Benefits of involvement
Belonging
Group members and their parents and carers talked about wanting to join eyeYPAG to meet other CYP with similar interests or experiences or finding this a benefit of being a member of the group. Facilitators also reflected on how the group had melded together so effortlessly. CYP talked about valuing how we work together, reflecting the work we have done as a group on our ‘shared identity’, as well as advising on research projects:
“[I like] meeting other young people who are also passionate about getting their voices heard and doing it in a way that we can all work together in a family-like way.” (YPAG member)
“Being able to identify as part of a group, where she has a voice, has been good for [my daughter]. It has also helped her to identify as someone who has a visual impairment and to recognise that she is not alone in this.” (parent)
Group members also valued the wide age range of the group, as did facilitators:
“I think some groups I work with, you end up splitting up the older and younger members of the group more. Actually, with this group… the older group members help the younger ones. So I think it’s worked really well” (facilitator).
Learning
Group members told us how the group had made a difference to them, particularly learning new things:
“I get to learn about different eye conditions and help take the research forward to help people with the conditions.” (YPAG member)
Knowledge and skills which parents and carers said their children had gained included:
- Understanding what problems children with eye/vision conditions face
- Appreciating how CYP can help adults design more meaningful and realistic research
- Learning to critically appraise other people's work and ideas
- Giving them the confidence to take on additional work and responsibilities (if and when they wanted to do so)
- Developing skills working with adults and children they do not know
- More confident about sharing their views
- Participating in a process with tangible outcomes
- Experience of working with others (adults and CYP of different ages) and independently
Facilitators reflected on both the value of sharing knowledge and teaching CYP and, conversely, how much they had learnt from YPAG members, both in terms of their perspectives on research and how to pitch their involvement:
“So from the very first meeting I've been so humbled really, by the insights and how well children and young people can talk about their experience” (facilitator)
“I have learnt so much from the children and young people. That for me, was the biggest learning experience here” (facilitator)
Impact: young people’s perspectives
In the focus groups YPAG members discussed the importance of feeling that they were making a difference to research:
“[The researchers need young people’s] point of view… because we're the ones they're researching [so] we have our say, and it helps them, it helps us, it helps everyone.” (YPAG member)
“[Researchers who come to the group] will build on the idea you've given… if you give an idea, they'll tell you maybe, why they can't do it, or suggest a better alternative using your idea or they'll just say ‘yes, that's a really good idea’” (YPAG member).
In terms of impact on CYP of being group members, in the survey CYP (n=10) were asked to rate their experience of the group in relation to the following statements :
Table 1: YPAG members responses to survey questions on experience of being a group member
During eyeYPAG meetings I feel that….
|
Always
|
Mostly
|
Sometimes
|
Never
|
My views are listened to
|
8
|
2
|
0
|
0
|
Things are explained in ways that I can understand
|
10
|
0
|
0
|
0
|
I’m able to ask questions
|
10
|
0
|
0
|
0
|
I can get involved in decisions about the group and how we work together
|
7
|
3
|
0
|
0
|
Information given before and during meetings is accessible to me
|
8
|
2
|
0
|
0
|
In open text responses, YPAG members said that things the group did well include:
- “They allow everyone to have a voice and make everything accessible to everyone.”
- “It’s a fun, interactive and very interesting group”
- “Even in lockdown, we've still been pretty good at working together and getting to know each other better, so it's not as lonely, and we know that our voices are valued more, and that people are actually going to listen.”
Impact: adult perspectives
All participating researchers reported some impact from the YPAG’s input into the research. This included changes to methodology, research protocols, recruitment and data collection tools:
“We have taken some concrete suggestions on board, and made tweaks to tests… It also provided helpful supporting material for at least one grant application and one peer reviewed paper”
“There were things that the group told us they wanted to change I had never thought about… It really opened my eyes and gave me a different perspective… it was incredibly helpful.” (researcher)
“[Involvement] makes it much more suitable for the children and young people who take part in the study … [and] that then just makes it more successful in the end, either in the numbers of people willing to take part, because it's an appropriate project for children, or having a better experience while they're taking part.” (researcher)
“I think it's actually changed, not the research, but me as well… learning what children or young people can say, how much they can give to research, has actually set me up quite early on in my career to make sure that I continue to [work with young people] to make the research better.” (researcher)
The feedback from researchers about coming to eyeYPAG meetings was overwhelmingly positive, with comments about ‘invaluable advice’, ‘insightful comments and suggestions’ and ‘excellent engagement’. This was echoed by funders:
“Children and young people can have very different perspectives and expectations of research and it is critical their voice is heard. They can have great insights that adults will fail to spot or think less important, but which might make all the difference when engaging their peers in research studies. However, their involvement is not only important in the design of research but also for the future of research as they're helping to shape the research (and researchers) of the future.” (funder)
They went on to consider success in terms of impact to research, as described above, and how, from their perspective, they had achieved their aims and aspirations when setting up the group regarding teaching, giving CYP a voice, and improving and informing research. Facilitators reflected on what they considered a success of developing a group informed by co-production principles; they started with open minds and high aspirations, but acknowledged that with such a young cohort (some aged 8-9 years old at the start) with little prior experience of research or involvement, that a ‘working towards’ co-production approach was required.
“They didn't have, a lot of… experience of being involved in something like this before the group started. So we had to work up towards that” (facilitator)
Facilitators discussed the group’s impact in terms of dissemination:
“It's not just changing eye research. We've done things like the podcast and things like that, we've spoken at conferences,…. a few of us [facilitators and group members] went to a Co-production Collective event and talked about our experience and what we've learnt about having meetings online. There's lots of interest in the group outside of just eye and vision research.” (facilitator)
Children’s voice and rights
As discussed in ‘Background’, CYP have a right to be involved in things that affect them, including research. Participants from all cohorts mentioned this.
“I wanted to help young people get their voices heard, especially in a healthcare environment. I thought that I could make a difference.” (YPAG member)
“It's incredibly unethical not to allow people to have a voice in how research that involves them is being undertaken” (researcher)
“In healthcare, we always have to stand up for children and young people, and I feel that has to do with them not having a voice and their parents not having a very loud voice. Whereas, other patient groups are bigger and more articulate” (facilitator)
YPAGs in practice
Most researchers who came to work with the group did so because they already knew about the group or had been told about the group by someone who knew them. Many came to the group in the planning stages of their research:
On-going involvement was encouraged, and several researchers worked with the group more than once and were keen to come back to the group later on in their projects. JM, a co-author on this paper, helps facilitate and was a co-founder of the group:
“[eyeYPAG are] my advisory group for my PhD.. [so] I’ve been working with the group since the beginning. I've had about four sessions with them exploring different parts of my project, and they've just been totally brilliant, helping me improve it.” .
Planning and support
Researchers and facilitators highlighted the importance of thoroughly planning sessions before coming to meetings. Researchers valued the support they had had from the group facilitators to do this.
“[The facilitators] have so much knowledge, and they are able to provide their suggestions in a constructive, collaborative way.” (researcher)
Accessibility
Researchers also valued the personal and practical experience of the group of having, or knowing about, eye and vision conditions and in research. In a group with a range of visual impairments and other access needs accessibility is also an important planning consideration:
“A challenge that you need to overcome for this group is the accessibility of the information that you're presenting. Even harder online, because you have no idea what device people are using or what their internet's like… and, most importantly, how much they can see. You really have to think ‘how can I make this accessible to everyone?’” (researcher)
Space for creativity
Alongside working with researchers, an aspect of eyeYPAG group members really valued was creative activity:
“I find it easier to learn things and also feel like my voice is being listened to when we do things creatively instead of just sitting there.” (YPAG member)
Creativity was also valued by researchers:
“We had an activity where we all drew what we think eyepatches should look like [using Zoom whiteboard in an online meeting], and I felt that that was really good at helping the young people to contribute what they thought… the creativity was something that I've not seen before and was really impressed with.”
Top Tips
Combined ‘top tips” from researchers and facilitators for planning a YPAG session include:
- Think carefully about exactly what you want to get out of the session and how to make best use of the time
- Present a very small part of the project and explore in depth
- Work with the facilitator beforehand and plan the session well to make it interactive and engaging
- Don’t just do a presentation and question and answer session: “Consider activities for children with all needs, to ensure maximum participation”
- Keep your presentation short so you have lots of time to talk about it
- Make sure you explain your ideas/technical terms clearly and in a way that young people will understand
- Be prepared to make some changes to your project
“Try and make it as easy to understand as possible… break it down… and really just focus on one single element, because it's quite difficult to cover lots of things at once. It takes time to explain, make it fun, and give enough time for everyone to express their views on what you're saying and input into it.” (researcher)
COVID-19
The necessity to move YPAG meetings online during the COVID-19 pandemic presented challenges including accessibility, keeping members engaged and the need to adapt quickly to new ways of working:
“When we met at Moorfields we used to make our meetings really creative, because that helps engage everybody and be interactive... Then COVID took that option away. So I felt quite nervous about how we were going to manage to keep people engaged… [but] we made some real progress with making things interactive and creative in online meetings too.” (facilitator)
“it was a bit nerve-racking moving online and … [making] sessions accessible to everyone in this format” (facilitator)
The solution was to reflect together on how best to make online meetings as engaging and accessible as possible, as it was a learning process for all of us. Our members co-authored a blog post and presented at a UCL Centre for Co-production network meeting on our learning (eyeYPAG, 2020). While many group members said that they missed the social and fun aspects of meeting in person, and that online meetings could be less interactive and engaging, the preference of most group members and adults going forward, was for a mix of online and in person meetings.
Young co-authors perspectives: lessons from the evaluation on how best to involve CYP in research
Jasmine: You need to capture children’s attention and be aware that they may understand a lot more than the researchers think, they may just need less complicated words.
Rhianne: Don’t assume that children are unable to understand - don’t speak to the parents only. Explain it to the children, because the parents often cannot explain it as well as the doctors and researchers.
Eleri: From the evaluation we learnt that you really must have a range of inputs. We realised that without young voices the research may not end up positively affecting young people enough. In addition, it is amazing opportunity for young people to get involved with. Along with meeting new people, young people learn so much about the healthcare system and get an insight into how it is run. Considering many people in YPAG have eye issues, it is wonderful for them to know how much work goes into ensuring eye healthcare is safe, reliable and incredible altogether!
Behind the scenes: facilitating a YPAG
As discussed above, support and facilitation was key to the success of the group for both young people and researchers.
Enabling factors included the role facilitation played in supporting researchers:
“Because we'd had a rehearsal [with the facilitator], it probably went better than it could have done, but even when you do rehearse what you're going to say to children and young people… there are always things that you assume would be really obvious… and you're seeing the blank faces, you're thinking ‘oh we could really have explained that better’.” (researcher)
Researchers also reflected on the shared agreements film co-produced by the group (Miller, 2021) which they found a really helpful way to understand eyeYPAG’s approach.
Creative and social activities were also a key element of successful facilitation, as discussed above, both to build group identity and make the involvement pross more engaging and fun. Funding for tablets also really helped to make documents more accessible for group members during in-person meetings, and sending documents out in advance for online meetings so that they could be printed or put on a device at home if needed:
“we made some real progress with the face-to-face meetings making things accessible. We got the iPads, we were really getting to know each other and doing the social things, went out for lunch and all that sort of thing” (facilitator)
Challenges included resourcing and administration:
“The administration side, the really boring side has turned into a challenge that I hadn't anticipated, but of course, having the group is just completely worth it and going through all the hoops, yes.” (facilitator)
While the researchers who took part in the focus group and survey were enthusiastic and engaged, others had taken more convincing:
“Some researchers are really keen and some researchers you have to do a bit of work on to convince them to give up their Saturday morning and that it's actually going to make their research better” (facilitator)
“I think with eyes and vision [research] there are so many sub-specialities….there's an impression that children maybe have one condition, wouldn't be about to speak another condition…. [but] children can definitely give a value to projects regardless of whether they have that specific condition, and we need to really bring that home as well.” (facilitator)
Future direction
After two years it was felt by group members and facilitators that a refresh of the group was needed. It was felt that this needed a good application process to both involve CYP with a range of interests and experience and to get an understanding of interests and access needs. More engagement was also needed within the hospital:
“I don't think as many families [coming to the Children’s Eye Centre] as we would like know that there are research opportunities. So we can do some in-house advertising as well” (facilitator)
It was felt important to involve current members in developing a recruitment strategy and materials. In addition, the facilitators discussed the need to think beyond the YPAG model and consider other ways to involve CYP who may not be interested in, or able to, have ongoing involvement or come to meetings in a hospital (e.g., through working with schools or services). But thought was also needed about how to integrate new members into the group, and how existing group members could support or mentor new ones.
Finally, another important challenge for facilitation is staffing. The lead facilitator (LMB) left for a new role soon after this evaluation was completed, and for almost a year afterwards there was nobody with dedicated time to take over this role, meaning that other facilitators had to manage this in addition to their regular jobs. So often YPAGs, and public involvement more generally, rely on one or two people who take on the role because it is something they care about with little or no funded time to do this and/or a lack of job security. When people leave this can then create loss of knowledge and continuity.