In Conversation with the CASCADE Parents Group

Martin Elliott sits down with three members of the CASCADE Parents Group in this episode. They discuss the importance of including Public Involvement within Social Care Research, highlighting the expertise and voices of those with lived experience, and how to support members of your public involvement groups throughout the research process and afterwards. 

Critical reflections on public involvement in research: Involving involuntary recipients of social services to improve research quality | The British Journal of Social Work | Oxford Academic: 

https://academic.oup.com/bjsw/article/55/5/2500/8099914

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Transcript

ExChange Wales: Welcome to the Exchange Wales podcast, a series that explores research and practice sharing, evidence and care experience to build better social care in Wales and beyond.

Martin: Hello and welcome to this episode of the Exchange Podcast. I'm Martin Elliott, and today I'm joined by three members of the CASCADE Parent Group. I'll get them to say who they are and say hello. 

Cerys: Hello, my name is Cerys. 

Zoe: Hi, I'm Zoe. 

Leanne: And hi, I'm Leanne. 

Martin: So the group we've invited along today partly because I think what they're doing is really interesting, but also they're now an award-winning public involvement group.

And we'll touch on that a little bit more later on in the podcast, they're also published as well as they've now recently had a paper published, which they co-authored in the British Journal of Social Work. And we'll put a link to that paper with the podcast for people to read afterwards. So I guess to start with, be useful, I guess for the listeners to have an idea of what the CASCADE Parent Group is.

So CASCADE is the Children's Social Care Research and Development Centre. It's part of Cardiff University. So I wondered if you could explain a little bit about who the parent group are and the types of things that you do. 

Cerys: So, what we do is that we'll have people that work in CASCADE, our associates such as, Rachael and Josie, they talk to, research associates about, certain research that they think would really make do with a lot of public involvement, particularly from us with our lived experience.

And then we put in our five pence pieces towards it really, it's incredibly rewarding and, love every minute of it, to be honest. 

Leanne: The group, like some other groups, they're made up of people and the louder people take over. But, there's such a good balance within the group. And it's, and we are able to be authentic. Then the focus is on making a difference. And we encourage others to join. But obviously they need to be in that right space to join, because obviously we do talk about sensitive topics, which we do portray as stories, but they're not stories.

They're actually our life. And so they are life stories they're something that we've been through. So it's just making sure that you're in the right space if you would like to come and join. 

Martin: Thank you. That's really good. I think it's worth stressing that what we're talking about is a parent group where all of you have lived experience of contact with children's social services involving child protection investigations and in some cases the removal of children.

So, I think that's particularly why I think it, it's such an important group and why we wanted to do the podcast and talk about this because actually, historically, people have always said, oh, well it's very difficult to engage parents who've had those experiences in research, but you are a really important example of where that's done and I think other places could learn from what you've been involved in.

Is there anything else in terms of the group itself, so you get involved in, you know, advising and supporting individual research projects. So people like me, 'cause I've done it, I've done work with some of the group around individual projects and get your input into how we design studies and types of questions we ask.

But you're also involved, I guess, more broadly in how the centre runs, how Cascade as a research centre runs and in terms of questioning and challenging what we do and whether we are asking the right questions and looking at the right topics. Wondered if you've got anything you wanted to say about that?

Cerys: Yeah. Well, I think it's incredibly important, particularly in regards to social care, to hear the, experiences and voices of people with lived experiences, because within social care, you do so much interaction with people, and it's so incredibly important to get their voices heard because how are you supposed to change your system if you're not willing to listen to the people that the system is catered towards?

It does not work. 

Martin: Yeah, I completely agree. 

Leanne: And coming along to, to listen to us when you're wanting to do research and looking to a do a bid and asking what questions should be asked to other people, you know, it's raw emotion, we're, people that's actually lived this life, and lived through a lot of emotion.

So listening to us, like our raw emotion sometimes comes out that we cry, sometimes we can get a little bit agitated because it's important to us and we really want to make a change for the future. I always say, I might not see this change, but when my children are older, they may be able to say, that was my mum, that was colleagues of my mum's.

And that's what I live for, to try and make a change. 

Martin: Fantastic. Thank you. 

Zoe: I think public involvement is really important for research because we bring the reality into the room, and we are not just case studies and statistics. It's us as parents and our children who've gotta live with the consequences of these decisions.

But the decisions are very often made about us and not with us. I hope by participating with CASCADE that it helps turn my experiences, which were very negative, I hope that will empower change in the future and influence, policy makers' decisions, whether that's now or years in the future. I also find it very validating that there's a whole research centre dedicated to social care research. It also proves that there are flaws in the system. Otherwise, basically the research centre wouldn't need to exist. 

Martin: Brilliant. Thank you. I guess the next question is something about perhaps asking you about what you get from the role from doing it. Obviously you've talked a bit about why it's important for the research, but as individuals, I wondered if you could say something about what you get out of it as individuals. 

Cerys: I found for me personally, it really helps me find a way of where I want to go in the future. And I think as well it gives you that sense of freeing that you don't tend to get off a traumatic experience because when you're working, when you've worked with child protection, it is an incredibly traumatic experience and sometimes you've got all this kind of trauma in this experience, and you just don't know what to do with it. And this parents group offers so much positivity and so much freedom for you to do that, with, in such and a way in order for you to change, for you to try and implement changes for what's happened to you. I think it's brilliant.

Leanne: For me it's like, you know what, knowing I've had an impact, people remembering things I've said and going back and there's a quote that I've said that somebody's remembered that I've said, and then it's written down somewhere else, something else I've said. And I feel like I have a voice now where I never had a voice before.

I couldn't challenge things and I wanted to challenge things, but I was too scared to challenge things. So now I feel like, being involved and having that voice, i'm heard and it shows that I'm heard because it's like I said that yes, my name might but not be against it. But I know what I said and I know that was my wording and they've just said, 'a parent, said this', and yes I did.

And it's incredibly, it gives you like, I dunno, it feels like it gives you wings in a way. Like it just uplifts you and all your weight's lifted because you, for that moment, because somebody's listened to you. 

Cerys: And it makes you feel powerful as well, like, in a system that makes you feel so powerless, it really gives you your power back.

Zoe: Being involved with CASCADE has given me a strong sense of purpose and connection 'cause it's a safe place for myself and the other group members to share our experiences and we know that we are not alone in that. I find that there's something just really healing about having my experiences validated.

And not being told that is what it is, or that's in the past, that happened when you was a child, or that's years ago. It's also given me the confidence to talk about the flaws in the system, which many professionals are often in denial about. 

Martin: Thank you. So the next thing that I wanted to get your thoughts on was, obviously you've all been involved with the parent group for quite a while now, and based on your experiences, I wondered what you thought good involvement looks like, and I know you've talked about some of this already, but what for you are the key- if people want to involve people with lived experience like yourselves, what are the key things that they need to do or think about in order for it to be meaningful and done well?

Cerys: Well, I think for me, public involvement can't be tokenistic. I think it is incredibly easy for, researchers to say, well, I did include this person in this research and they gave us this and this and this, and there's not actually much talk about what the public involvement got out of it. There's not much in regards to possibly the after effects, whether that person got any help afterwards if it was a particularly hard topic.

I think it's just really easy to tag public involvement around and actually when you get down to the crux of the research paper, there is no public involvement at all or bare minimum and it's just not good enough. 

Leanne: Yeah, I agree. It's, thinking about the questions you're gonna go in, if you are gonna go in and ask someone that's been through trauma thinking of how you asked that question, how you could support that person through the questions, through the potential trauma coming back to the surface and also how you are gonna support them afterwards. Because it's really important for us to be involved, but it does not take away for the fact of it's still triggering. Yes, we wanna do it 'cause we all want to make a change and that's why we do it.

But then people will be like, "well, why do it then? If it's triggering for you, why do it?" Because if we don't do it, who is gonna stand up for us? Who is gonna stand up for our future children, our future grandchildren? I don't want my children going through what I've been through. So who is actually gonna stand up for the future generation if we don't?

So yes, we have to put ourself through a little bit of trauma, but also then how do we come back out of that? How do we leave the meeting feeling like we've done good, but feel supported as well? When you come out for social services meetings, you never feel supported. You're left, you're handed a piece of paper for a next meeting or a contact.

So it's just making sure parents feel supported. So it's thinking about the public and how they're going to feel. Yeah, it's great you're getting your research, but actually think about the people that's involved in your research. 

Zoe: So it's really important that the process is made clear and the researchers making it clear, what they're hoping to achieve from a session with you.

It's not fair for them to expect us to just share our story for no reason, I say story, it's not a story. As Leanne said, this is our lived experience. The positive thing I find about our involvement with CASCADE and any re researcher that comes to our group is it's totally our choice if we want to participate, we don't have to. There's no pressure. And I think that can be a really powerful thing for us because we've, probably had experience before where there's services involved and we've had to engage. We've had no choice but sharing our experience with CASCADE and the researchers is totally our choice. 

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Martin: So, as I mentioned at the start of the podcast, you are an award-winning group now at Health and Care Research Wales, which is the main funder of social care research in Wales, had an award ceremony the back end of last year, and you won the public involvement award, so well done on that.

The other thing is that, you are now all co-authors on a paper that was published in the British Journal of Social Work, and that was very much a co-produced paper. There were academics that were involved in writing the paper, but you are very much front and centre authors of that paper, and I wondered if you could say a little bit about your experiences of doing that and what you got from it and just any thoughts you had about doing it really.

Cerys: Well, I found coauthoring the paper incredibly validating. So if you told, me 10 years ago that I would be as part of an academic paper, I think I would've laughed in your face. But yeah, it was just so incredibly validating. And an experience like having our voices heard as part of an experience that can be so negative, that can be so isolating, that can be so restrictive and can really alienate you as a person, for it to be used in something like an academic paper and working with somebody like Sally Holland, who's absolutely brilliant, it was just a really amazing experience. 

Leanne: Yeah, I agree. It was like, what, little old me on a paper? No! Like to be a co-author on a paper, like for me, it's always been trying to find myself 'cause I was always, you always hear it in the supermarket and then you hear a little child go, oh, that's so-and-so's mummy, that's so-and-so's mummy.

But then it was like, okay, I'm a mother. My children has been removed, but now who am I? Because all I know is being a mum. All I know is, that's so and so's, that's that child's mum. And I said, well, who am I? Who is Leanne? And trying to find myself was hard work because, for a couple of years of my life I was constantly called mum.

Like people forgot I actually had a name, you know? So for me to remember who I was and to then be offered the chance to have my name on a paper, and I'm like, wow, just like, me. It was just incredible. It was an incredible opportunity, and to actually see my name written next to the likes of Sally Holland and even like these girls and everyone else is just like, wow.

Just wow. It's literally like the most, I dunno, rewarding thing I've probably done to date, except for my children. 

Zoe: Yeah, I agree as well. I found it very empowering to have my name on an academic paper, which we co-authored. That made me feel like our, experiences and knowledge were just as important as the researchers and professionals.

And during that time, we had a lot of support from Sally and the research team alongside Rachael and Josie from CASCADE. It wasn't always easy because I myself find academic language can be very intimidating, and during the process I felt like our participation was highly valued. 

Martin: I would encourage anybody who's listening to read the paper, I think it's a fantastic piece of work.

And I think in terms of thinking about both the sort of ethical, moral aspects of why we need to do this stuff and why there should be research which is inclusive and involves people meaningfully within that sort of ethos of nothing about us without us which I think is core to what CASCADE tries to do.

I think it's a fantastic piece of work and I think you should all be really proud of it. 'cause I think it's really good. So the CASCADE Parent Group is a standing group. It's an ongoing group. So it's a group that exists outside of a single research project, and quite often researchers will set up.

Lived experience groups or involvement groups around a particular research project, but you work across project and across the research centre as a whole, which I think is one of the sort of unique points about the parent group. So I wondered if you could say a little bit about how that works in practice, you know, how do you get involved? How often do you meet? What sort of things do you get involved and how is that supported? 

Cerys: So originally I came through this from, Voices from Care Cymru, the charity group, because they've got a separate, CASCADE have a separate group for them. And I came through the same charity.

There's about seven of us and we meet once a month. Most of it is online, but some of it's face to face as well. We make sure we have a craft session in place for the end of the year. 'Cause sometimes the research topics can be really tough. So we have a little celebration event at the end of the year, which is really nice.

And you can pick your involvement, you can get heavily involved, you can take more of a backseat. It really doesn't matter. And yeah, like you said, our research has varied. We've gone from parental advocacy to quantitative data, to a more recent one about mothers who have had, drug issues and with their children, with their babies over a 12 month period, the Willow study. So it's a very, very varied range of research that we partake in. But I think it's one of the things that makes it so exciting, to be honest. 

Leanne: Yeah, and it's a fantastic group. Like nobody, I hope nobody feels left out 'cause I certainly never have.

We always do it like a gentle ease in session. So one parent, one CASCADE member normally would meet with new people coming in like I believe I did for both the other girls doing this podcast with me today and they just get to ask questions, about the group, and we tell 'em a bit about the group.

And you know, it's led by them, what do they wanna know? And I just tell 'em a bit about it. So when they do come, you're not just coming in going, oh my gosh, I still don't know anyone on this screen. You can focus, oh, I know that person, I met them. And then, you know, I trust everybody in this group with my story, otherwise I wouldn't be here saying it.

And we all have a good relationship. I think we bounce off each other a lot of times with things that were said. It's just trying to build on that and everybody that comes in. It just feels like they've been here for the whole time. So it's not as if, oh, you've only been here like a year, and it's like, well, it feels like everybody's just been here the same amount of time.

It, there's no, I couldn't even tell you how long I've been here, but it just feels like I've been, I've never been without these girls. And we've actually just got our first dad, so we're hoping that'll encourage more dads to come along 'cause we do need dad's perspectives as well. As moms, obviously, you know, they're all very important.

So yeah, it's a lovely group and I wouldn't be without this group now. Do you know what I mean? So, yeah. 

Zoe: I'm so proud to be a part of the CASCADE Parents Group. What I very quickly learned was it's a safe space where all of us who are involved, we feel safe enough to share our experiences, which most of us can relate to because we've all had negative experiences of services.

Although we do talk about, heavy, difficult topics, we do also have some lighthearted conversations. We've all got, I think we've all got a good sense of humor. We feel very supported by the staff from CASCADE to facilitate our groups. We've had some brilliant opportunities. Like we had David Tobis, who came over from America.

He's the guy who started parental advocacy, and I'm really grateful for opportunities like that. The group is also very inclusive and the staff go above and beyond to make your participation as easy as it can be for you. 

Leanne: Yeah. And with like, Zoe was saying with the staff, they don't just say, yep, you can come along and we meet the researchers.

They actually consider and they meet the researchers before we do, and make sure they are actually a good fit to come along and speak to us and make sure that when they are coming along we are respected. So, a whole lot of thought and effort goes in from, the leads of the CASCADE, because obviously they don't wanna just stick us in a room with anyone.

So there are a lot of empathy from them, which is really nice because it's hard because when you've been through something, so traumatic, like people are like, oh, I get it. No, you don't. Unless you've been there, you don't get it. So for people that hasn't actually been there but can actually have the empathy because they can feel like you are upset and they can feel it coming from you to actually be able to give that empathy.

Is like tenfold. It's, people can empathise and sympathise, but you don't always, you are not able to always do that. So, especially with Rachel and Josie and a lot of the other members that we come across, they do have that pure empathy and it's not put on, it is pure and it's there, it's in them and it's fantastic.

Cerys: And I think as well going off what Leanne and Zoe is saying, like whenever we do end up partaking in research, after the session, they will always check in on us afterwards making sure that we're okay because some of the topics, like the girls have said, are incredibly hard and are incredibly traumatic.

And so even just the checking of, are you okay? And having that phone call and knowing full well that the person on the other end of the line is giving you absolutely zero judgement at all and is completely empathetic in what you've gone through, I think it's just, it's such a special relationship and I think it should be integrated into all public involvement, to be honest.

Martin: Just building on that, I've always had a sense that good public involvement should be about more than just going and asking people their views. And then taking them away and disappearing and you never hearing from them ever again and knowing what impact, what you've said or input into it has had. I wondered if you've got any thoughts about that and your experiences of that in terms of your involvement with CASCADE.

So, knowing what happened to those research bids that you contributed towards developing, knowing about the studies that get funded, what happens to those and how that's kind of fed back to you so that you, it closes the circle. 

Cerys: I think it's incredibly important because it shows that you are making an impact, especially in an area that's so, it's so academic, whereas if you weren't academic, it's very, very, it's a very, very limiting space. So being able to be a part of that space and seeing the work that you're doing, it is incredibly powerful, and I think I, I love hearing about what happens after each research study because it makes me think, right, there's clearly a gap in the market here.

Somebody else should do this bit of research, or maybe there's not enough done, or maybe it'll even, makes you think about a category of people that you wouldn't necessarily think about and then it leads you into more study with that. It just, it broadens your mind and it really opens up your perspective on just a multitude of things.

It's excellent. 

Leanne: Yeah. A lot of the times we do get, feedback, from it and we do get updates from, obviously the researchers about the work. Alright, sometimes it can take a year, because obviously some research doesn't happen overnight and we may not get an update, until I dunno, say we've done it in September and we don't get an update until the following September, but we do always generally get an update because, or, once it's finished and they've got to the end, oh, this is the outcome, this is what happened.

So it's really nice. And to be able to do it like, it is always, me against them. Like it, that always feels it's like me against them. They're the professionals. They know what they're talking about. But doing this with this group, it doesn't feel like that. It feels like we are all in it together.

And it is a nice feeling. And yes, obviously, they obviously, most them are their jobs. They're paid for these jobs and they are professionals, in a role. But it doesn't feel like that, you know? And it is a nice feeling that it's not, oh, you're up there and I'm down here. We always feel like we're on the same page, and I dunno about what you girls think about that, but it's a nice feeling.

Zoe: Yeah. We know as well that the staff at CASCADE would never allow a researcher to just come along to one of our groups and ask us these questions if there's no purpose behind it. We know how highly CASCADE value us sharing our experiences are, and we know that, yeah, although it is their jobs, they really do show that they care.

Martin: And I think that's the meaningful bit, isn't it? It is that thing about. I'm not just gonna come and talk to a group of people so I can say that I've involved you in inverted commas. It's about, well, what's the purpose? What's meaningfully am I getting from this? It isn't just a, well, I can tick a box and say, I spoke to a group of people with lived experience.

It's about how has what I'm planning or thinking about changed, or how has my thinking changed as a consequence of coming and talking to you and getting your perspective on the things that I'm thinking of doing and personally. 'cause like I say, both with Parent group and CASCADE Voices, which is the Care Experience Young People's group that the centre also has.

I always find it really valuable and to be challenged I guess, 'cause some of it isn't just you saying, yes, that idea is lovely, you should go away and do that, and me disappearing. Sometimes it's about going, that's a dreadful idea. You can't ask that question that way. And I think that's brilliant.

Acknowledging, like you say that there is power imbalances in this, in the relationship and the paper talks about that. It talks about, how we deal with the fact that we are still professionals and how we work with that and acknowledge the expertise that you have. Because it is expertise, 'cause it comes from real life, is as important as a social worker or mine or as a researcher or anybody else's.

Yeah. I think that's the thing. It's that sense of it not being a tick box. It's about feeling that you can challenge people and that they will take that on board. Would you say that's fair? 

Leanne: Yes. 

Zoe: Yeah. And even with the researchers, even if we are not actively taking part in their research, they'll come to us and say, do you think this is an okay way to ask the parent these questions?

Or what support do you think we need to put in afterwards? So even if we are not like actively taking part in their questions, we are helping them decide how they deliver that research. 

Leanne: And like asking the questions and more of a person centred way rather than a jargon way, 'cause it's very difficult to understand the jargon.

And when you're going through such traumatic experience, you don't wanna be asking what does that mean? So you try and look it up and sometimes you get the wrong answers. So it's hard work and people learn in different ways. So obviously you need to be asking the question in a way that somebody that's got A levels and somebody that's, not quite got anything that they could both understand.

Cerys: Plus going off, like what Leanne was saying about the jargon, I think it's very easy to have a power imbalance between the people that understand the jargon and the people that don't. I think it's very easy. I think it happens often, particularly in regards to the fields that, that me and the girls have lived through.

So I think it's really important to cut that out and just to talk to someone like as if they're a human being and not an academic piece of literature. 

Martin: Yeah, 

Zoe: Absolutely. 

Martin: I guess the next stage of what we do in CASCADE is, is getting more people with lived experience as peer research is actually being part of research teams as well as being part of advisory groups.

And I just wondered if the experience of being on the parent group makes you think that that's something that you'd be interested to do or that you could do and perhaps that you wouldn't have thought of doing before? Is that a fair question? 

Leanne: Yeah. 

Cerys: Yeah. A hundred percent. I mean, since CASCADE, I'm now on the Public Involvement board with CASCADE.

I'm also on the Masters of Social Work Board at the Cardiff University with Leanne. I'm currently partaking in another research based on health in regards to patients that have got Glioma and again, if you mentioned any of this 10 years ago, I would not have had a clue and I would've laughed at you, you know?

But here I am partaking in all this research and like I say, it's just so validating. It's just so validating and you go down this avenue that doesn't get opened up for a lot of people, particularly people like me. So it's just, yeah, it's very special. 

Leanne: Yeah. For me, I would say, if you don't think you can do it then you're completely wrong. If I can do it, anyone else can do it, you know? And it opens up other things like Cerys was saying, we're on other stuff that is a little bit of, it's not quite connected to CASCADE, but was evolved through CASCADE. So we go and do other things as well. And I think anybody that wants to try and make a change or even just get their story heard to try and help make any differences, you can say as little as they want to, but if you feel like this is something that you can do, then please, you don't have to do this- you don't have to do any of this public speaking. You don't have to put your name to everything. If you want to be on a paper, you can pick an alias. It doesn't have to be your name, but you'll know that's your alias. So if this is something that you think that you could do, then get in contact with us and we are more than happy to take you under our wing and you'll feel like you've been here forever like we do.

Zoe: I think that would be an amazing opportunity for people with lived experience to become peer researchers. Definitely. 

Martin: I think the point at which you've made that plea for other people to get involved and come along, 

Leanne: I didn't mean to! 

Martin: No, no, no, no. 

Leanne: [It just] came out. 

Martin: Yes. No, I think that's, that seems like a really nice place to stop, and thank you all for coming in and spending the time and recording this with us, and for sharing bits of your story and just some of your experiences. 'Cause I think both for other people that have lived experience like you do and academic researchers like me, I think what you've got to say is really important and is something that should have an impact on research going forward over the next decade.

Thank you ever so much. 

Cerys: Thank you. 

Leanne: Thank you. 

Zoe: Thank you. 

ExChange Wales: Thank you for tuning into this episode of the Exchange Wales podcast. At Exchange Wales, we connect researchers, practitioners, and people with lived experience to share evidence, practice, and insights that shape social care. Our work spans children's and adult social care, and we're also exploring the growing role of artificial intelligence in the sector.

If you'd like to learn more or get involved, please visit exchangewales.org