WEBINAR: Listening carefully: hearing the voices of young people in healthcare
PRESENTER: Dr Claire Treadgold
DATE: 28 June 2022
Prof Rachel Skinner [00:00:10] Good afternoon, everybody. My name's Professor Rachel Skinner, and I'd like to welcome you to the June Wellbeing Health & Youth webinar series from the Wellbeing Health & Youth NHMRC Research Centre of Research Excellence in Adolescent Health.
Prof Rachel Skinner [00:00:32] Firstly, I'd like to acknowledge the funding support of the NHMRC and the contributions of our research partners in the universities across Australia who are partners in this work.
Prof Rachel Skinner [00:00:49] I'd also like to acknowledge the traditional owners of the country throughout Australia and recognise their continuing connection to land, waters and culture. And we pay our respects to their elders past, present and emerging.
Prof Rachel Skinner [00:01:08] Just to bring your attention to the WH&Y Community of Practice on our website. This is a place where you can find the latest in the seminar series, the recordings, the latest of our research and any other important information that we've come across, and we think that you'd be interested in. It’s also a place where you can connect with us.
Prof Rachel Skinner [00:01:36] A bit of navigation, your microphone will be muted and your video will be switched off throughout. So the way that you can interact with our speaker is to post something in the chat panel on the right hand side at the bottom. You just type in your comments as you go and questions, please. And then at the end we will go through all of the questions.
Prof Rachel Skinner [00:02:07] I'd like to introduce Dr. Claire Treadgold. Claire's National Manager of Research and Evaluation at the Starlight Children's Foundation and Adjunct Associate Professor with the Discipline of Pediatrics and Child Health at UNSW. She has over 20 years’ experience in for-purpose organisations with a particular focus on young people, health and community services. Thank you, Claire.
Dr Claire Treadgold [00:02:35] Thank you so much. It is such a pleasure to be joining you all here today wherever you are. I'd also like to start by acknowledging the traditional custodians of the lands on which I am today, which is the Bundjalung people in northern New South Wales. I'm lucky enough to live in the shadow of Wollumbin, it was the local name of the mountain here. Captain Cook named it Mount Warning but the local people call it Wollumbin, which actually means cloud capture, which I think is incredibly appropriate, especially around here with all of the rains we've had. But I appreciate the traditional owners care of this land and thank them for it. And all the lands on which you are meeting today. So thank you for joining me.
Dr Claire Treadgold [00:03:17] I'm very happy to be here to tell you about a project that I've been involved in since it started and have seen the progression of and the final report come through. I'm very excited to share it with you. But I'd also like to start with another acknowledgment, and that is particularly the young people who gave their time and energy to this project. They were a key part of it. We couldn't have done it without them.
Dr Claire Treadgold [00:03:39] I probably do need to give you a little more context to the project and what it is. But first of all, I thought it would actually help if I gave you a little bit of context to the Starlight Children's Foundation, who I represent, who most of you might have heard of in terms of younger children, particularly with the Captain Starlights, which are in all our pediatric tertiary hospitals across Australia. Starlight is actually Australia's broadest reaching children's charity and it's been around since the '80s when it started by delivering wishes for sick and unwell and chronically ill children and young people and has since broadened its focus. Now, it delivers services in remote Indigenous communities, helping assist clinicians with health care delivery there. We have a dedicated adolescent program called Livewire, which is available both in hospital and as an amazing online community. We have a palliative care program called Moments with Children and Young People, which delivers ongoing moments of joy and distraction and creation of memories for families who have a life limiting illness. There's lots and lots that this organisation does, and one of the things it's actually very passionate about is engaging with children and young people, as in truly seeing and hearing them for who they are, and I guess that's why Starlight became involved in this project. So I'll tell you a little bit more about it later, but I did want to give you that background to start with.
Dr Claire Treadgold I’m probably telling this audience things they already know, but it's always great to give the context of where some of this came from. And it happened a long time ago, really. Back in 1990, the United Nations Convention on the Rights of the Child was ratified in Australia, and one of those rights, Article 12, was that the child should have the right to freedom of expression, the right to include the freedom to seek, receive and impart information and ideas of all kinds. And it goes on orally and writing in print and any other forms of media which are appropriate. But it was really about that idea to be involved, to be heard, to be listened to, to ask questions. Now this particular Article was not just held at the UN level, in Australia it became part of an important document that was put together called The Rights of the Children and Young People in Health Care Services. So this was a very important document that enshrined that right of children and young people to have their voices heard and to be taken seriously within a health care setting. This was something that was set among other rights, very similar again to the UN rights generally for children and young people. So in there was a right to play, which Starlight thinks is very important. But again, we were very taken with this right to ensure that children and young people's voices were heard in the health care setting. And it's such an important one in so many ways. And there are a number of other key organisations who felt similarly about this right. But what came about and what is really the reason and the impetus for the project I'm going to talk to you about today is a realisation that, of course, there might be a right and a stated commitment to that right. But the actual realisation, the actual practice of whether those rights are seen and enacted can often be very different, unfortunately. And that was very much the inspiration for this project, which is called the Listen Carefully Project.
Dr Claire Treadgold [00:07:07] So I'll go back and give you a little bit of timeline because it actually has its real basis in a 2011 survey that happened and it was put together by CHA, which is short for Children's Health Care Australasia, which is a major group, a nonprofit again, but a group that is there as the kind of peak body for all the children's health care services in Australia. So it represents all the hospitals, all the regional, all the different groups that are passionate about children's health care in Australia and they have a wonderful membership throughout the country. I'm sure many people on this webinar are a part of it as well, including some special interest groups, particularly dedicated to children and young people's health care and ensuring the best possible outcomes in that area. And in 2011 they went through to Australia and New Zealand because they're involved in both countries and actually gave a self-evaluation against all the key rights that were in that health care charter. And what they found, unfortunately, was Article number 12, the one about the right to listen and to be heard was the least held up right. It was the one that people were seeing in action the least. It was the one that was least known about and had the least action in practice happening. So that was obviously deeply concerning to CHA and to all the people who are passionate about this area. But it did take a few more years for anything specific to come along before, there were other surveys and there was follow up research conducted. For example in New South Wales Health they also looked at this right and they asked practitioners and clinicians how well they believed that this right was being enacted. And unfortunately time and time again the results came back that children and young people really weren't being listened to in their own health care situations. So that prompted some very committed people to start the Listen Carefully Project In 2017.
Dr Claire Treadgold [00:09:00] We established a research collaboration essentially led by Starlight, again, because of that passion as a national organisation, with this national presence in all the pediatric hospitals with adolescent programs as well, it was thought that we could actually have an impact and a reach that perhaps and a nonpolitical reach that could perhaps overcome some of those issues that might exist for other identities and organisations. We took this on as a project and we partnered with CHA again built on the very important work that had already been done and partnered with them and the amazing Barb Vernon who heads it up, great, thanks to her. It was very much led by Professor Les Whyte, who many of you know, he was previously the Chief Pediatrician in New South Wales and head of the Sydney Children's Hospital and incredibly passionate about the rights of children and young people throughout his entire career and hasn't stopped being. And he's been involved with both CHA and Starlight and was very much the champion for this project.
Dr Claire Treadgold [00:10:00] Starlight began The Listen Carefully Project by gathering people who were interested and passionate about this area. So that was CHA, but it was also a range of academics and clinicians coming from different universities, different services, consumers and so forth. I will stop at this time because I think it's really important to note something that we lacked and we look back now, to be honest, in a little bit of horror that we didn't actually have any young people on that group. It was very much the traditional medical research style group unfortunately, we did have parents, consumers involved, but we didn't actually have children and young people. Of course, having completed the research study, we are dismayed that unfortunately it didn't happen at that time. By the time we were thinking about it, the discussion was whether it was token to include someone at a later date. And so very much we take on our own findings and it has very much changed the way we go about all our work we do now and our processes. I do want to acknowledge that straight off that we were not an example of the best practice unfortunately in this research project. So we own that and know to do better.
Dr Claire Treadgold [00:11:13] But that group did take fourth and go out and it has expanded since. But this advisory group came together and they started the first stage of the project, which initially was more just a kind of a fact finding mission, and it was done by going back and doing a survey very similar to the 2011 survey that went out to CHA members. So again, we used that group and we wanted to benchmark what the difference was between 2011 and 2017. What had the difference become in the enactment of this right of children and young people to be seen, to be heard, to be listened to? So we asked a similar group, similar questions, and had them up for comparison. And unfortunately very little if anything had changed. We weren't identifying best practice. We weren't seeing examples of gold standard here and how to do it. People were talking about their disappointment that there had been little change in the survey.
Dr Claire Treadgold [00:12:13] We also conducted a literature review at the time because we were interested to see if anywhere else in the world was doing it better. And again, perhaps if you're interested in this area, you won't be surprised to hear there wasn't even a great deal of literature out there, unfortunately, there wasn't enough written about this area. Some of the leading works were coming out of Ireland and still are. But unfortunately, what the literature discovered was very little is being done to formally improve the rights of children to be heard. There were very few examples of best practice happening out there.
Dr Claire Treadgold [00:12:48] So that then led us onto the second stage of the Listen Carefully Project, which I'm going to tell you about in more detail today and the findings, which was really to look at six in-depth case studies. We wanted to go through and really identify the strategies that are used across the Australian healthcare system to find out which ways children and young people are actually being heard, what strategies do exist. We knew there were some, so we wanted to really look at them and find out what was making them successful, where they were being implemented, what were the things that were really driving the success of them, but also what were the barriers? What were the things that were holding people back? What were the factors that were stopping these strategies being implemented as well? And of course, coming out of that, we wanted to see what opportunities there were for improving, how could we intervene, how could we create systems and processes to ensure that children and young people are better heard within the health care setting?
Dr Claire Treadgold [00:13:47] So that was stage two of the process. This is what we went about trying to discover. And we'd actually done it by looking into case studies, as I mentioned. What we've done is as part of that survey out to the CHA membership, we had asked them to suggest locations of where great examples or good examples or examples of really listening to children and young people were actually happening. People had strategies or tools in places or deliberate processes in places. So coming back were some sites that were identified, but also using the expert group and the advisory group, we tapped into their knowledge as well to say, what have we heard? What do we know? What is the literature showing us? What have we found? And so we had some additional sites added through that process, we went to the networks and asked as well.
Dr Claire Treadgold [00:14:37] You can see on this map that we ended up with six case study sites. They were on track at Peter Mac [the Peter McCallum Cancer Centre], that's a dedicated adolescent and young adult cancer service, specific to oncology, that has been incredibly successful in working with adolescents and young people, particularly in Victoria where it's based. But also Tasmania taps into that as well, but they are very much seen in the oncology world as best practice there. We also went across the country to Perth Children's Hospital, we had the Royal Children's Hospital Melbourne, we had the Sunshine Coast University Hospital, the Sydney Children's Hospital Network, which of course takes in Randwick and Westmead, and Women's and Children's in Adelaide. So, literally jumped all over the countryside there for you. But there are six case sites that we took part in.
Dr Claire Treadgold [00:15:24] Now our data collection process was to first and foremost interview the key consumer engagement staff across each site. So they were identified through the survey, through the discussions, through the advisory boards as having the best overview of what kind of tools, what kind of strategies were being used to engage with children and young people at their sites. They were keen to go through this interview process. But of course, very important to us was actually to tap into and work with and have focus groups and interviews with youth advisory groups where they existed and they might even have had different names, so youth advisory committees, YACs, for some, youth advisory groups, YAGs, for others. They didn't exist in every single hospital at the time and a lot of them had been recently revised or regrouped, and I'll let you know a little bit more about that later. But where they existed, they were very much a key component and gave us a great insight and a wealth of data and we couldn't have done it without them.
Dr Claire Treadgold [00:16:24] Once it was all done, all the interviews and the focus groups, of course, we went through coding them verbatim and line by line, and then we did a qualitative descriptive case study for each site. In the actual report, we literally have each site outlined in detail all the different areas we looked at before, of course, we did a thematic analysis of all the combined data and findings from these six case sites, we put them all together. And really, that's what I'm going to share today. Really thrilled to give you a little bit of insight into what those six case sites showed us. Okay. So that's what we're going to share now through the thematic analysis.
Dr Claire Treadgold [00:17:05] We came up with eight key themes. Don't try to read them all there. I'm going to step you through them one by one. There were, of course, individual ones which were more specific and some outliers and some really interesting ones to each particular service or hospital or case site. And that's why we did a full case site study on each one as part of the report. But these were the eight ones which came across so strongly and came across through all the hospitals as well and all the health care settings.
Dr Claire Treadgold [00:17:36] I'm going to break it down and keep talking you through them slowly but surely. The fact that there was a strong belief by the clinicians, particularly, but also by the young people themselves, of course, but particularly by the clinicians, that hearing the voices of children and young people actually ensured best quality health care. They thought that it was incredibly important to involve children and young people in their health care decisions, not only as individuals in terms of improving individual patient outcomes, but they also thought it was important for developing services across the hospital, for developing the clinical services, and improving clinical services. They wanted that feedback. They wanted those insights from the children and young people. They also thought it was vital for policy and governance. So they were very much committed to the quality that having children and young people involved in this process, involved in deliberate processes had. They also saw that there was a benefit to the children and young people themselves by having that chance to articulate what their needs were, what their interests were, what their feedback was about their own experiences. They all talked about things like improvement in treatment adherence. They talked about the fact that it ultimately gave us something which is so important, that sense of control. So we know from all the other research that children, you'll all know this, I'm singing to the choir, but children and young people in hospital so often lose that sense of control, have no agency. Quite often, so many decisions and experiences are taken out of their hands. So by being asked, by being involved, they actually had that sense of control back, which was so important. The clinicians and the health care professionals were recognising this as well. They also talked about it just generally improving the health care experience, making it a more positive experience for these children and young people, which, of course, we know a more positive health care experience can lead to further, and better engagement with health care in the future. So it's very important, where possible, to have that positive engagement, so it continues and they continue to engage and get the help and treatment that they so need.
Dr Claire Treadgold [00:19:47] So that was the first one, the first big one. As this quote here says, "making sure the patient’s rights are heard will have positive flow on effects. If they involve them in their own health there is usually a better outcome for them.” It seems so incredibly obvious on one level, but it did need to be stated.
Dr Claire Treadgold [00:20:05] The second key finding was about the how and the what of collecting feedback. Now, the how is really interesting for us particularly. How people went about getting feedback from children and young people or involving them in any sort of form of questions about their situation was vastly different. We had everything from volunteers handing out iPads, traditional pen and paper through to face painting. We had, you know, asking questions while their face is painted, which is actually incredibly successful for that cohort. We had feedback trees where people would post things on walls. We had letterbox drops, mails, QR codes to be scanned, all kinds of different ways. But there was no consistent method. And interestingly, but not surprisingly, one of the key feedbacks came was it wasn't actually often the children or the young people who were actually providing the feedback. The parent proxy was the most common in this situation. The parents were actually answering on behalf of the children or for the children, or being asked to answer on behalf of the children. So the children and the young people and even when we were talking to teenagers and the adolescents, they weren't being asked. Their parents were being asked, unfortunately. So that was a big concern.
Dr Claire Treadgold [00:21:25] The other part of this was that there were no kind of standard questions being asked, not just across these six different case sites and different healthcare settings, as we know, but even within systems and within hospitals. There weren't consistent questions being asked. And this, of course, makes it very difficult to do any comparison, any research, looking at different areas of different outcomes or any kind of benchmarking. So the what and the how of collecting feedback to see those great disparities is actually very interesting and leads to some great areas for improvement of course, we'll talk about that later.
Dr Claire Treadgold [00:22:00] This one was of particular interest to young people. And I really want to give it some weight and talk about it. We had a lot of the youth advisory groups particularly talking to us about the failure of people who did ask them for feedback or input to actually close the loop once that was done. So it was this idea of when it did happen, youth advisory groups, particularly, the YACs or YAGs talked about this a lot, the times when they were asked for input, when they were asked for their opinions or advice or feedback, but then they never heard what happened to it. It just disappeared into the ether. That was the most common response. And of course that left people feeling both disappointed and disempowered. They weren't sure what was being used, if it was being used, or how it was being used. It was just this really disempowering and disappointing experience for them where they didn't know what was happening. And it ended up quite often with these groups, instead of being enthusiastic, losing enthusiasm. And what came from the clinicians or from the youth engagement side of the hospital was often people didn't know whose responsibility it was to close the feedback loop. There wasn't any process sitting behind it. So once feedback was gathered, often they didn't actually know what to do with it, they weren't sure how to tell people or who to tell about it. They didn't go back to these groups, so they were aware of that themselves. So there's this great disconnect and we realise it is incredibly important, of course. We all know this. If we give feedback, we want to know how it's used. These young people deserve to know how it's used. So as you can see from the quote here, they want to know if it's valuable. Does it create positive change? They want to help feel like they're being part of that positive change as they genuinely are. So it's so important to ensure that we close that feedback loop.
Dr Claire Treadgold [00:23:49] I spoke previously about how important the youth advisory groups were and how valuable their input was into this project. But one thing we noticed was that there was no consistency about setting these up either, which we thought was really interesting. I guess a bit naively, we perhaps thought we'd go in and they would be kind of standard models or standard guidelines in use. But what we discovered was each and every one had been set up very independently, very differently. There was no set of guidelines. There were no suggestions on the how out at the time. I believe the Office for the Advocate for Children and Young People has since offered some guidelines generally for running youth advisory committees, not specific to the health care setting, but certainly at this time there wasn't anything out there. Nothing had been formally set up, but we had noticed as well and perhaps COVID had something to do with this because we were running this process throughout some of the COVID years. What we found was that a lot of these groups had kind of fallen away and had had to be restarted. And in fact, this has happened several times in some cases, which is interesting in itself and points to problems with the processes being used. Again, we'd hear that story about them being really enthusiastic and then falling off a little bit or problems even with representation within them. How to get that representation. But we also had some amazing and wonderful examples of them working really well. You know, one of my favourites, it was about the young people going out to wards and getting feedback from other young people because they were very aware that they weren't representative just by themselves of all young people at all. So they were doing their best to physically, literally physically go out and gather more feedback and involve more and widen the circle themselves. So this is a really interesting one about how we can support the establishment, how we can use co-design again none of them were developed in co-design at the original time, although some of them have since very much adopted it. But how can we do youth advisory groups and support them really well in the future?
Dr Claire Treadgold [00:25:47] Another interesting finding, although perhaps again not surprising, was that particularly the youth engagement officers and clinicians often struggled to hear the voices of younger children. I think we're particularly talking about the under eights in this stage. They didn't necessarily feel comfortable talking to this age group in the same way they might feel comfortable asking a teenager to talk about their experience and what they were going through. They weren't sure how to engage in a meaningful way with children. They were really struggling with this, and to be honest, most of them kind of avoided it because they didn't know how to do it. And they were honest about that, that it was almost just one of those in the too hard basket trying to get the voice of a younger child.
Dr Claire Treadgold [00:26:30] But they also did agree as well as younger children, there were other groups that really did require further attention and whose voices weren't being drawn out and particularly weren't being heard. They weren't being asked. They weren't being involved. They weren't being engaged. So there were a number of groups that people identified. The quote here probably sums it up by saying, we hear more of the majority rather than hear about young, the children, the Aboriginal, the CALD consumers, our consultations always have a mix of some people, but I don't think we hear more directly from the vulnerable groups. And that was very much echoed across all the sites. The vulnerable groups included in that were also, for example, intellectual disabilities. There was a great deal of angst that we weren't able to involve children and young people with disabilities more, and they weren't hearing from them. And also a group that got singled out was children and young people under the guardianship and again, hearing from these vulnerable populations. So there was widespread agreement that unfortunately not enough is being done to hear these voices.
Dr Claire Treadgold [00:27:45] What won't surprise people is that there was genuine commitment particularly from the clinicians and from the consumer engagement staff that they really did want to engage with children and young people, but they often felt time poor. They felt resource poor. It was one of those things where they recognised and felt it could be quite intensive in terms of time and resources to do it well. And so it doesn't happen. It's one of those things that drops off again, too hard basket, because in all the businesses, in all the clinical work and all the things that have to be done, unfortunately, children and young people don't get the attention they deserve. They aren't asked to engage, aren't asked and listened to. Sad, but not surprising, unfortunately.
Dr Claire Treadgold [00:28:33] And then last but not least, is the importance of skilled staff in doing this. So again, people talked about not necessarily feeling that they had the skills that they weren’t equipped to have meaningful conversations with children and young people. They didn't think they had the skills to engage with young people in a meaningful way. They lacked confidence. So they talked about needing to have people trained in this to feel confident. But they also talked about the need to have skilled staff at all levels. So not just the face to face staff, not just the nursing staff or the allied health staff or the doctors, or youth engagement staff. But they also talked about needing champions at all levels, including say champions in the hospital, executive people who truly believed in having the voices of children and young people represented. That was considered very important, very key, as we too believe.
Dr Claire Treadgold [00:29:30] So that's the key findings wrapped up. I'm not sure many of you who've worked with children and young people will be shocked, unfortunately. I'm sure that this is very much what you've heard, what you've seen, what you've witnessed to different and varying degrees. We do know and I don't want to send doom and gloom because we do know there are some amazing examples of where it is being done well, where we do have the voices of young people coming through strongly. But we do know there is an opportunity to do more and to do better. And that was very much the theme that came out of this, and which was really great to hear. It was this universal commitment and ambition to do more and do better.
Dr Claire Treadgold [00:30:16] The Expert Advisory Group in writing up the results and findings didn't want to put recommendations per say because it wasn't coming from us. What we were very keen to do was ensure that we reflected back what the clinicians, what the young people involved, what the youth engagement officers actually told us they wanted to do. So these aren't coming from the Expert Advisory Committee. These are very much the reflection of what all those key groups told us through this research. And they break down into three key areas: health care services, future research guidelines, and national consistency. I’ll break them up a little bit.
Dr Claire Treadgold [00:30:53] In health care services, the suggestion was the need for dedicated roles. We do need people whose roles are specifically there to elicit the participation and the engagement of children and young people in the health care setting. So we need people who are trained up in that area and they go out and they advocate to other clinicians, to other staff members to be part of this as well. Dedicated roles and not just one. This is really important. It shouldn't just sit on the shoulders of one person to actually have to take on that role. There needs to be teams. And this speaks to the next point, which is the need for champions preferably across the hospitals. Again, speaking to that need for people to be engaged at all levels from the face to face teams right up to the hospital executive. Champions across the organisation really ensuring that children and young people are being listened to. And the important one we spoke to earlier, the need to define those feedback loops. Put in place processes where children and young people are providing insights and feedback and telling you what's important, that there is actually something done with that information and that they know what was done with that information. Putting those feedback processes and loops in place.
Dr Claire Treadgold [00:32:10] The next set of suggestions comes under future research. And this is a really exciting one for me and I'm really thrilled to be talking about it today because it's already coming to life. So I love being able to talk about it. It's the idea of creating, developing a national pediatric PREM, a patient reported experience measure. There are different PREMS that exist in the world, and certainly there's a lot of adult PREMs, but there's actually very few dedicated pediatric PREMS, so children and young people and there are none which are used consistently in Australia nationally. So the idea of having one that could be applied for free, by the way, because there are some which exist from the UK for example, but a free national pediatric PREM that everyone could use that is available then for benchmarking, for comparison, for inspiration purposes. It's a really exciting concept and this is something that CHA are currently leading the way in. So they are doing an amazing project called What Matters to You, and it's developing a national pediatric PREM, essentially. And stage one of this process is underway. And I'm really excited that Starlight's been able to be part of this project as well. We've been brought in for the way we engage with children and young people to help go out and research what matters to children and young people. The first part of this project is trying to work out what the most important factors are for young people so that they can then develop questions to match with this. So rather than taking adult questions based on adult concepts, we are actually asking children and young people now in these six sites you see listed on the screen. It's just started. They're going and talking to children and young people and finding out from them what is important to them about their health care experience. Is it that they are involved in their treatment decisions? Is it that their room has space for their sibling to stay the night or their boyfriend or girlfriend or parent or whoever is a significant person that they want to stay the night. Is it the food that's important, whatever is important to them? So we're trying to find that out from children and young people right now. These six sites. Sydney Children's Hospital, Sydney Children's Hospital Randwick and Westmead, Queensland Children's Hospital, Women's & Children's Adelaide, the Royal Darwin Hospital and John Hunter Children's Hospital have all come on board as part of this project so far. We've got ethics approval for this first step to go out there and find out what it is that's important to children to then start the process of those questions and of course validating those questions and hopefully ultimately creating a pediatric PREM too tour, which should be amazing.
Dr Claire Treadgold [00:34:56] The second part of that project, which was on the previous slide, is the importance, I guess, of how the PREM, or any or any kind of questions or any kind of feedback tool for children and young people is actually done. Of course, we need to do the actual delivery of it in a way that is appealing and genuinely engaging for children and young people. So the second part of this project is actually to again co-design working with children and young people in which way would you like this delivered to you? What is the most engaging means? Is it through surveys? Is it through iPads? Is it through Tick Tock, whatever it is. What is the best way? So that's still yet to come. But it's exciting to start thinking not just about what questions, but how we actually ask the questions is definitely in there.
Dr Claire Treadgold [00:35:47] And other suggestions are this commitment to do more and do better around having guidelines and national consistency again. Again, is there a way we can support youth advisory councils in health care settings to be the best they possibly can, to ensure that they have the best possible experience? Also, there were suggestions around working with children, young people who have a disability, and also for those different vulnerable populations. So we're talking about those and an interesting one around national consistency, clarification of when perhaps a parent proxy feedback is sufficient or is required. So perhaps with younger children, for example, one to three, or non-verbal children, is that when a parent would be appropriate? Having some kind of consistency around when that would be appropriate is one of the questions.
Dr Claire Treadgold [00:36:39] That's the end of the actual report and the findings and suggestions that came, as I said, from all the people involved, all these advisory groups, all the clinicians, all the engagement officers who took part in this. If you'd like to read it in more detail all 121 pages, I can certainly email you a copy or you can download it from our website as well.
Dr Claire Treadgold [00:37:02] I just put up here a list of all the amazing committee members who took part, but also the acknowledgement of all the other people who were research participants. And again, I want to really thank the youth advisory groups and councils and the young people who were interviewed and were part of this because they were so key to what we did. And as I said, one of the key things that they shared , one of the most important things they shared with us, was the need to close the loop. And we very much took that on. You know, as I said earlier, we recognise where we had failed early in the process. And so we wanted to make sure that towards the end we didn't fail. So with the support of young people, we actually developed an animation of this project for them, which I'm going to share with you, just to finish off. It's the last thing I'm going to share with you before I hand over and see if there are questions. So this is a little animation that was put together with the advice and support of young people to explain, firstly, what happened with the feedback, what the report was. And it was specifically to the young people who took part in the process in the research. This went directly to them, but we've also shared it more widely so other people can understand what's going on.
Video recording voice over [00:38:16] "Young people have a right to express their views and be heard. It is important. Children and young people have a right to express their views and be heard. It is important that we listen to what they think, feel and experience. This is especially true when it comes to their health. But are children and young people truly being listened to in health care? To better understand this, Starlight established the Listen Carefully Project in partnership with Children's Health Care Australasia. The project was guided by a group of experts from across the health sector and leading universities. We surveyed hospitals and health services across Australia and New Zealand about whether they felt they were doing a good job at listening to children and young people. We reviewed the international research to find out how other countries were doing in this space. We then interviewed Youth Advisory Council members and health professionals about what works well to capture the voice of children and young people in their health service and what they felt could be improved. Overall, we found that health services understood the importance of promoting and listening to the voice of children and young people. Yet there was a universal commitment to do more and to do better. Our interview participants emphasised the value of a well-run youth advisory council and skilled and committed health professionals who feel comfortable engaging with children and young people. However, they also shared the challenges of enabling younger children to voice their opinions, as well as greater efforts needed to hear from Aboriginal and Torres Strait Islander children and those who come from culturally diverse or lower socioeconomic backgrounds. Guided by our findings, especially the voices of the Youth Advisory Council members and health professionals, we provided several suggestions for next steps. Here are just a few of our suggestions:
· Develop guidelines for how to set up a Youth Advisory Council and guidelines for how to co-design with young people.
· Establish training for health professionals about how to better listen to children and young people who are from a different cultural background.
· Create a list of questions for children and young people to answer about their hospital experience rather than having adults do it on their behalf.
· Develop fun and engaging ways to collect feedback and ensure that children and young people are always informed about how their feedback has been used.
Children and young people have the right to express their views and be heard in health care. The Listen Carefully Project aims to raise awareness of this and to promote opportunities for a greater national approach. Together, we can do more. For more information, please visit our website."
Dr Claire Treadgold [00:41:11] And that's it. Thank you so much for listening today. And again, I just want to thank all the young people who are involved in this project. We couldn't have done it without them.
Prof Rachel Skinner [00:41:23] Thank you so much, Claire. That was just a wonderful presentation. It's just incredibly important work that you're doing. And I've got a lot of thoughts about how we can draw on the findings and promote the conclusions of your study throughout the health care settings where I work and where my colleagues work, definitely.
Prof Rachel Skinner [00:41:48] While we're waiting for people to put some questions in the chat, I have some questions for you. I was just interested to know a few things around, say the clinicians' perceptions of involving young people in their service provision and how you found that from the literature at least that having their input provided better outcomes in terms of their health care outcomes. I suppose that that does come from the literature, as it's quite hard to measure, but it does really resonate with me because I think that sometimes when we're thinking about young people we tend as clinicians because I'm a pediatrician working at SEHN and we think, you know, what's important is what we think is important. But sometimes it's the outcomes that matter most to them that perhaps are the better outcomes. And so I think that it would help clinicians to understand that involving young people in the decision making process can actually lead to better outcomes because they're all very focused on better outcomes. So that might be the way in to get their engagement in the additional time commitment that they perceive that this would involve. Wondering what you thought about.
Dr Claire Treadgold [00:43:22] I totally agree. I always go back to one of my former lives when I worked in adolescent and young adult oncology. And there's an amazing nurse in the UK who worked a lot with Teenage Cancer Trust over there and she wrote a really fascinating article, I think it's got some great name like Sex, Drugs and Rock and Roll, around this exact topic about listening to the young people to get better outcomes. And she gives a lot of examples around that, and one that always stuck with me was a young girl who was absolutely refusing treatment and really needed it for her cancer. And when someone took the time, I think i was probably this nurse herself, took the time to sit down and chat to her and really dig a little deeper and delve, which was scary because to be honest, apparently she was a bit of a scary teenager at this point, very angry and understandably angry. But it was actually around the fact she was terrified of losing her hair and not being able to do the school dance and some of these other milestones which are so important to teenagers to any person really, but particularly to teenagers, some of those really key things. And so when they understood that, the clinicians then went, Oh, let's work the schedule around so you can do your dance, let's work the schedule around this and let's bring in the team to talk to you about other things and other treatments. And it changed the outcomes. So, that is just a simple, really basic example, but it always stuck with me. And as I said, there's this whole article about taking into account a young person's life and interests. And if you can tap into that, then you can potentially change their adherence and their outcomes from that point of view. But again, as we found from our study and as we know from other studies, not everyone's confident to have those conversations, and particularly with different ages or different backgrounds, as we said, Aboriginal children or vulnerable populations or lower socio economics actually get left behind even further. So having the clinicians do that and we know I don't want to tar everyone with the same brush because there are so many amazing clinicians who are out there doing this beautifully and that came across too. So it's just how do we do more of that, I guess.
Prof Rachel Skinner [00:45:39] Exactly, and that sort of comes to a question about how do we fund and support young people to work with clinicians through our system. Daniel has a question, so I'll go to Daniel's question. "Thanks, Claire. Really interesting presentation. Do you think there is a way for us to show the benefits of youth advisory groups to governments to support funding for these approaches?"
Dr Claire Treadgold [00:46:12] Oh, that is a good question. There are so many benefits to youth advisory committees. I mean, I think with governments, it's often cost benefit analysis, isn't it? It's always around understanding where the bottom dollar is, to be really honest. I know, for example, again from my background in oncology and AYA cancer services, getting those cancer services, government funding was proving the cost saving benefits as well. So I think if we can show that these committees have the ability to actually change health care experiences, to make sure that children and young people with better clinicians are more effective, that the outcomes are there, then perhaps we can show them that way. But I also believe totally in the power of stories. I think it's so, so important to show these individual stories, to show where they've made a difference on a day to day basis, to show the impact to the individual or to the group. I think we can do that through stories. And I think youth advisory groups, as I said, you know, the stories that stick with me are them going out there and talking to other young people and finding out what's important is really different. I read a story yesterday which was about Ryan's Rule, needing to call on Ryan's Rule when a young person wasn't being listened to. And to me, that really had that impact of hearing that young person's voice. So I think if we can tell these stories of the differences youth committees are making, then hopefully we can have some influence with those.
Prof Rachel Skinner [00:47:41] Great. Thanks, Claire. That really resonates with our WH&Y Commission, which is in research. I've got another question from Helen. "Sorry if this is a stupid question. But your research extends across a very large developmental age span. In terms of improving patient and hospital experiences, how do you plan to manage the potentially huge differences in feedback across children and young people?"
Dr Claire Treadgold [00:48:09] That is not a silly question at all. It's a really great question and it's one we grapple with because you're right, we absolutely do go across a massive age group, particularly the work we're now doing with CHA around the PREMs is very much a big group, zero-18, although I think we're focusing, to be honest, more on six to 18 for that reason, that recognition that the younger age groups probably do need a parent proxy, it's hard to get away from that. But that doesn't mean, for example, we couldn't work with parents on how they engage with their children to get the answers as well, which I think is interesting, we haven't gone down, but I'd be really fascinated to know more about what we are doing that is working. I guess in terms of Starlight it is very much looking to the children and young people to guide us themselves, so again, coming back to that co-design, so letting them help and tell us, they’re the best, what they suggest and how to do it. We're probably going to have to do some stratification to be realistic. So for example, you couldn't do a PREM that's going to go from six-18. We probably do have to chunk it sort of developmentally, perhaps, rather than by a specific age and again, approximation of it. But again, to give you an example, we're doing it right now to engage with children and young people in the research is we're very much tailoring it to different age groups. But more than the age group, tailoring it to the actual child, the actual young person themselves. Now this is possibly a luxury we have as an organisation and in this piece of research, but the activity we're doing is very much in the research. The way we're doing it is very much based on the child sitting in front of us or the young person sitting in front of us and what they want to do and how they want to do it. So we talk to them about how we're guided by them. We follow that and that's a luxury, I will be honest and say I'm not sure, you know, a national health system has the luxury. So we probably do have to come up with some practical ways to kind of stratify. But what we're doing right now is using that luxury and going as broadly as we can and using different strategies and trialing and very much just being led by the child and young person what they want. And by that co-design process from young people telling us, and then we'll have to rationlalise a little bit after that to go well, here's maybe five different ways of doing it. You look at the person in front of you and work out which one fits best. I can't tell you for sure how it's going to work, but that's the way I imagine if we come with five or ten different strategies and then it's up to the young person to say, actually that's the way I want to do it, or that's how I feel most comfortable. That's our hope.
Prof Rachel Skinner [00:50:46] Thank you. So we have a question from Pip Colin. "Fantastic research, Claire. What are the insights around how to better enable participation from the priority groups?"
Dr Claire Treadgold [00:51:00] Oh, Pip, I wish I knew. I think I'll be turning to all the groups out there to tell us. That's the big challenge. And again, I think that's where we need to go to the different experts in different groups. And certainly, for example, the advisory committee were the first to put up their hands and say, we're not experts in all these areas. So we do need to hear from Indigenous young people. Aboriginal & Torres Strait health workers and clinicians who work specifically for those vulnerable groups to hear from them. For example, we didn't think you could have one set of overarching guidelines that was ever going to work across all these vulnerable populations. Intellectual disabilities was a group that really stood out for us as a great challenge, and so we've started to talk to different groups involved with that specific needs to see if there were recommendations and suggestions. Similarly, with culturally and linguistically diverse but even socioeconomic. It's so interesting, you know, how many different layers there are and how much integration and mingling. And of course, you can't just put people in boxes. These boxes are just all made up and they're mixed. So it's very, very difficult, Pip, I don't have a good answer. I think we are looking out there to the broader research community and the clinicians who are passionate about these different groups to come up with suggestions and working groups to try and delve into some of these areas.
Prof Rachel Skinner [00:52:25] Thank you. I have another question. I was really interested in your comment about the importance of having champions through the health system at all different levels. And I just wonder whether some of those champions could be young people themselves. So perhaps, you know, young people sitting on the key committees where decisions are made, being part of that governance process. I know that we have consumer reps on those committees. So perhaps we could have supported young people, of course. And from those different priority groups.
Dr Claire Treadgold [00:53:05] Couldn't agree more. And I think we should definitely have that. We should definitely have children and young people supported, as you say, to do that. And because, again, it just goes to this principle of how do we hear their voice if we're not listening? So if they're not there we’re not giving them the opportunities to do it. But the thing is I'm also so aware that young people are busy and so we also have to find ways to fit this into their lives. I mean, you think about these two-hour committee meetings we sit in and it's just not practical. So we need to find better ways to engage in ways that suit them as well, to be aware of those kinds of barriers to involvement as well. But you're right, I cannot think of better champions than themselves. So with support and training and assistance and mentorship. And that's why, for example, the Youth Commission to me is such an amazing program. And if we could just clone and have thousands of youth commissioners who could actually be put in these situations and called upon to be champions, I can't think of a better way to spread the message and to share the importance than these living, breathing treasures of Youth Commissioners.
Prof Rachel Skinner [00:54:18] Thank you. So one of the other things that we've wrestled with is the appropriate remuneration that reflects their time and that impacts on them in a way that we might do for adults as well. Of course, to make the advisory council function well, you also need to have a project officer or someone helping to support them. So there's funding involved. And that's always a challenge I imagine.
Dr Claire Treadgold [00:54:57] And a big challenge, and in numerous places, and what we found was some were paid and some weren't which was interesting within itself. And funnily enough, I used a quote recently in an application that came from the young people they talked about not demanding being paid, but volunteering. And quite a few people are up in arms, they say they shouldn't be volunteering, and I don't disagree but this young person had said, well, I don't mind because I really want to get the message out there. But they should be recognised for their skill, for their experience and their expertise being that young person. And, you know, you hear horror stories where it doesn't happen, to be honest, but once upon a time, they were having to pay their own parking if they had to come in to be part of a group at the hospital. We all know what hospital parking is like. So to have expenses paid to have their time paid for their expertise, definitely. But also, as you say, to have dedicated roles to support them. And one of the challenges we found that came out everywhere was that the turnover of those roles has been hugely problematic, turnover at the moment full stop is a massive problem in the health system, but that role in particular has been a problem. And so when that turns over, it has such an impact on these committees. So having more than one person, I think, you know, having a team surrounding and supporting this kind of work is actually very, very important.
Prof Rachel Skinner [00:56:22] This is actually a comment but I will make it live. So Pip responded and said, " Great, thank you. But the inside of needing a range of ways for young people to share their experiences and participate in the ways that are meaningful to them is certainly one that we found in other settings, e.g. research and mental health. Though implementing that as a principle is a challenge, and we would love to create that with you."
Dr Claire Treadgold [00:56:48] I would love to create that, Pip, so let's do it.
Prof Rachel Skinner [00:56:51] Yeah. Okay. Excellent. Well, thank you very much for that. I'd certainly hope that given all those hospitals that have signed on to this project, will implement the findings. That is a wonderful goal. We'll draw the session to a close and I just have one plug. We have an exceptional WH&Y event that's on tomorrow night, and I urge you all to join us. Well-Being, Health and Youth Research Pride to Celebrate Pride Month June. We're having a conversation with young people about the best ways to engage young people with diverse genders, sexualities and variations in sex characteristics in health research. So this is another priority group for you, Claire. The next frontier for you. Join us if you can. It's tomorrow night at 6 p.m. and we'll send out an invitation link if you don't have one. Thank you all for joining us today. And we'll look forward to seeing you again next month. Thanks, Claire, so much.