Hayley
Hayley has been coordinating the involvement of young people in research approximately three years.
Hayley works as an involving young people research officer. Ethnic background: White Welsh.
More about me...
Hayley is an involvement coordinator at a research centre in a university. She previously was a youth worker, but moved into involvement in research after completing her Master’s degree for which she had conducted some research on the impact children and young people have in forums set up to aid service development. She found that her participants didn’t report the impact the young people had on policy and local services. This got her thinking about the limitations imposed on involvement by the ways in which systems and structures are set up.
In her current role, Hayley aims to facilitate the involvement of young people in research. She draws on her background in youth work to try and ensure it is an engaging experience for them and not ‘too boring or too schooly’. She also has to support researchers in involving the young people and evaluates the experience from the perspective of the researchers and the young people. An important part of her job is ensuring that all necessary policies and procedures are followed. These include complying with child protection and other university policies.
The young people Hayley works with are aged between 14 and 21 years. Although they are mostly white and from South Wales, they believe themselves to be a diverse group. When Hayley discussed the issue of diversity with them, they responded by saying ‘We’re into different types of music. We’re into different types of fashion. We are representative because young people are different in these ways as well.’
They meet on Saturdays in the early afternoon to suit the young people’s schedules, and the meetings last for three hours including a lunch break. The young people are given vouchers to compensate for their time and some of them have shadowed researchers during data collection. They can put their involvement on their CV and Hayley has provided references for some of them. The group often gets invited to attend conferences, but that this often can’t happen because they take place during school hours. Instead, they decided to make a film to promote the group and tell researchers about their work without having to be there.
Hayley said that involvement for her is a two-step process. It’s about giving young people the opportunity to voice their opinions and bring their experience and knowledge into the research arena. The second part is about how researchers then listen and make changes based on it. She said that good involvement involved keeping the young people in the loop, feeding back to them and not just taking information from them. Hayley would encourage researchers who are new to involvement to look seek advice from others who are already involving people.
The personal benefits of involvement for the people who get involved are important but this should not be the main goal.
The personal benefits of involvement for the people who get involved are important but this should not be the main goal.
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.
Hayley’s team got a group of young people to advise on how to recruit other young people and what would make it attractive for them.
Hayley’s team got a group of young people to advise on how to recruit other young people and what would make it attractive for them.
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.
Hayley’s young people’s group see themselves as quite diverse, but they are mainly white. But deliberately targeting people from different ethnic groups might feel tokenistic.
Hayley’s young people’s group see themselves as quite diverse, but they are mainly white. But deliberately targeting people from different ethnic groups might feel tokenistic.
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.
It was only when they talked to young people that researchers realised a question about ‘peer pressure’ did not make sense to them.
It was only when they talked to young people that researchers realised a question about ‘peer pressure’ did not make sense to them.
It was important to give young people feedback about the impact they had on a smoking study. But it’s also important to be clear that not every suggestion can be taken up.
It was important to give young people feedback about the impact they had on a smoking study. But it’s also important to be clear that not every suggestion can be taken up.
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.
Hayley describes how young people and researchers assess the impact of involvement. Young people understand not every idea can be used but appreciate it if researchers are honest about this.
Hayley describes how young people and researchers assess the impact of involvement. Young people understand not every idea can be used but appreciate it if researchers are honest about this.
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."
Some new evidence is coming out but Hayley feels the focus is still too much on whether people are involved rather than how they are involved and what difference it makes.
Some new evidence is coming out but Hayley feels the focus is still too much on whether people are involved rather than how they are involved and what difference it makes.
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.
Hayley uses her youth work skills to make meetings engaging and ‘not too schooly’. She describes some practical strategies for making them inclusive.
Hayley uses her youth work skills to make meetings engaging and ‘not too schooly’. She describes some practical strategies for making them inclusive.
…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.
Hayley’s advice is to realise you’re not alone and to learn from colleagues about their experiences of involvement. Good case studies might help convince sceptics.
Hayley’s advice is to realise you’re not alone and to learn from colleagues about their experiences of involvement. Good case studies might help convince sceptics.
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.
Involvement is now part of the induction programme for new researchers at Hayley’s university and has become part of the culture.
Involvement is now part of the induction programme for new researchers at Hayley’s university and has become part of the culture.
Researchers may worry about the cost and time needed for involvement, but may also find it ‘daunting’ and feel anxious about doing it in practice.
Researchers may worry about the cost and time needed for involvement, but may also find it ‘daunting’ and feel anxious about doing it in practice.
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.
Hayley’s work as a PPI coordinator includes both expert facilitation and practical issues such as health and safety and dietary requirements. Her background as a youth workers helps.
Hayley’s work as a PPI coordinator includes both expert facilitation and practical issues such as health and safety and dietary requirements. Her background as a youth workers helps.
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.
At the NIHR INVOLVE conference everyone is keen on involvement. Hayley feels she should promote it to those not already on board and explain how to embed it culturally.
At the NIHR INVOLVE conference everyone is keen on involvement. Hayley feels she should promote it to those not already on board and explain how to embed it culturally.
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."