This interview focuses on working with young people in a tricky year when it comes to participation. We asked Emma how RCPCH &Us have managed to carry on with engagement activities since Covid…
Adapting and engaging in a pandemic
Emma: We had to look at all of our projects and decide which ones are appropriate to carry on, because we had some that were about very sensitive topics that in-person would have been challenging, and would have needed a lot of support and aftercare – for example complex respiratory illnesses. We looked at those and thought, you know, what, there’s a pandemic going on, which includes respiratory illness, now’s not the time to be phoning people up or talking to them and saying, ‘what do you think about this?’ and ‘what you think about that?’ First we did a wellbeing assessment on our workstreams and agreed which ones we were going to park for a bit, based on a welfare context. Then we spoke about what the missing gap in provision might be, because everybody is going to suddenly do everything the same and we don’t want to duplicate. We actually didn’t go as quickly as some of the other organisations to put out loads of new children and young people-focused information about COVID. What we did was pull together existing information on COVID and put it into a place that was easy and clear for families, parents and children and young people to see.
We wanted to give children and young people a meaningful role and we had to be creative
One of the things that we wanted to do was give children and young people a meaningful role. We asked: what are the gaps? Something that came up from paediatricians was that they were really worried that children and young people wouldn’t be going to their regular appointments anymore, so could we create a child health diaryfor them? So we did, and that’s still getting downloaded now, which is really cool. It’s something a bit more creative for them to write down their questions or things that have happened that are good. A doctor came to us and said ‘we want to thank our children and young people for taking part in the covid effort and not coming in and not playing outside, so can you create an E-card?’ So we created e-cards for thank you and birthdays, and last month 5,000 of those were viewed.
We picked up on children’s and young people’s concerns
As time went on we worked with lots of other groups, virtually. Lots of Teams, Zooms, and all that kind of stuff, to find out: what’s happened for you with health during COVID? What are your appointments like and what are you missing? What’s the information like? We picked up concerns from children and young people about the fact that COVID information wasn’t targeted at them. It was for adults. It also wasn’t giving a positive message about children and young people, so they were seen as the problem rather than part of the solution. There were also significant gaps forming around mental health support. That led us into a couple of new projects focused on COVID, but specifically from children and young people’s points of view. One was about mental health in a crisis, where we wanted to children and young people to tell us where they’re getting their mental health support and where are the gaps. Another one is working with young people to try and get a press conference for young people, because they’re not allowed to ask questions at the government press conferences, you have to be over 18 – excluding a whole group from having their questions heard or having a role. So we’ve been working with other charities to call for a press conference to answer questions from children and young people.
We got young people involved in reviewing evidence on patient experience of COVID
Finally, we realised that there were thousands of studies being done on COVID. The RCPCH had clinicians coming together to review which studies were being published on children and COVID, which got me thinking that actually there was also thousands of studies being published of what young people had said. Lots of charities were asking their children and young people about the impact of the pandemic, and then publishing the results. And we just wanted to give young people a chance to also do what the adults are doing: so if doctors can review scientific journals about COVID, young people can review a patient experience of COVID. We pulled together a group of a small group of young people and over 12 weeks, invited them to look at about 20 different published studies of around 60,000 children and young people’s voices, say, from cancer patients, mental health experiences of young people, children and young people or young carers, across the UK.
And they did what we do in our world – they conducted some thematic analysis, they explored the key trends, they developed them, they then created eight different topics that came up, and they slotted in the data, with a ‘for’ and ‘against’ for each topic. Topics included things like mental health and family dynamics, employment, education. They wanted to make it make a difference to the NHS, and the NHS at the moment are writing recovery plans on how to how to restart the NHS. So they’ve boiled all of that work down and they volunteered over 100 hours doing this project over about three and a half months. They’ve turned the three priorities they have developed for the NHS into posters. The posters include the priority, the problem, the solution, the impact, a quote and some stats. Since launching, the recovery plan priorities have had about 28,000 Twitter impressions. You can read more about the COVID Book Club findings online.
The work has elevated the voice of children and young people – and made people understand they have a lot to say
Emma: We also hosted a debate with doctors about whether paediatricians should be thinking holistically or medically during COVID, because for children and young people, it’s about their mental health as well. That project just feels so different from what we’ve done before. We had to really think through safeguarding and wellbeing, so we didn’t overwhelm the young people who led it. This project very much felt like we were actually paralleling something that was going on in the academic part of the college, and doing the exact same thing, but for children and young people, which felt very different. It has elevated children and young people’s ability, both in the college and in the sector. And it’s really made people understand that they have got a lot to say, and they understand what’s going on, and have a lot to offer.
So on the whole, we’ve managed to find a way or find a tool or find an approach that makes it fun and entertaining and interesting and focused on them rather than the topic sometimes.
The good thing about having to change our work is that we’ve been more connected to RCPCH wider internal projects. The benefit of voice has been seen in a different way. And for us, we had to take that opportunity and run with it – we’ve had 200 new children and young people involved during the COVID pandemic, who have between them completed over 330 hours of volunteering.
Voices are being heard and the professionals are engaging more
Emma: We give advice to people that are starting out on a project or want to talk about PPI [patient & public involvement] and I’ve had so many more requests over the last three months for people that want that advice. And I think it’s because children and young people’s voice is now seen differently. They’re really seen as being integral. There’s so much further we could go, there’s a million other things we could be doing that are even more innovative and creative, and increasing their reach, but you’ve got to start somewhere.
Barriers to participation – too much time online but also digital exclusion
Emma: There’s different barriers and challenges according to which audience you’re coming from. For children and young people, one of the challenges that they’ve said to us is that it’s really overwhelming that everything is online. We’ve really got to understand that because whilst we think we’re doing something fun and exciting, and it’s online for an hour, they’ve already had school online, for some of them health appointments online, mental health appointments, and counseling online. They’ve had zoom calls with friends and family, they’ve tried to keep fit online. And then we’re coming at them with another online thing. Another challenge for them might be: maybe I haven’t got somewhere confidential and private to do online stuff where people aren’t listening in. Or maybe I haven’t got a good device. So we’ve really looked at the challenge and been as inclusive as possible. You can join our online sessions on phone, you can do it on WhatsApp, you can join via video, you can have no video. You can use the chat, or you don’t have to use the chat, you can do it by email if that’s better – it’s all your choice. For us it’s a challenge because we’re having to run four or five different tech options for a one-hour session. But it’s about understanding that not all children and young people want to be on video, not all children and young people have got a device that lets them Zoom. Maybe all they’ve got is a landline, which means they can phone in.
The challenge for participation and engagement is don’t get complacent and think that your games and activities can all work with everyone seeing everything, because they can’t. It’s about inclusion. And that comes from children and young people saying: I might be sharing my laptop with five other people in my house, so I can’t use Teams at the same time, but I will phone in because I’ve got a mobile. We’ve had to really think it through. Another challenge is always remembering whatever you’re talking to children and young people about might be overheard. So don’t put them in positions that makes them disclose stuff that actually might not work well in their family environment. We’ve worked hard to create safe spaces, and to work with each group that we’re talking to, to make sure we understand what their space is like at that moment. Because you can’t start a conversation about money and poverty, when their parents are listening and they might feel that they’re being judged or that the young person feels like they’re judging their parents or living environment.
How can we make it fun? How can we make it inclusive?
Another challenge has been how we can make it feel fun. If you’re using devices for presentations, or for school, we don’t want to be like school on your computer. In the back of our heads we’re always thinking let’s not overwhelm our children and young people, they don’t have to come to the project if stuff’s going on. So we’ve really been conscious about trying to understand what people might be going through. And then to think about things like don’t drink or eat when you’re on camera, because not everyone has got enough food in their house. You would do that in the meeting room, but if we were in the meeting room, we would have given them food and drink. Whereas for us on camera, we’re being really careful about stuff like that. So I think that there’s some challenges. The one that we’re looking at now is where we would normally do community outreach to reach people who aren’t connected to any projects. That will be a challenge and we need to think about how best to reach out to that cohort. But no challenge means that it’s the end and we’re not there yet! It just means that I need to think harder about how I’m going to get past it.
I knew the COVID studies review would give young people a platform that they’ve never had before. But how can you possibly do that safely? If I was in the room, I’m able to see their visual cues, I’m able to unpack things over lunch, I’m able to stop the session and do something entirely different. I spoke to a friend who’s a youth worker and she said: ask the young people, they’ll tell you what works for them, so we did, and they knew all the answers and helped shape the project throughout. In the end they decided that we couldn’t do all of the studies. We found 33 but they said that they could only manage a certain number but that’s cool. At every stage I just kept checking in with them. They will tell us what works for them. It’s co production even in that sense.
What tools can we use for remote working with children and young people?
The first thing I would have to say for anyone about to do is go and talk to your information governance manager. Because whatever you think might be able to be used might not be able to be used for lots of different reasons. One thing we used is Trello , because the young people said for the COVID studies review they wanted somewhere where they could collaborate on documents, but we can’t use Google Docs because of a GDPR issue. I’ve never used anything like that before with young people. It’s so good. They could ask questions and comment on each other’s documents. But they could also see really clearly what was happening at what stage and what they could add to if they had a bit more time. I’ve been trying to find a voting app online, because that is key to so many of our projects, to be able to anonymously prioritise five or six different things. And Menti allows you to do that. You don’t have to put any personal data in, you just get given a code. And then they’ve got lots of different voting tools that you can use. Having a virtual whiteboard is really important as well, like JamBoard. But going back to inclusivity, if we’re using JamBoard, and I’ve got two people that phoned in, I will take a screen grab of it and then WhatsApp it to them so they can see it building. And it’s keeping that in mind as well, to make sure that you’re not inadvertently excluding someone because they haven’t got the same software in front of them.
Overall, I think we keep adapting, learning and changing to the meet the needs of children and young people engaging with us through the pandemic, as we learn new digital tools or approaches and learn from the group. It’s been an opportunity to really relearn everything you have always done and to reflect, update and adapt which has been hard at times but so rewarding when you see the outputs and outcomes.
You can read about the RCPCH & Us collaboration with LSHTM on ‘This Sickle Cell Life’ here.