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A podcast from the Paediatric & Neonatal Clinical Psychology Service in the Northern Trust supporting the psychological and emotional experience of young people and their families, in living with health-related difficulties, or infants and families who need to spend time in Neonatal Care. The series will focus on providing information and sharing experiences that relate to families who are in contact with the Paediatric & Neonatal Services.
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Paeds Adjustment part 1
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Hello and welcome to the Let's Talk podcast from the Paediatric and Neonatal Clinical Psychology Service in the Northern Health and Social Care Trust. This series will consider and discuss a range of topics relating to the experiences of children and young people living with health related difficulties and their families.
We also provide a service to infants and families who need to spend time in neonatal care. Along the way, we will be joined by special guests, including young people themselves, their parents, and members of the healthcare teams who support the families. My name is Maeve Cushnahan, and I'm the clinical psychologist working within the pediatric diabetes and epilepsy teams.
With me today, I have Saskia Craig. Hi, I'm Saskia. I'm a trainee clinical psychologist working in the service. Thanks very much, Saskia. Great to have you with us. On our episode today, we're talking about adjustments, living and coping with change and transition. And Saskia, today we're going to talk a little bit about a few different things.
I guess to start with, what is it like being required to adjust and to change? So what is adjustment? What is it show up for us? How do we respond to it? What is it like with health in the mix? And what might it feel like? And also then to touch, I guess, on how we might think about coping with adjustments.
So the first thing to say, I guess, is that we adjust to change all the time. And the families that we meet with have often experienced and negotiated and managed many, many different adjustments and transitions by the time they even come to meet with us and in the time prior to having to live with a health condition such as diabetes or epilepsy.
So when we're thinking about changes that families. I'm thinking quite a bit about just the natural developments that happen over a lifetime. So things like maybe, you know, starting a new job. Some of the ones I guess can be quite positive and some of them can be harder. So maybe. Whenever you have to negotiate or deal with a bereavement or a longer term illness in a family and any stressful events, so it's not to say that every adjustment and change up until this point will have been easy, but to illustrate that point a little bit Saskia.
I'm just wonder, would you mind telling us a little bit about maybe some of the, the transitions or a change point that you have figured out in life and it had to do with at some point? Yeah, sure. I think it would probably be most helpful for the listeners to think about school, I think. Mm-Hmm. . After being in primary school, where you've got all your friends, who you know, and in P7 in particular, when, I guess, you've been there for seven years, and you sort of know the school, the teachers, and the buildings, and then, as you say, transitioning into a different school, you know, for me, I was lucky enough that I did know a fair few people who went to the other school that I was going to for first year, but however, there was lots of new change, new teachers, new timetables, new building, and again, lots of new pupils as well.
And I guess it's that idea of trying to start over again. And that can be tough, particularly whenever you think You know, you've got it all together, particularly when you're a P7 and thinking, you know, exactly what's going on. And I think, you know, change can be both positive and negative. So again, and I know I definitely find it helpful having, you know, your friends support and your family and, you know, doing all the sort of extracurricular activities that I would have enjoyed.
It's trying to start over fresh with, you know, meeting new friends or meeting new teachers and just even getting into a new routine. So
As well as some of the things I guess that any of us will be aware of when you're starting into a secondary school, and maybe, you know, maybe up until a certain point, you don't know exactly what school you're going to, but There's usually a rough plan around, you know, being able to get stationary together, being able to get uniforms together.
You know, maybe that idea of being able to plan for someone to be around home or to take some time off work if needed to help a young person make that transition. So for some of these planned changes, it allows preparation, I guess, there's a bit more predictability about it. So within the nerves that you're talking about, it also sounds like there's room there for excitement and preparation.
And that's such a, that's a nice part of those types of transitions. Yeah, definitely. So, I guess if we're taking that, that discussion on a little bit further, Saskia, what are you thinking about having changed into secondary level education? Even though those experiences can be tough, we tend to learn something from them.
We tend to learn about the things that help us. And you spoke there about the importance of peers, the importance of support, and recognition that that's important to you at times of transition and change. Yeah, I think looking back, you know, one of the main things was helpful to know that I wasn't the only one in that position, you know, whilst we all were starting a new school and it was daunting, but also exciting.
Everybody in my new year group was experiencing the exact same thing. And I think, as you said there Maeve, it's really important to rely on your peers and your friends. Some of my friends didn't go to the same, you know, secondary school as me. So it was even really helpful to be able to meet up with those old friends that I had, you know, in P7 before.
So I think, you know, maintaining those childhood relationships and then it's exciting to get some new ones in there too. It sounds like other people who are able to share your experience. So that idea of you're all in the one boat. Yeah. And certainly we hear that a lot from families. So there's something there about community and about not feeling alone and isolated and change.
I think having that
aspect of of control, which I know we've talked about really can help people make sense of things through difficult or maybe positive times as well. When you were talking there about managing that change, that, that one that you knew was coming into secondary level education, Saskia, we were saying there about how that was one that was predictable and one that allowed time for planning.
I guess it's making me think about that. That's often not. Something that the families we meet with have been able to have when it comes to, you know, living with diabetes or an epilepsy diagnosis. That's a very different circumstance. So this is more of a change that's maybe much less welcome or
can feel intrusive and can cause distress. You know, the health teams that we work with are meeting families at a time where actually they're dealing with something difficult and You know, adjustments and having to get used, I guess, to something that you didn't really want to get used to. We talk about
this idea of an uninvited guest and thinking about what would it be like to suddenly have an uninvited guest in our home. So just to take that a little bit further, if you could imagine, let's say a person, Saskia. Okay. Who is. It's really, really difficult. They can be selfish and demanding. They have zero consideration for your plans or your time.
They're only interested in their own needs and they really don't care about how that impacts other people. They don't care about what inconvenience it might cause. They call in unexpectedly. They don't give you a heads up. They make you feel on edge or they make you feel really angry. And also there's someone that you don't really know, so you don't really know how to respond to them.
Have you got that picture in your head? I do. Sounds pleasant, doesn't it? And not only have they popped in, but this, this uninvited guest
has decided that they you potentially for a long time. So you suddenly find them. in your living room in the evenings, you find them at your dinner table, you find them when you Tesco, you find them when you get, you're going on a night out with friends, they're always there. What might that feel like for you, do you think?
Very interesting to think about that yeah, but yeah, you know, when you were describing that, I think it's just really frustrating, would be the word. I find myself feeling really frustrated and a bit fed up, and I think, as you say, You know, if I had no choice in it, and again, linking back to that idea of control, where this new person's just popped in, and almost like my new shadow, it's very frustrating.
Absolutely. Feel like I can't get any space to think about things or spend time with. People I want to spend time with, so yeah, very frustrating. That's a very interesting point, actually, to think about them as your new shadow. So someone that you literally cannot get separation from. And just how that would be for your privacy, or for your independence.
Absolutely frustration, I can imagine. Anger, maybe. Exhaustion. All of those feelings. And I'm just thinking as well, you know, if this was you know, for somebody listening to the podcast today, for a young person who's maybe got a diagnosis of say epilepsy or diabetes. You know, I'm just thinking back whenever I was in school, you know, the importance of friendships and how I might feel that this new shadow, this new person entering in my life might be, I guess, getting in the way of that.
And again, thinking about those support systems we've just talked about saying, how does this person or how does this new diagnosis impact? I, maybe the relationships I have with other people. That's a good point. So that idea of, well, how does your peer group respond to this uninvited? How do this Well, so there's.
And I suppose the big question around any time of adjustment for any family or any young person is how do you start making room in your life for this uninvited guest? You know, how do you try to find a way to keep in touch with the things and the people that are meaningful to you, that you value, that are important in your life?
Even though this uninvited guest we were
to call this uninvited guest diabetes, or we were to call them epilepsy, I think it can often be sudden.
It can be scary and, you know, it's very often not wanted and that can be the really tricky, the tricky time around adjustment Saskia, I suppose just for the purpose of our listeners, would you adjustment is? Yeah, of course. So what is psychological adjustment? It basically is how we react or adapt in order to balance all the demands of life when a change happens.
Yeah, so a change has happened and you're trying to keep everything else that you're spinning in place and to balance that. So when this uninvited guest decides to stay, so it's how we organize ourselves. It's how our behavior
shows up and it's really important to recognize that everybody goes through very different things in life. So for example, two young people might be diagnosed with diabetes A, but for one person You know, they might get a diagnosis and it might not affect them that much in their day to day life. They might be able to still attend school, still spend time with their families.
And for them, you know, having this new invited person, such as diabetes, doesn't really seem to affect them or their daily routine. But that's not the case for everybody. You know, you might have somebody else who, for example, has a new diagnosis, and it almost feels like a whirlwind. It reminds me of almost thinking about being in a tornado.
You know, you're walking down the street, and all of thing comes towards you and you might feel like you're in this whirlwind and don't know how to get out of it. And I think it's important to say in that adjustment period, there's no real right or wrong answer to, or real no right or wrong way of coping.
We all cope differently, whether or not that's with the new health diagnosis or transitioning into school. copes with that. The same as other people. Absolutely. And Saskia, and I guess it's, you know, when you're talking about that tornado analogy, that idea of, you know, this thing comes in and sweeps through a family and It can bring things with it, but it also joins something within that family.
So what are that family already living with? It's making me think quite a bit about the, the way that you're talking about two young people, the same diagnosis, but often very different experience. We don't know what that tornado is joining. You know, we don't know. The different personality traits, we don't know maybe what they have been through and negotiated before, we don't know maybe how resilient they might be, and we don't know what resource they have available to them to deal with things either.
I think as well, Maeve, probably an important point to make is what age is the person diagnosed? I'm thinking for, say, a 6 year old versus a 17 year old. As you say, what's happening in their life and what's important to them will be very different things, nevermind from their social aspect with life, but also maybe their developmental stage in life and what's really important to them and their family.
Because often what we know from a health diagnosis in particular is that it can create a regression. So, you know, we find that when you're talking about that 17 year old. They will have developed, you know, a certain level of independence, they'll maybe be used to spending time with their friends in their way and being separated from their parents an awful lot more so their confidence around being independent and their wish for independence will be Typically, we will find we'll be with their parents or with an adult who's responsible for the majority of the time.
So you can see that a health diagnosis can come in and create a dependence where there has been independence. And that can be one of the hardest things for some of the teenagers who talk with to deal with. And even for their parents as well, who have. Who have this anxiety, maybe now around, you know, not wanting to separate as much from the young person or to have their young person be out and about, but at the same time want them that for them because they know that developmentally that's what they need.
And it's no wonder then, is it, that for some of the families we talk with, they really resent this, this tornado or this uninvited guest that's
It's meaning that they're prior to a diagnosis of a health condition, to some extent, you know, every family or every group of people will have found a way to live together. So they'll find their own dynamic, their own routine, their own rhythm of life. And it might not be things that we think about too much until suddenly they're being challenged.
And then you've got this, this diagnosis that comes along and suddenly. You've got this group of people who make up this family, this group of maybe
different personalities, maybe different sort of maybe with one person being relatively easygoing, with another person maybe really likened to have things planned and predictable, and suddenly they're having to try to figure out together a new routine and a new rhythm of life. And Yeah, it's no wonder that things are very much up in the air.
Yeah, definitely. I think it's also important to say maybe what do we hear from families from a daily basis? Do you think it's important to talk about that? I think so, yeah, because I think it touches on what you were talking about there, Saskia. Well, we can't assume, so like you were saying, you could have two young people, same age, same health diagnosis, and two completely different experiences.
And what we hear from families is that their experience of, I suppose. Adjusting to a change in their lives or to responding to a diagnosis of epilepsy or diabetes is dependent on what they have been through before. It's making me think particularly about the experience themselves in the lead up to diagnosis.
There can be quite contrasting experiences. So sometimes we'll hear families talk about, you know, having maybe noticed a symptom or something that was a change for the young person. where they have just not been quite themselves, but maybe not fully unwell. And they have went to maybe the GP for a reason.
And a diagnosis has come from that. So it's not to say that that experience of diagnosis is by any means easy. It's certainly not. I suppose I'm thinking
that where someone has been very unwell and required a hospital admission in an emergency circumstance. Or maybe where there has been experience of seizures over a prolonged period of time because, you know, I suppose what we do know about the two conditions is that they differ in that often where a family experience in the lead up to diagnosis
of diabetes. You know, where often the epilepsy diagnosis can be quite prolonged, you know, it can take months. For more than one seizure to have happened or for investigations to have been started or for those kind of conversations to have been had. So often by the time someone is diagnosed with epilepsy, they have actually been living with the uncertainty Yeah.
Whereas with diabetes, it tends to be much more sort of condensed in terms of time. So yeah, I mean, I suppose that's, that's one of the first things I think about whenever you're asking that question of what is it like for a I think it's also important to recognize each individual in the family will have a different experience of the memory of it.
So what I mean by that is for some young people, depending on the type of epilepsy they've been diagnosed with, they might not remember the actual seizure event itself. However, for their parents or sibling or anybody else, friends who are maybe bystanders to it, they might have different. memories or different, I guess, feelings towards what's happened because of what they've witnessed.
So it's important for us as psychologists what we would look at and really help families recognize is that every person in the family is different with their experiences because of these memories. So that's why you might have sometimes people feeling really scared or worried if they've witnessed these episodes, or you might have somebody who's a bit confused or they maybe I'm not sure what's going on because as I say, maybe depending on the type of seizures that they've had.
Does that make sense, May? Oh, totally. It's also making me think very
clearly about, you know, the times where we're You know, blood's taken maybe repeatedly, or certain procedures completed, and yet when we ask the young person, how was your hospital experience, they'll say the food was lovely, there was, you know, so it's the difference between that and, and you're right, it is absolutely about how, how we interpret things, what we observe and witness, and then the feelings that that brings up from that is very different.
And I think that leads into the next part is that depending what the person's memories, experiences, feelings are. mm-Hmm. You know, those things are gonna really affect how the person copes. You know, it's making me think that some of their old coping strategies, they might have been really effective in other situations.
Yeah. And in this new situation with a new health diagnosis, that's not to say that they maybe aren't still effective, they might be, but it's quite common for families that we meet what they're saying to us really is that the old things or the old things that got them to cope with. Difficult times before, well actually now they aren't working.
And I guess that's one of the things we would do in our sessions, is we would explore what things can we do to help the family cope now with this new health diagnosis. Yeah, that recognition of, I've always coped this way, why is it suddenly not working, and to recognise, look,
Maybe the way I'm trying to cope with this is not Saskia, about, you know, the fact that a family is made up of different people, you know, so whether you're talking about immediate family or extended family, we all have our own personalities. We all have our own approach to dealing with pressure and stress and we all have our own coping strategies and sometimes it The coping strategies within a family are compatible, you know, so, so it wouldn't really be uncommon at all for us to speak with families in the early stages, following any transition or change, whether that is diagnosis or whether that's a later transition and to hear almost what feels like tension, because maybe for One person is coping by being super organized and planning and knowing all of the information that's needed and having everything arranged to a T, whereas another person is maybe a little bit more like, I don't want to think about this all the time.
I don't want to talk about it all the time because I don't, I don't deal with it that way. So this compatibility or incompatibility of coping strategies, it can have quite a big impact. I think, you know, what you've said there was really true because it was making me think about the young person might.
Withdrawal, or they might sort of have all these feelings or worries or thoughts in their head and often what we would see is they keep them to themselves. Really makes sense why someone would do that because they've got this new thing in their lives and it's probably going to be really hard to talk about it when for a young person they've just been diagnosed and they're really trying to make sense of what's going on.
So if they're trying to make sense of what's going on, well then how can they really communicate it to their parents or friends? So Saskia, that really brings us on to thinking then about that, that important question of what might, what might a family expect to see around the time of a diagnosis or around the time of a big adjustment, whether that's a later transition or not.
And the first one being, when you're talking there about. Someone was drawn and we can see behavior changes, you know, and particularly for, you know, a child or a young person these behavior changes tend to come either in that internalizing way, which is what you're discussing there around that idea of holding in, you know maybe become a quieter, more withdrawn, less engaged, less involved, and that can be very, very worrying for other family members to see.
And siblings as well. Absolutely. Yeah. Yeah, absolutely. It's, it's, and that's an important point, isn't it, that siblings are also going through adjustment and change here. They might not have, you know, themselves a diagnosis of something, but they're trying to cope with changes and this new And then on the internalizing, sometimes we see behaviors externalized.
So behavior changes, like maybe you know,
maybe argumentative, maybe, you know, outbursts emotional wise, maybe present them as quite angry. Maybe they're trying to figure out the boundaries and this is the other thing that can happen with any transition and change is that the boundaries that are set within a family can be different. And that can be unsettling for a young person, so they may be trying to test out and say, right, okay, where are the boundaries now?
You know, it's not uncommon for parents to say to us, you know, it's really hard to hold a boundary in place for them or to have. Expectations for them to do chores, for example, around well, actually,
what are we saying to a young person whenever we are we are saying to them with that is, you can still do it. I still have an expectation for you to do things. I still know that you can manage this, even though this other health issue is in your life. So. You know, it's a, it can be very try and time, I think, for, for families to figure out what the new boundaries are.
It just makes me think, you know, as well, I wonder how that is for the sibling if they are expected to do chores. And as you say, then there might be a difference in the dynamics and relationships in the house. And that's really. Parents, but also for the young people themselves. Yeah. You can see how that, that dynamic could very, very, very quickly create resentment.
Mm. And it's, it's almost like you're asking parents or carers in this situation to have their eyes on so many things that are trying to be managed within a family and how parents are being required to keep. And I have so many different factors all at the one time, like how is this young person with a new diagnosis coping?
How is their siblings doing? How are they as parents or carers managing, you know, what is it they need from the healthcare team? So there's a lot going on, isn't there? It's very complex. It really, really is. And then we think about actually the other, you know, side effects that we hear about, which are things like.
How difficult it is to concentrate when
something like, Oh, of course, but actually in practice that has a huge implication. So school, school, yeah, absolutely. School or work, even socializing with friends, thinking, hmm.
If there's any parents listening to this, you know, we do recognize that they have so much to juggle really, and you know, it's not like there's any rule book for this. You don't get taught this. And again, this new diagnosis has just entered their lives and it's really hard for parents to manage that.
And I think as well, just like the young person who's got a diagnosis or. The young person's sibling, how parents react is completely different as well. It can be based on past experiences, you know, that unpredictability that comes through again. But I guess some of the things we do see is that parents sometimes can withdraw from social contact themselves.
Mm-Hmm. . So that might mean that they used to see their friends every other week at the coffee shop. They might. not want to do that anymore, whether that's because they're worried and focusing on their child now because they've got this new parent health care role to play, or maybe it's that they're tired because it's energy consuming for them too, or they just don't really feel like socializing because they might worry that, well, their friends won't understand because they don't have children themselves or people they know who have a diabetes or epilepsy diagnosis.
So it's important to recognize that for The parents or the carer of the young person, really, that it can be lonely and quite confusing for them too. And that's something that we really want to highlight in this podcast is that.
Again, the health diagnosis just doesn't affect the young
person, it affects the whole Saskia, Self care and it's always aware that it's so easy to say the word self care and yet so difficult to do it, you know, it means a lot and we don't want to be just making that a tick box exercise, but often the thing that we do speak with parents or carers about is that idea of how can you try to introduce social contact again?
You know, the instinct may be. To withdraw and to spend time, you know, focusing on mind. And that will be absolutely very appropriate in these very early stages. What we hope is that with time and as things settle or as things be maybe a little bit less immediate, yeah, that they can start to reintegrate again.
And I guess that's one way that we would encourage families to support one another is maybe just be a bit curious and observe what other people might be showing on the outside. So when we were we might notice, I guess, Saskia, and I'm thinking then, you know, there's also the other part of that, which is the emotional expression and how you just very natural and expected it is to be noticing heightened emotions at the transition and change.
Whether that is tearfulness or anger or sadness or anxiety, maybe more clinginess what we do tend to hear families talk about is the fluctuation that can happen with this and it can just feel like a rollercoaster that works both ways. It's for a child and a parent and a carer. So it is a very, very understandable reaction to see a lot of heightened expressed emotion that changes very quickly.
And just to sort of highlight that for our listeners that, you know, if this is happening for a relief.
And a health diagnosis, but I guess if, if a family have been living with, for example, maybe seizure experience for a prolonged period of time with a diagnosis, there can come a plan and an explanation for things and maybe options for treatment and a team of people around a family that are now there to support.
And a health diagnosis episode. In the next episode, we will be looking at what research tells us about adjustment to a health diagnosis and the practical ways of coping with this, which we hope you will find helpful. Thank you for listening. Thanks so much for listening. In the podcast summary, you'll find a short survey link, which we would really appreciate you take a few minutes to complete and help us to the podcast you've been listening to today.
There will also be a link to the Northern Trust website about our service, what we offer and information about other podcasts in the series. Thank you.