible intentions but I kind of felt, ooh somewhere here the message has got lost or, there’s been some reasons why they can’t have as much impact which again made me start to think about some of the limitations to the involvement.

So some of the stuff we’ve done which is kind of the background stuff for recruitment and things, we actually had four young people who we were already working with before I came into post, and we asked them about recruitment and we said, “OK how do we recruit more young people of your age to be part of this group? What is good about coming to the university or what do you we need to do?” And there was a few things that they raised which were really important for us in recruitment. So first off they said, “You really need to kind of look to go to youth groups and other areas as well. Go to schools but don’t try and base it all on schools because sometimes you’ll just get head-boy and head-girl and you want to have a range of young people.”

Some of the stuff they kind of said to us is about how to promote it and they helped us develop all of our promotional materials, the young people, and we brought somebody in to work with them but they developed up all the material. So it was a little bit more engaging I’m hoping than what I could have put together.

They also made us aware of what we should promote. So they were saying, “You should promote things like if they’re coming into the university that their transport will be paid for and make sure like it’s paid for beforehand because they’ll be some young people who can’t afford to initially pay for their own transport and reimburse and it,” which is usually what’s done within universities. So we always make sure that we book their tickets and send their tickets to them in advance. And also they wanted us to promote things like, “Oh what are we going to do outside of the research side of it?” So we go on residential and we go on trips with the young people and they were saying, “You should promote that bit as well.” So make it clear to them that the aim of the group is for them to be a research advisory group but, also make it clear that it’s not just work I suppose was their benefit to it so, so yeah a lot.