On sibling relationships and Williams syndrome, with Dr Katie Cebula

Dr Katie Cebula is a developmental psychologist at the University of Edinburgh whose research explores family relationships, particularly sibling relationships in families with a child with developmental disabilities. During this podcast she chats to Sue Fletcher-Watson about a piece of research that explores sibling relationships when one child has Williams syndrome.

You can follow Katie on Twitter here.

The paper discussed in this episode is:
Cebula, K., Gillooly, A., Coulthard, L. K., Riby, D. M., & Hastings, R. P. (2019). Siblings of children with Williams syndrome: Correlates of psychosocial adjustment and sibling relationship quality. Research in developmental disabilities, 94, 103496.

Transcript

Sue: 0:09

[Podcast jingle][ringtone] Hello? Oh, it is recording. I see the little figure. Okay, great. I will do my little spiel and then I'll introduce you. Nice. Okay. Here I go. Hello, this is Sue from the Salvesen Mindroom Research Centre at the University of Edinburgh. And, um, we're recording another podcast during the COVID-19 lockdown. We wanted to do something for practitioners and parents and university students who are all stuck at home, but who still want a chance to kind of develop their knowledge even during the lockdown. Um, and we also felt that because lots of folks are homeschooling at the moment, and our usual family routines have been disrupted, it seems like Developmental Psychology is a really interesting topic for people right now. And I'm a developmental psychologist and I know lots of other developmental psychologists. So I'm calling some of them, um... people who are studying learning and development in children and young people to find out about some of the research they've been doing. And today's PsychologiCALL is with my dear friend and colleague Katie Cebula from the University of Edinburgh. And she's going to talk to me about some work she's been doing, uh, looking at sibling relationships in children with Williams syndrome. Is that right, Katie?

Katie: 1:23

That's absolutely right! Nice to see you, Sue!

Sue: 1:25

Nice to see you too! Thank you for joining me! Um, so tell me, what did you discover when you were doing this bit of research?

Katie: 1:34

So I guess some of the main findings from this were, firstly, very broadly, that emotional and behavioural adjustment and anxiety in siblings of children with Williams syndrome is actually really similar to children in the rest of the population on average, right? It's really, it's really not that different. Although we see individual differences across siblings. Secondly, um, we looked at what siblings themselves said compared to what their parents thought, and we found that, although there were some similarities, siblings report things being a little bit more tough, a little bit more conflict in their sibling relationships, for example, than the parents maybe thought was going on. And thirdly, I think a really kind of wonderful thing we found was that siblings reported feeling really high levels of support from their parents, from their friends, and from their teachers.

Sue: 2:35

That's so nice. Um, I love a study that has a good news story in it.

Katie: 2:40

Me too.

Sue: 2:40

Um, so what led you down the road of, of studying this question of exploring these, um, experiences of siblings?

Katie: 2:48

So I guess I've-, I've really been interested in sibling relationships for, for a long time, um, as you know. I think it's, it's important when we look at siblings of children with developmental disabilities, not to really sort of pathologize the relationship, right? It's, you know, it's just siblings with all the kind of, like the joy, and the arguments and the, you know, and the love and the angst that siblings kind of have. But at the same time, we know that if you're growing up with a child with developmental disabilities in the family, that that can bring some... like some unique experiences, some important experiences, um, some of which might be really positive and some which might be kind of challenging. So I've always been, I think for a long time, in this research field, really kind of motivated to find ways to help, uh, parents, um, and carers to support those sibling relationships, to, to help siblings find ways to, to play and to, to be together, um, knowing, knowing how positive and how important sibling relationships can be, uh, you know, throughout, throughout your life. So we kind of started from that, and Williams syndrome in particular seem to be really interesting. It's a really rare genetic syndrome. It's uh one in, around one in 20,000, um, individuals have Williams syndrome, um. It's associated, um, as you know, with intellectual disabilities, but also, um, a really quite characteristic kind of, um, phenotype or profile. So we know that, uh, lots of people with Williams syndrome have a very strong kind of social, um, interest in sociability, but also sometimes quite high levels of anxiety. And we were then really interested in what that meant for sibling relationships, what it meant to be growing up in a family with a child with Williams syndrome. And no one had really looked at that, um, before, so that's kind of where we started from.

Sue: 4:48

And so how did you go about doing the study? How did you collect the information you were interested in?

Katie: 4:54

So it was in some ways fairly straightforward. It was a questionnaire study, uh, across the UK America, Australia, Canada, um, because Williams syndrome is really rare. It's, it's difficult, you know, it's challenging to find participants, but then to find participants, um, in families where the were siblings, you know, uh, made things even a bit more of a challenge. And we were really fortunate. We had really good support from the Williams syndrome foundation, um, in the UK, in various Williams syndrome groups, um, in other countries. So basically we carried out a questionnaire study and we had lots of, lots of questionnaires. We're really grateful to the families because, you know, we, we asked quite a lot in terms of filling in lots of paperwork, but we asked about the child with Williams syndrome, so, um, kind of social functioning and anxiety, we asked parents about the sibling, so emotional and behavioural adjustments, levels of anxiety. We asked about the sibling, like the quality of the sibling relationship. Um, and what was really important, um, in this study was that we asked, um, we asked, uh, for the siblings themselves, if they would fill in questionnaires as well as asking their, their parents. So we had, we had both views and importantly, we heard from the siblings themselves.

Sue: 6:20

And so with that kind of study, which, um, which I've also done, you know, there's kind of huge w odges of questionnaires going out in the post or online to families. One of the issues I've found with analysis is just the sheer volume of, of information you get back. Um, even though it's very well-planned and you've been very careful about what you're asking, there's so many different ways you can combine that information to answer different questions. So how did you find, when you were doing the analysis, how easy was it to decide what to analyze and how to put that information together?

Katie: 6:57

I think, I mean, there were challenges. We went, we went old school with paper questionnaires, um, in part, in part, because we were keen that it was accessible to families who, you know, maybe weren't, um, online, um, quite so frequently. So we had all the, um, data entry to do the, the analysis was, it was fairly straightforward and we were sort of guided by some clear questions in terms of, um, what we were looking at. And so on. I think one of the challenges though, was that we had in the analysis, we had these two kind of overlapping datasets. So we had data from, um, over 40 caregivers, I say over 40, it was 41...

Sue: 7:42

[Laughs].

Katie: 7:42

...Um, caregivers. Um, and sometimes we use that full dataset, right. And then for other parts of the analysis, we wanted just to look at the subset of those families. So, um, more like 30 families where the siblings had also themselves contributed data and filled in questionnaires. So sometimes we only wanted to look at the families where we had both sets of data, the sibling and the parents, so we could make a direct comparison between the two. And I say, one of the challenges, not so much for the analysis, but for the writeup was communicating really clearly about when we were kind of switching between these various, you know, these similar overlapping, but, um, sort of distinct, um, dataset. So it was, it was clear to the reader. Um, and there we had, we had really good support from the reviewers of the paper. And also I think a little bit of, it took a little bit of theory of mind in a way, you know, you have to put yourself in the, in the shoes of the reader and think"right, okay. I, you know, I've been doing this for months, this makes sense to me, but what's it going to feel like being a reader kind of come into this, um, like new, you know, and fresh".

Sue: 8:55

Mmh...So, so going back then to what you found, um, uh, you found that, um, siblings were feeling pretty well supported, um, though at the same time, maybe had a slightly more negative appraisal of their... the challenges they face than perhaps their parents did. Their parents were a little bit more positive about the difficulties that they were, um, or about, about their development, you know, their kind of adjustment and coping and so on. Um, what do you think we can... So correct me first of all, if I'm wrong in that summary.[Laughs] Um, but also what do you think we can learn from this? You know, what does that mean for people with Williams syndrome growing up, for their parents, for their brothers and sisters, and so on?

Katie: 9:45

I think... I guess, to me, one of the main messages from it is, is really just the importance of listening to the siblings themselves, right. You know, being able to listen to them about their view of sibling relationships, whether it be the parents who are doing that or support organizations, um, and so on. Mindful that, you know, even if things aren't-, aren't really bad and really tough, um, there still might be a little bit different from how other people perceive things to be. And that's, it's not saying that-, that one view is correct, and one view is, is incorrect here. Um, you know, we're not saying the s-, the siblings are correct, and, you know, the parents have misjudged the situation, just that there might be slightly different perspectives on it for, for all kinds of different reasons. And that's not something that is unique to families with a child with developmental disabilities, right. Always, you know, it's very common in families that, you know, parents' take on things is a little bit different from how the children would see it. So just, I guess, showing that it's important to listen to all those different um... perspectives. Um, I guess another, another thing we've found that I kind of feel had, um, you know, was important in terms of the implications, was that we also, you know, we did a little bit of a regression analysis, and found that conflict in the sibling relationship was, uh, associated with emotional and behavioural difficulties or, you know, adjustment difficulties in the sibling. Um, and obviously that, you know, we don't know the direction of causation, but obviously it makes sense to, to seek for ways that we can reduce conflict, um, in sibling relationship. Obviously a little bit of conflict is not always a bad thing, and it can be a useful way for children to learn how to manage social situations. But, you know, we need to look and speak to families and understand if there's times we need to try and support and reduce kind of levels of conflict. Um, and I think that combined with the finding that, um, sort of more positive adjustment in siblings was associated with them feeling like they were well supported and had high levels of support, all those kinds of things to feed into this idea that we need to look for the best ways to support families, look for the best ways to create that support that came from, you know, sometimes it came from school, sometimes it came from parents, from friends and so on. And I think, I guess, look into organizations like Sibs UK, like the Salvesen Mindroom Center, um, and look at how they're, they're helping families to, to support those, um, sibling relationships, and looking to help schools to support those sibling relationships. And I guess, you know, helping siblings to find ways to, to be together and play together and so on.

Sue: 12:49

And then there... I mean... Obviously right now, as we're recording this during the lockdown, it's harder than ever to, to support brothers and sisters who are living together and, you know, occupying quite a small space, and competing for their parents' attention with perhaps, you know, their parents also working and so on. I mean, it's, it's a tough time for sibling relationships. So have you got any insights into sort of simple things that parents can do that are supportive? Is it enough to reassure people that it's okay to get annoyed with your brother and sister, for example, is that a useful thing to do, or, you know, are them or concrete things?

Katie: 13:32

Yeah, absolutely. And I think... I think... I think there's a range of different things. I think looking to, for example, Sibs UK have fantastic resources, and they have resources for parents, and they have resources for young people themselves. So, so looking for what's out there. But also in the, in the day-to-day, yes, knowing that, you know, there'll be, there'll be times of difficulty, there'll be times when siblings need, you know, as far as you can within your house, need a bit of space, a bit of time, um, away from each other, or time, you know, just on their own with a parent or carer, um, you know, to get a little bit of that, um, one-to-one time. But I think for parents to not, you know... There's a, there's a lot going on just now and it's, I mean, at the best of times, it's impossible to be a perfect parent, you know? Um, and so just to think... giving yourself a little bit of a, an easy time too. I'm really, I guess over the years, one thing I've kind of come back to a lot is, um, you know, family systems theory, which, uh, you and I have discussed before, but just this idea that your family is not made up of individuals, you know, it's, it's, it's this system where if you're affected by something, you know, that that kind of impacts how you interact with other members of the family, that then has a knock-on effect, um, to them. And you get these sort of ripple effects to the family, and so just, yeah, giving-, giving yourself a... a break and, and knowing that, you know, families are going to interact and impact on each other in positive ways, um, as well, it's, it's not, you know, within our family it's nice sometimes you see a bit of humor that sparks in two people in the family and it's, you know, it sort of spreads and it ripples a little bit, um, which isn't always easy to, to do, but you know, nicer isn't it.

Sue: 15:38

Yeah. My favorite example of that, I always quote this to, to friends of mine, maybe when they've had their first child, for example, is um, you know, when you go on a plane and they, and they're talking about the, the oxygen mask may drop from the ceiling and they're like put on yours before helping your child.[Laughs] And I always think this is a great lesson for parents, right? Like you can't look after your children, if you don't also first look after yourself, and it's okay to sort of take care of your needs as a parent, in order to then have the energy and love that you need to give to your children. Right?

Katie: 16:15

Yeah, absolutely. And if this, in this case, it's a tub of ice cream rather than ox-, an oxygen mask...[Laughs]

Sue: 16:21

Sure![Laughs].

Katie: 16:21

So be it!

Sue: 16:21

[Laughs] Yeah. Yeah. Um...

Katie: 16:25

But I think, I think too, I mean... Kind of more seriously coming back to, to... you know, this issue of support, and okay, you know, sometimes there'll be, um, fall-outs between siblings and so on, but also, you know, in that that's, you know... all, it's all common, but sometimes too, knowing when you need to reach out for support from, you know, from an organization or from elsewhere, when you need to ask for help and albeit just know that help... You know, and it's tough for families just now, cause that help can't at the moment often be grandparents coming around or, you know, or respite care, um, or whatever that might be, but, but s-, you know, seeking support from others in a sort of online, um, way too, I think when you need it can be really helpful.

Sue: 17:18

Hmm. Um, so just, um, one or two more questions before we wrap up, what, what would you like to do next kind of building on this research? What's your...?

Katie: 17:30

So many things![Laughs] So many things! I guess, overall I was with this paper, like, I love, I love this paper. I loved writing in this paper. Um, but a little bit of frustration I had with it was that we had lovely qualitative data from the siblings about their experience of, uh, growing up, uh, with a sibling with Williams syndrome. Um, and it really, it was something that really informed our kind of thinking and our, our plans. We had to take it out because the paper was too long. Um, and you know, me how I love my details in papers.

Sue: 18:05

Yeah I do![Laughs].

Katie: 18:05

Um, so that hurt. So I had to take it out, but I think we really... We took that and, um, felt it was really important to, to hear, um, you know, more at length from siblings themselves, but also to explore the views of the children with Williams syndrome, um, about their sibling relationships, right? So we've gone on from that to undertake interviews with, uh, children with Williams syndrome themselves, um, and their siblings, about their experience of the relationships. Um, and we're working with that data just now. Uh, we've also filmed siblings, uh, playing together at home to try and understand more about how siblings interact and support each other, uh, during play. Again, you know, with this aim of kind of supporting families to support those sibling relationships. Um, and I, I guess one thing I'd point out is I'm saying we've done this, um, should be clear that the amazing Amanda Gillooly, um, did fantastic work. And she traveled across the UK, she was on cars, taxis, planes, uh, to collect all this data from, uh, across the whole of the UK. So, um, so I say we, but actually Amanda did, um, huge, huge amounts in terms of working with families on this.

Sue: 19:28

So that is a perfect segue, shout out to Amanda, for my last question, because I wanted to sort of think about early career researchers and students who might be listening, who are in a stressful position, um, you know, all sorts of uncertainty about degree courses and about, um, future study and about, um, lots of work having been derailed as well. Um, so I wondered if you had any words of wisdom for[laughs], for our colleagues who were kind of maybe, um, a little, uh, nearer the start of their careers than you and I are now?[Laughs]

Katie: 20:08

I guess, I mean,"words of wisdom" might be, might be pushing it a bit[laughs], but, um, I guess, I mean, I guess for me, you know, I've been, I've been uh, I've worked part-time for more than a decade now, and I think in some ways that's been... That's been really helpful in terms of just, you know, I know that it is not productive for me to compare myself to other people, right. Because, you know, by definition, you know, I don't work as many hours in the week, you know? And so I think I've really, in a way particularly coming into the situation we're in at the moment is it's, it's really helpful just this, you know,"don't compare yourself to other people, just, you know, follow your own path and find a good mentor". I've been, I mean, I've been so lucky throughout my, um... throughout my career in terms of the mentors I've, um, I've had, um, and that's been incredibly supportive. And I guess, I mean, particularly in relation to maybe people working within, uh, intellectual disability or developmental disability research too, is, is I think that the importance of, I guess, doing... doing research that you believe will make a difference, even if it's, even if that research takes time to do so. I guess, you know, particularly in, um, this kind of project that we've been working in, you know, um, recruitment to studies takes, takes time. You know, we're, we're working with, um, you know, children with Williams syndrome, which is a, uh, a rare syndrome. Um, so recruitment takes time. Um, when we're doing the observation work, video analysis work is, is slow. It's, it's very time consuming. Um, but you know, we, we do it because we're interested in it, and we think it's important, and we, you know, when we speak to families about it, you know, that's the kind of thing families are asking about, it's about supporting sibling relationships. Um, so I guess that would be my... Does that count as words of wisdom?

Sue: 22:23

100%!

Katie: 22:23

Oh okay![Laughs]

Sue: 22:23

We're lost in amounts of wisdom! And the, you know, the way he was stroking your long white beard...

Katie: 22:29

[Laughs].

Sue: 22:29

... That really enhanced it for me!

Katie: 22:30

I see, we've been in lockdown for a little while, but I'm not sure it's been quite that long![Laughs].

Sue: 22:33

[Laughs] Um, so I'm just gonna thank you very much for your time and, um, let anyone listening know that they will be able to find out more about your work, and specifically get a link to the paper on the podcast page, which will be ed.ac.uk/salvesen-research. That's a nice catchy URL that's easy to remember[laughs], and I have to get ourselves a quick link. Um, but for now, thank you very much, Katie!

Katie: 23:08

Thank you Sue! Pleasure talking to you!

Sue: 23:11

Enjoy the rest of lockdown![Laughs].

Katie: 23:11

Likewise![ringtone]

Sue: 23:17

Okay we did it! I thought that went quite smoothly![Podcast jingle]