Episode 21: 'CHILD HEALTH LITERACY' with Professor Lucy Bray

Professor Lucy Bray is a Professor in Child Health Literacy in the Faculty of Health and Social Care at Edge Hill University in the UK and the Children's Nursing Research Unit at Alder Hey Children's Hospital.

Professor Bray has worked within acute children’s nursing for over twenty years, specialising in children’s surgery.

Her research interests include the education, information needs and preparation of children, young people and their parents for surgery, procedures and interventions. Her work explores how children and young people can be provided with information in a meaningful and timely way.

The majority of Lucy’s research is based on qualitative research approaches and uses innovative methods which aim to facilitate the involvement of children and young people.

Follow Professor Bray on Twitter here.

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Theme Music - ‘Mountain’
–
copyright Lisa Fitzgibbon 2000
Written & performed by Lisa Fitzgibbon,
Violin Jane Griffiths

Podcast artwork thanks to The Podcast Design Experts

Transcript

Lucy: 0:00

We completely underestimate often what children know. A lot of the information that we protect children from is often through trying to do good. Through often as adults, assuming that we're acting in children's best interest that we don't want to worry them, we don't want to call them upset. But often what happens when you do that is you you exclude the children fro having the opportunity to joi you on a journey and to und rstand actually what's hap ened. We know from quite a lot of work that if you don't give t e opportunity for children to h ve that conversation and have th t information, they'll fill the gaps in themselves often with information that isn't right. What might have been somethin quite simple that's been kind of protected and not shared. Chi dren will often think tha there's something far worse h ppening or something very d fferent and they'll fill th t with their own imaginations. t can lead to a lot of misinfor ation and actually m re anxiety than would have been aused in the first place may e through having those conversa ions with them.

David: 1:08

Welcome once again, to the Not Mini Adults Podcast, Pioneers for Children's Health Care and Well Being. My name is David Cole and together with my wife, Hannah, we are the co founders of UK children's charity, Thinking of Oscar. This is the ninth episode of our second season. If you've ever had a child who has had to go into hospital to have a procedure and you've not necessarily understood or known what to say to them. You felt equally that they haven't been given enough information about what's going on, then this is the episode for you. Today we are joined by Professor Lucy Bray. Lucy is a professor in child health literacy in the Faculty of Health and Social Care at Edge Hill University in the UK, and also works at the Children's Nursing Research Unit at the Alder Hey Children's Hospital. Professor Bray has worked within acute children's nursing for over 20 years, specialising in children's surgery. Her research interests include the education, information needs and preparation of children, young people and their parents for surgery, procedures and interventions. Her work explores how children and young people can be provided with information in a meaningful and timely way. The majority of Lucy's research is based on qualitative research approaches and uses innovative methods, which aim to facilitate the involvement of children and young people. We had a truly wonderful conversation with Lucy, and we hope you enjoy it as much as we did. Lucy. Hi, thank you so much for joining us on the Not Mini Adults Podcast. We're so delighted to have you on.

Lucy: 2:46

It's an absolute pleasure. Thanks so much for asking. Thank you.

David: 2:50

Welcome. Well, as you know, one of the things that we try to do is to get our current listeners to give us recommendations of people that we should talk to and you were one of those people from Don Rabanne who's we've been, you know, working with for quite a long time now. He was actually our first person that we spoke to on the podcast. It was a long time ago, that we did it. But he said so many great things about the work that you're doing and the importance of how that links to, I guess, to his work. Empowerment, I think is one of the things that we're going to talk about. Is a theme that kind of runs through a lot of the conversations that that we have. You're, I guess, looking at it from a slightly different perspectiv, and we'll talk about that as we move forward with health literacy and how that was. But I think just to begin with, if we could just kind of, maybe take you back a little bit and say. How did you get to be doing what you're doing? How did you start working with in paediatrics and child health?

Lucy: 3:51

Okay, so I suppose I was always very interested in working in some way with children, young people, even from school, I knew that that was what I wanted to do. I'm not sure why but it always was something that appealed very much and considered teaching. Did some placements in kind of primary schools and thought maybe not for me. Then spent some time shadowing medical colleagues and although it was very interesting, didn't feel that it really matched what I could see myself as doing. So went into a nurse training. So was one of the first kind of degree cohorted nurses when they were looking at nursing becoming a degree based profession and absolutely loved it from day one. It was a four year course and did a range of placements in lots of different settings and never really looked back. It's always felt such a privilege to work with children, young people. I think from day one, the ability of children and people to cope with quite adverse circumstances is pretty amazing to see. I think they put adults to shame. I think when you see them cope with really, really difficult circumstances and how they do that. So worked with children having operations, so plan surgeries, some minor surgeries, some quite major kind of surgical procedures. Was struck from quite early on, I suppose I've always been one of those people that wondered why, which can be quite annoying at times, probably. But so it's the why is it like this? or are how can be in a situation that this happened? Children, young people coming for operations and procedures, that really within health services are pretty minor, day to day procedures. They're not the big procedures that we might invest a lot of time in preparing children for. Quite minor kind of day surgery procedures and was struck by the fact that many of these children, young people didn't quite know what to expect. So often, when a child is admitted, they will be weighed, they'll have anaesthetic cream for time, someone will come and talk to them, the anethetist will see them. But actually, there seems quite a gap in the speed of the admission and anyone really having the time to sit down and talk to the child and the parent about what was going to happen. What that would look and feel like for them. Was really interested in how we could do that. Talking to parents, they would say how some of in some cases that struggle to know what to say to their child. So we would have children admitted who have been dressed in their school uniform, and drip into the hospital in their car and will suddenly putting the gown on and was having an operation because the parent hadn't wanted to upset their child by telling them that they were going to have an operation. They didn't want their child to be worried. So absolutely best interests at heart. But actually, that created problems then when that child arrived at hospital, obviously what a shock to them suddenly, you know, be having an operation, or a procedure. There seemed a real area there for improvement and we could do things better. So at that point, was looking at doing some kind of further education. I've always quite enjoyed studying, quite enjoyed reading and finding out things we dont know, a lot of people below Oh, no. But I really, really enjoy that kind of aspect. Started to look at the evidence around how we prepare children for procedures. What are their information needs? So what does the child who's come into hospital for, say, a tonsillectomy? What information do they want to know? We know what they are provided with but what what do they actually want to know. I was really struck by a lack of evidence that we had lots of information from health professionals, we had lots of information from parents, which of course is really useful. But no one had actually asked children themselves. So what do you want to know. So one of my first projects was looking at children who were coming in for minor procedures. What their information needs were. These children, were telling stories of, the hospital would send out a leaflet to their parents, nothing specifically for the children and their child would try and read it to try and work out what it meant the language wasn't very understandable. Children would say things like the parents, like well, I think he's off his food a bit, because he hasn't been eating really well for the last weeks. Then you turn around and talk to the child they would tell you how they were practising not having breakfast so that when their operation came, they wouldn't be hungry in the morning. The parent wasn't really aware of that. But the child had read something about fasting, and was working through, you know, developing their own strategies for kind of coping with that. There was a real lack of evidence of children actually informing what we do for those children and young people before they come into hospital. That interest kind of continued, continuing to work as a nurse. I always felt very passionate, to remain kind of clinically grounded. To remain working with children, young people as a nurse, and that really informed a lot of early research that I was involved in. To actually see a problem in practice and be able to work, work from practice in the children up to develop a project. I think always means that hopefully the work that you're involved with makes the most difference. Then expanded that work and ended up doing a PhD, was approached by my master's supervisor who was Professor Peter Calorie who was fabulous and approached me to say, did I want to do a PhD. Which seemed the strangest thing because I didn't know anyone who'd ever done a PhD. I didn't really know what one was. Ofcourse, how could I possibly be capable of doing a PhD? That's for like really clever people. So embarked upon a journey of part time PhD while working clinically and within the hospital. Then I think that project focused on young people who were having surgery for long term conditions. So these were children, young people who've been born with a condition where surgery was always going to be on the horizon. Surgery was always going to be a possibility. At what point, the decision was made for that surgical procedure. This this was a procedure for children who needed a continence dermis or needed management to manage their continence into adulthood. So this was a an operation that was done that required lifelong kind of management. Talking to those children, young people about how much they had understood about that decision how much information they'd had about that. Whether their expectations of it had matched the reality of living with it. Often, some of the young people would talk about that, that they hadn't really understood what it was and therefore living with that afterwards felt quite hard. Because they felt that they hadn't really signed up for everything that was involved for them. Whereas other young people who've maybe been a little bit more active in that decision and fully understood what it involved, felt happier with the outcomes. So really started to see this link between children having information and knowledge, being able to then get involved in those choices and interactions and consultations, and how that had impacted them. Change the outcomes, so how that could make them have a better experience. Adapt to life with a condition or a treatment better. You said right at the beginning about empowerment, and really that's the thread that runs through. Unless you really have information, and know what's gonna happen to you, because most of the time, it's the children, the young people that something is happening to. It makes it really hard to take ownership of whatever that is, whether that be treatment or a disability or a long term condition. Unless that happens, then it then it makes it really hard for those children, young people. After doing my PhD, there was a part time position that was advertised within academia, It wasn't really anywhere that I had to see myself working. I loved working on the ward remained really passionate. Then came to a little bit of a difficult point where I had to make a decision that when I was in charge of a ward, it was really difficult when I wasn't there enough. When I was working at the university, there were things that I couldn't do properly because I was on the ward on those. I had to make the difficult decision to leave clinical practice. It was a really difficult decision because I did love that job. But I've thoroughly enjoyed working within the university. It's helped kind of develop a programme of research, really, I suppose around children's information. So probably worked for maybe 10 years on various projects, looking at children and young people and what they knew about conditions, what they understood about procedures, and hospitals and who nurses are and all those things that we can sometimes take for granted. It was only really when I was fortunate to be promoted to a professor, where you have to choose your professor name. So you get to choose what you're a professor in. I spent a lot of time kind of reading around health literacy and was very interested in the notion of it. Actually looking back, that has always been the frame for my work, but didn't necessarily label it as such. It felt like it was kind of always meant to be but at the beginning of that journey, I hadn't really heard of what health literacy was. It was just, I was responding to kind of like identified needs in practice, I guess things that I felt could make a difference to children and young people. Things that children and young people were saying that was missing and lacking and that there was a need for. To arrive at the point of being associated with health literacy feels feels like home, it feels like work was always heading there.

Hannah: 14:18

It was like you had to do that work to find the label. Did you?

Lucy: 14:22

Yeah,

Hannah: 14:22

Theres nothing you could aim for, because you were the person and I appreciate that you will have peers around you and other people that you learn from, but you've been part of spearheading that. I think it's fair to say.

Lucy: 14:35

Yeah, so and I think you from every piece of work you do from every interaction that you have with colleagues. I've been lucky to work with some amazing colleagues over the years. Every interaction and project that you work with you learn something from that and you take it on to your next one. Every interview that I've done with a child and a young person or a parent you learn from. It is a massive privilege to go into families homes and them tell you about their experiences of something, which is often been a difficult, you know, difficult occasion or a difficult event in their life. It does feel such a privilege and you take something from every one of those interactions and every one of those projects and it builds together as a whole, I guess. So I feel really fortunate, but never at the beginning of being a children's nurse would have thought that this was where I would end up. But yeah.

Hannah: 15:31

You reminded me of ,its an Oscar reference, actually. So when we were in hospital with Oscar, which, as you probably know, was a short period of time. Obviously nobody expected that we would be leaving him there. Holly was picked up by a friend and neighbour and brought in and we asked to speak to the psychologist as to what we should, what should we say to her cuz I had no experience with this obviously. But I knew that what we were going to say was going to be really important. So we were told about using really clear language. Don't say he's fallen asleep, don't say he's not coming back. You know, just be really, really clear over on the language that you use. So we did that. Obviously, it was difficult, but she heard it. Then that was on the Thursday morning, we had to talk to her. Then on the Saturday, thing is she was three and three quarters. So we still had to be at ballet at 9:30 on Saturday morning, but it was easier just to keep everyone going at their routine. I remember driving out of the driveway and she made some passing comment on what's easier without Oscar being around or something. I remember slamming my foot on the brake and explaining in very, very clear language that that was, you know, that she really didn't mean that. She never ever got muddled on that again. David and I have been able to follow the path that we have followed subsequently, thanks to counsellor who came into our life really soon after he died. She was just, Maui was absolutely amazing. She helped us sort of carry on with that. With that learning that children understand so much more than you appreciate. The only thing you need to do is moderate it. Don't answer the question that you think they've got, answer the question that they ask you. So that means that you can always keep it within the scope of their understanding. The reason I said this now, because this story is about you and the journey that you've been going on. Whenever people are talking about a situation or you know, other events that happen in people's lives, that might be difficult and they don't want to tell their kids about them. I've always just learned so much from, if Holly can understand death from three and three quarters, you know, then and she's not unique. It is helped me spot other things that other children are understanding and communicate with them differently as a result. I think the whole underestimating kids and young people thing is we accidentally do it and yet, there's an awful lot of wisdom comes out of children and young people's minds isn't there.

Lucy: 18:29

There is absolutely, and I think obviouslythat's an example of one of the most hardest bits of information to share. I can'timagine doing that. That is really, really hard. But you're right, we, we completely underestimate often what children know. A lot of the information that we protect children from is often through trying to do good through often as adults, assuming that we're acting in children's best interest. That we don't want to worry, then we don't want to call them upset. But often what happens when you do do that is you exclude the children from having the opportunity to join you on a journey and to understand actually what's happened. We know from quite a lot of work that if you don't give the opportunity for children to have that conversation and have that information, they'll fill the gaps in themselves often with information that isn't right. What might have been something quite simple that's been kind of protected and not shared. Children will often think that there's something far worse happening or something very different.They'll fill that with their own imaginations and it can lead to a lot of misinformation and actually more anxiety than would have been caused in the first place maybe through having those conversations with them. But I think you're right Hannah. It's so important to be led by children. So rather than I think sometimes what can happen in really busy constrained health services is that we provide information, we give information and therefore the child's got the information that they need. But there isn't always the time to go back to that information at a later time. There isn't always a time to say, okay, so. So tell me what you understand about that now and to check back what they've gained and what they've understood. So we know we've been doing some work looking at kind of like prep sheets, which are questions for children and young people to ask. So rather than being told this and this, their questions that they might want to ask of health professionals when they're having those interactions. I think that just helps. Helps children know that they're welcomed to ask questions, because sometimes when in kind of busy health services and busy clinics. Parents have got agendas. Parents have got lots of questions to ask, understandably. The health professionals got lots of important information to provide. Sometimes it feels too busy for the child to ask something that seems quite simple and might not be the best question. Sometimes they can kind of stay quiet and not feel able. So by providing something it legitimises that actually you're here, you're a really important part of this, you are the most important part of this conversation. Ask the questions that you want. I think you're right, just thinking about what you were saying then that we assume there's so many assumptions made about children's competencies, in that we assume that a five year old is too young to understand, but a 13 year old will be fine and will know what's happening. So actually, a five year old, is probably very capable of understanding, if it's provided in the right way, and discussed in the right way. And a 13 year old, it might be the first time they've ever interacted with health services ever. So actually, they might be less able to understand and navigate what's happening. But an eight year old, who's had lots of contacts. So we make assumptions all the time we make assumptions that parents will know how to have conversations with their children about procedures. I mean, this is this is my research, my whole research field, it's my life for 15 years. If my children need to go for a procedure, it's quite difficult to know, when do you say, what words do you use, because you really don't want to create extra anxiety for them. You want to make sure that they're prepared and that they know what's going to happen. It can be really hard. But I think, you know, there are so many assumptions made. So parents might assume that the health professional will talk to their child about what will happen. Health professionals might assume that parents have had those conversations. So you can be left with a bit of a hole when no one's providing the information. There's some amazing resources out there. But we know for some of the work we've done that people that aren't necessarily actively go and look for information. They want to have information provided for them, they want to endorsed by the person that they're going to see. There's lots of points along the journey, that things can go really well Or that a child can be left uncertain and a bit anxious and lacking in information.

Hannah: 23:32

How do you implement that change? Because we understand how constrained the health services anyway. Even if money were no object is still a mammoth organisation. So it's never going to be easy. When you talked about the prompts, for example, is that made available to the child via the appointment setting process? ,

Lucy: 24:00

Yeah so I think, from experience, you can kind of implement the best kind of health professional information, training ,speech, developing young people as much as possible. That will work to an extent. But I think my passion is that children and young people are empowered to take some , not responsibility . But it's expected that they will they'll have access to information. So children don't exist in a bubble. So if there's health services, we want them to come informed and prepared and we know what's going to happen. It's not just giving a child a leaflet. It's bigger than that, it's recognising that the parents know that it's important for the children to have information. Its health professionals recognising that even a young child should be involved in that. Increasingly health literacy and kind of my work is focused on empowering children and young people. So it's making that information visible. It's making that information accessible. So like the prompt sheet that we've made. We've created animations in the past, working with children and young people. So children and young people very much telling us what they want to know when they come. So these are the things that is important to include. I think it's so great working with children, young people, because if the environment right and the relationship is there, and it's trusting. They will tell you exactly what's right and what's wrong about the work that you're doing. I think any of my work has always been more, you know, the better for children and people saying, well, I wouldn't do it like that, I think you need to do it like this. So we've been able to change and adapt what we've created. Looking at resources that are created for children and youngpeople. But we have found through some of the work that we've done that when we focused very much on children, young people, the parents have gone. Yeh, but what about us and so we've actually had to then go and find additional funding. Then create extra information for parents, with children and young people always being the heart and an hour kind of primary consideration. But recognising that parents also have information needs, that when they come, they might feel a bit disempowered. Might not be able to feel able to ask questions. I know I'm sure all of us have come home from an appointment and thought. Oh, I forgot to ask this or they said something about medication, but I can't remember what it was that they'd said. Because they're really often very busy interactions. All of our work is child centred, but recognising that kind of wider system that also needs to be in place in order for that child to be able to use information that's created for them, I guess. I'm not sure if that answered your question. I'm not sure if that went off on a bit of a tangent.

Hannah: 26:55

That was good to Im gonna hand over to DC as he's been elbowing me.

David: 27:01

I was thinking when you were saying, what about us? What about us? It just reminded me of Stuart and I know that Hannah was thinking it as well. We were driving along, slightly off topic. So apologies for anyone listening to this. But we were driving along in the car. We've got a 10 year old, a five year old and a two year old. I remember us having a bit of a kind of vote as to whatever it was that we were going to do. We asked a five year old and a 10 year old, and they gave us a vote. And suddenly the two year old pipes up what about me?

Lucy: 27:27

Absolutely. Yeah, absolutely. As soon as children have a voice at any kind of table or any kind of choices and decisions, then they're lifelong skills in a way. So within our health system as it is we, you know, we can be quite kind of paternalistic of children, and then suddenly they hit transition at 16 18. They are expected to go into appointments on their own. That can be a real shock for some children, young people who've always had a parent to advocate for them and speak for them and report for them. It's their lifelong skills in children and young people, knowing how to look for credible information. Knowing what credible information looks like and then being able to process that, understand it and see that they can participate and use that knowledge in shaping their own behaviours and their kind of choices. It is such a lifelong skill and it's too late to wait until young people are 14 15 16 and then suddenly think, oh, they're, they're adolescents, we should be involving them. Obviously, you wouldn't involve a three year old in it in a major life surgery decision. But there are choices that children can always be involved in, all the way through. Assumptions about how how big a child has to be before they can be involved, can sometimes disadvantage younger children from really learning those skills.

David: 28:59

When we first spoke, there was one thing that struck me that you were discussing, which was that, just the way in which different children understand different things. But also if they've been in the system for a while, they start to talk in medical lingo, but they don't necessarily fully understand it. But they can converse, because they've been around it for a while. But that just seems to be you know, there's real trouble around that..

Lucy: 29:28

Yeah. I think that's also the way that that some health professionals and the systems kind of work in. a child, young person comes in, and they can talk about, I don't know peak flows and blood sugar levels and they can talk about the things that they hear in conversation all the time. But I know some of our work has shown that even older young people can do day to day management. Can talk in a very medicalised language, because that's what they've learned over many years of engaging with health services. But if you sit down in depth with them and say, so what is your condition. What is it that you have and what happens in your body that makes that so. Some of them can really struggle to actually tell you what that is, especially if it's a condition that may be started from birth. If it's a congenital condition, because all of those diagnostic conversations, all of those initial condition, conversations can often happen between healthcare professionals and parents. Can often be assumed as that child passes through the system for the next few years that someone has actually sat down and spent a lot of time with that child looking at what they see is what's happening in their body and what happens. We've talked to our number one child who was 14, who had a diagnosis of scoliosis. Who thought that it was. Didn't realise it was her spine. She got quite a long way along, she had seen a physio for the altered posture. Didn't quite understand that it was her spine thought it was her muscle rather than her spine that have been affected. There's opportunities there to have a conversation with that young person to check what their understanding is. What do you understand about what's happening? We've spoken to younger children with asthma, who would draw, when they draw what their asthma is they might draw. One of the children drew a really big heart, because when they're having an asthma attack their heart pounds. When they think of their asthma, they think of their heart. That's where they thought it was, they thought it was in their heart. It's not until you you know, you spend time actually sitting down and play specialists and professionals throughout the health service that are often really good at this. To sit down and actually check out, what do you understand about this? What are your understandings of this? Unless that happens, that child and young person can get to quite an old age and not actually fully understand what it is they have.

Hannah: 32:13

Has your work in the past encompass the impact of labels. Labelling a child or labelling a condition because we spoke to Professor Neil Sebire from Great Ormond Street in series one. He had, it was off on a tangent, so we didn't fully explore it with him. But he had a really strong opinion of it. I think the idea that, I think that the very highest level was that giving somebody a label, it can actually mean many, many things. It's just not as straightforward as the title is

Lucy: 32:47

No. We've worked with families with children with a disability who fought for years for a label and not because it made any difference to them or their child or their family. But it just meant that services opened up to them that weren't available without the label. Some work that we've done with children with chronic lung disease didn't use the label. Didn't like the term chronic lung disease, because people would tease them that it was infectious, that they might catch it from them, they didn't want to play with them in the playground, because it had the word disease in it. That has connotations of concern for some children and young people. So they said they had asthma, which which was a far more recognisable condition. So these are quite young children making decisions about how they represent themselves and their condition to other people. To be able to join in with peers and friends and make choices about what they share and what they don't share about conditions and treatments that they have. Unless there's those open conversations, children are making those decisions sometimes on their own. In what can be tricky circumstances.

David: 33:58

When you were talking at the beginning and just kind of sharing your journey as to how you've got to what you're doing and the research that you've done. It just struck me as to how this hasn't come about in the past and how someone hasn't really looked, you know, hasn't looked at it. It does play into that kind of Not Mini Adults and there's an assumption that is made that people either do talk to their children, and have the ability to do that, or the want to do that, or the foresight to do that, or that just children, you know, miraculously understand what's going on.

Lucy: 34:32

Yeah.

David: 34:34

I think you taking the decision to move out of clinical practice and move into, you know, the research area and we've heard it from a few people, both friends and colleagues and people that we've spoken to. It's an opportunity for you to to help many, many more children than you would have been able to do on a kind of one to one basis. But I'm actually interested in how your work and research works on a more global scale. So what you're doing is obviously, within the UK within the parameters of the kind of local, so working in Alder Hey. I think you've done, you know, working and then in and around the northeast and what have you, but what about more global scale? So do you interact with other hospitals around the world? What have you learned from them or vice versa? Yeah,

Lucy: 35:27

Yeah so I'm quite fortunate to linked colleagues, specifically from Australia and New Zealand. A colleagues that I work with Benny Carter. We have links with guys in New Zealand and Australia. So we've done work using kind of arts based methods where we've explored children's understanding of their conditions and how they manage that. It's been really interesting to work with. Real similarities between the countries. I mean, obviously, these are developed countries. They have quite similarities in the way that the health systems work, but real similarities in in the way that children kind of approach their understandings of illness and condition. So the recent project that we've been working on looking at children's kind of understandings of Coronavirus and the information that we have around that. We were really fortunate to work with colleagues from Sweden and Canada and Brazil, Spain, Australia and New Zealand. Again, real similarities, despite all the different ways that all the countries coped with lockdown and restrictions and whether children went to school or stayed at home. There wasn't massive dissimilarities in the information that children had. The information that children wanted and kind of the approach that families and society had to sharing information with them. So although a lot of the work is based, kind of in the north of England and i think that's arisen from wanting to work on a one to one direct level with children, which is difficult when they're spread all around the world. That passion to actually sit down with children and look at look at their understandings and information. But actually, the things that we found have applicability and transferability, to most well, to many kind of cultures and societies. In which children are often seem to be less capable than they are. But just to pick up on a point that you were saying about, that just generally, children don't have the information that they need. I think that open conversation will acknowledge those children that don't want information. So I think it's just having a note of caution that not all children will want to be involved, to have information, to make choices and decisions. But it should be the children's choice to not rather than it being an assumption that they won't. So just picking up David, you were saying there about parents having skills to tell their children about things. It might be that the child actually doesn't want to know. It's asking, so it might be that the child wants to know, that has a question about this. If you're led by the child, they might have a question about a and then you can answer a, they don't want to know x, y, and Z. That's fine, because they've acknowledged actually I don't want to know that now. You can pick that up at a later date. But just like adults, children are unique and individual. So they need to be able to have a choice of actually what information and things they want. Sorry, I was just thinking, I should have said that. I need to say that before. So thank you for letting me add that in.

David: 38:36

I think we feel like we could probably talk to you talk to you for hours. But there's a couple of questions that I just wanted to kind of finish up with. One is, if any parents are listening to this, and they are, you know, and their children or child is having to go in for any procedure, is there any guidance that you would give them in terms of how to talk to them? Or just, you know, kind of address that and think about going about that kind of activity.

Lucy: 39:02

Yeah. So I think no matter what age the child is. We know that children tend to cope better with a procedure if they have some information and they know what to expect. So anything that you can provide the child with is likely to help, obviously be led by them, what do they want to know what questions do they have? The first way to approach that is to tell them that what's going to happen tell them that in a week's time, we're likely to go in and have this procedure or we're going to go and see the doctor and we're going to do this. There's a lot of evidence for younger children, it might be that you only kind of tell them a few days before whereas older children will want a longer period of time to process the information and think up their own kind of questions. We know that younger children are quite interested in the what? where? who will be there? What will it look like? Who will do what? Will you be with me? Will mum and dad be able to stay with me? Whereas older children are more interested in kind of what will it feel like, what can I choose about this. But if you kind of led by your child, then it's easier to have those conversations. There's some amazing resources out there. If you're a bit stuck to know what to say, there's charities. Dom's amazing digital platform of explorer, which has kind of 3D modelling of procedures. The child can see what it will look like, hear what it will sound like, see, he'll be there, know the difference between a nurse and a doctor. Actually, they're not entering an environment of uncertainty and strange people. They know what what's going on. So already that they're feeling more informed. There's children in hospital, which is a charity that creates videos about a massive range of procedures. So you can watch those with your child and go back and look at them again. There's books, there's cartoons, there's so many resources, but it has to start with telling your child in the first place. So having that conversations. We know that if children do know, then they will have a better experience. It's not just the one experience, there's sometimes the first interaction that a child has with health services is so important. Because if that goes wrong, then that can sometimes impact on that child's future engagement for the rest of their life. So you can end up with a child that doesn't want to go and have immunizations. A child that doesn't want to go to future appointments. So it is really important to get it right first time. Although it may feel tricky, is really important to talk to your child about what might what might happen.

David: 41:49

No, thank you and sorry. I thought one other question I wanted to ask. What next? in terms of your research and what you want to do what what next?

Lucy: 41:59

Well, I suppose there's just so many, there's so many ways in which children are currently, I suppose not afforded the voice that they should have and could have within kind of services. I would like to work more with children, young people creating resources, but it's not just creating the resources. But I think as a field, we need far more evidence about the impact that these make. So that we, we have evidence to show that children will have a better experience if they know what's going to happen and they're prepared and they understand. But we need more of that evidence. Because otherwise, it's really hard to sell to funders that creating these resources with children for children is worth the investment. That sounds quite obvious but how can it not be worth the investment to create something as simple as a an animation or a leaflet for children. But unless you've got evidence to show that, that this will impact and reduce the costs of the NHS by so much then it's hard to it's hard to gain funding to create these these resources in the first place. So I think it's having opportunities to create and work with children, young people a little bit more to understand what health literacy looks like for them for various kind of interactions and conditions, but also to build on this evidence that actually this stuff does matter.

David: 43:33

Our final question, I think we say this to to everyone, is that if you had a magic wand, and you could do and solve anything within child health, what would it be?

Lucy: 43:45

That's a really mean question. That's a really hard question to answer. Because, of course, you'd wish that children were never poorly and so never needs to go to hospital anyway, that wouldn't even be needed. But I guess assuming that is always going to be the case, I think just that we can recognise, just that systems are in place to work with children so that their experiences can be as good as possible. I guess and that we don't miss those really simple opportunities to sit down with children and say hello and ask them about how they're feeling. Ask them about if they have any questions. They are really simple little points along those trajectories that actually can make quite a difference to how children kind of experience health services. But of course, if I had the big magic wand, then there would be no need for health services because no one would ever be ill.

David: 44:40

I think we will all agree with that book. Lucy, thank you so much for joining us. It's been such a, you know, such a pleasure speaking with you. I think the topic that you are just you know, your life's work as it were. It's so important and we're so glad that we've been able to find you and share it and and have this discussion. So thank you

Lucy: 44:59

Ahh Thank you very much. Thank you.

David: 45:07

Again, thank you so much for joining us on the Not Mini Adults Podcast. We're so keen to make sure that these podcasts are listened to by all the right people. We do think that there's an opportunity for people to hopefully be inspired by them and help them in their careers in child health. A big thank you to Lucy for also giving up her time and having the conversation with us. All the details for Thinking of Oscar and also about Lucy's work can be found in the show notes. If you know of anyone that you think that we should be talking to, then please do get in touch. We really hope that you can join us again. If you've missed any of our podcasts, then please go back and listen to some of the amazing people that we've been fortunate enough to speak to. We really hope that you're listening again soon.