Paediatric Psychology – Adjusting to a New Diagnosis: How Do We Start to Live With This? (Part 2)

Specialist Clinical Psychologist, Maeve Cushnahan and Trainee Clinical Psychologist, Saskia Craig continue their discussion on adjustment. In this episode they talk about what the research says about adjusting to life with a health condition, and discuss ideas that may help families during the adjustment period.  
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What is Let's Talk with the Northern Trust?

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 2
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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 health care 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, and great to have you with today, we're talking about adjustments, living and coping with change and transition. So thinking about adjustment, one of the things that research says in terms of what predicts the child to manage this period of adjustment, and one of the things that research says is how do they perceive the health condition.

And really what we mean by that is, how do they view the health condition and the impact it has on themselves and in terms of the family system? So I guess what we're thinking of here is, whenever they're viewing this health condition, is it making a difference? Do they notice that things have changed in their life or the family?

And if not, well then we would predict that... They would adjust reasonably well. And I guess then the other perspective is if they do notice big changes, such as, you know, having to go to all these hospital appointments, not being able to see their friends, you know, that's going to really have a big impact on them.

And it's going to get us, you know, make the young person view their health condition, maybe. Not in such a good way. Not always the case, but sometimes they might think, you know, again, why do I have to have this? Or why is this not letting me see my friends or go to a party? And as such, then that really has an impact on how they view the new health condition.

And then what we find in research is leads to maybe difficulties with adjustment. Yes, absolutely. I think, you know, how does everyone in the system respond to this uninvited guest? Or do they look stressed to the young person? Is the young person aware of maybe others as feeling overwhelmed or rejecting of them?

And when that shows up, that's naturally going to make it more difficult for them to be able to come to terms with things. Or, you know, even that idea, I'm just thinking as you're talking there Saskia, of feeling responsible for how this guest behaves. So what we can hear quite a bit is that maybe a young person the...

emotional experience of others because they're the person

that has the health diagnosis. So in particular, I'm thinking of diabetes where, say, a young person's blood sugar is maybe going up and down. And as a result, they might be at a friend's birthday party and they might have to stop engaging in an activity, or they might not be allowed to eat cake at that time.

And I guess I'm just thinking about not only the emotional impact that has on them, but the young person might feel responsible. And I guess, again, that might impact how they view the health condition, whether that's maybe Positive or negatively, I guess depends on the situation and what they're being taken away from.

Yeah. And we do hear them talk about that quite a lot, you know, particularly that idea of inclusion. So one of the things that research does show is that the more that a health diagnosis affects the young person's ability to feel include included with something, the more difficult the adjustment. So for example, when we hear a young person in our sessions, Talk about, you know, feeling frustrated that they haven't been able to go to birthday parties or that they haven't been included in class decisions.

So whether that is, oh, there was a birthday party in school today, but I wasn't allowed to have any cake, you know, or I wasn't allowed to go on a seizure.

This is the kind of thing that, that really can be a predictor either for their ability to adjust reasonably well or for really, really struggling with the next point I wanted to talk about was that perception. So what does a young person think other people think about their health? diagnosis. So again, you know, for no reason, the young person might report that their teacher or their friends parents maybe are really worried about looking after them.

Um, for example, if they've got an epilepsy diagnosis, so the teacher might be very worried, or they might be sort of tiptoeing around the child during the class sort of day. And what we find is actually the child. really starts to maybe think about what, what do other people think about me and my new health diagnosis.

And again, it leads into that idea of responsibility where they're viewing themselves, I guess, as part of their identity with this new health diagnosis, which is new to them. And that's different for them. They're not just the young person by name. They might be now a young person with epilepsy or a young person with diabetes.

And that's really difficult for young people to try and figure out. For example, if for, you know, diabetes. Maybe what's their physical appearance, you know, about having to go out of the room, get blood sugars checked. They might be starting to, you know, worry about that. Is that fair, Maeve? Yeah, I think so.

It's just reminding me of the fact that everyone here is adapting. So, you know, when you're talking about a young person maybe adapting to something more physical about their health condition.

Um, or teachers may be feeling anxious or parents may be feeling overwhelmed or extended family not feeling competent to babysit anymore or talking about earlier, Saskia, that idea of something being your shadow. Yeah. You know, and there's no getting away from that. At times, you know, epilepsy might be not visible, so I'm just thinking about for the young person, their peers or teachers or friends or their, I don't know, their friends parents might expect more of them and forget about this shadow or this new diagnosis that they have.

And that's really hard for young people to be able to negotiate that with other people who might not understand what it's like to have that. It's And, you know, it's also comes back to what you were talking earlier, Saskia, about the importance of communication and how there's a lot, I guess, that sits on the young person to access the tasks that we hope they're able to do at the developmental stage.

So in the same way that we've talked quite a bit about How, you know, adjustment and coping depends on an individual experience, and it's also important to think about how we maybe explain a little bit about some of the difficulties that might be showing up for parents or carers at this idea of a small t trauma.

When we're talking about that, we're thinking about, you know, what, what is a trauma and how do you define that? And often one of the ways to think about a trauma is a situation whereby, you know, you have felt helpless. To fix it or to solve or to rescue and where it or life. And often when we're speaking to the parents of a young person who have had a seizure or who have had diabetes diagnosis, parents will talk about feeling that way, you know, helpless and as though their child's.

You know, safety, their life was in danger. So there's a nice little analogy, I guess, Saskia, within the research that talks about the different levels within our brains, if you want to think about it that way. So you think about this in a nutshell, and this is a bit of a whirlwind explanation. The first part of our brains to develop is meerkat.

So that idea of this is a brainstem and this is all about survival. It's all about vigilance and fight, flight, freeze. So what is it like for a baby who's first born? to survive. This is the stuff at the back of the brain? Yeah. Yeah. to our limbic system, which is the next level after the brainstem to develop.

And it is to do, I guess, with our emotional memory. It, it manages everything to do with our instincts and our mood and our emotions or our basic drives as we refer to them. So, not to get too complicated about it, but I guess it's the next level up from the development of the meerkat. Does that make sense?

Yeah. Yeah. And with the final level then being the monkey. So if we think about the monkey as being our cortex, our prefrontal cortex, so that's the part of the front of the brain, that's the third level up. And that's really the part that helps manage our social relationships and all that they require.

So I guess the idea is that, you know, that's the part that's a bit more freed up in a sense. Yeah. And what a, what a trauma will do will be to. Sensitize the meerkat is what they talk about in the literature. So that idea of reverting us right back to that idea of survival. And when we think about that, you know, if we are focused on surviving, well then there's not much else we can focus on.

So everything becomes about, am I safe? Is my child safe? What do I need to do to keep them safe? So we end up with a little meerkat, hypervigilant.

Alert. Alert, 100 percent yeah. Monitoring continually, looking out for threat all the time. So, what they'll talk about then is sleeplessness, difficulty concentrating, because how can you talk about what seems like trivial things? Whenever you feel as if your survival is at risk. Yeah, And we can expect that circumstance then would be irritable.

Why would they not be, so? The research, I guess, gives us a very biological framework to hang this on this idea of when we see parents or carers or a young person who is,

Hypervigilant and it's very normal. It doesn't mean it's pleasant. No. I suppose we hope that as things start some of this will ease.

And we'll find that when it comes to the point of maybe a health diagnosis, that families will be asking lots and lots of questions. And often those questions are from the health professionals, so they'll want to know maybe all the detail that they can get, if that's helpful, in terms of what is this health condition.

What is it? What are we likely to expect from it? How do we cope with it? What do we do? The important thing to flag up there is the idea of reeducation. It's very difficult at this point to to take in information. So what we're always encouraging families and parents and young people to think about is, do you need to ask a question Again, don't worry about have I been told that before?

So they need information. They need education, and they need a plan. Something that gives them a focus, something that allows them to have some sense of predictability or to feel some sense of control and something tangible. And that sort of tags into why sometimes for some people a diagnosis can feel like a bit of a relief because now there's something that felt very.

Uncertain. It's reminded me quite a bit of that bicycle metaphor of someone learning to cycle. You have a young person on a tricycle, they've got stabilizers maybe on, they've got someone holding the back of their seat. So their stage is to getting someone to cycle independently. You start with the stabilizers, you start with maybe taking one stabilizer off, you go then to maybe taking the next stabilizer off, someone running behind you holding on to the seat, And families do talk about that process of.

be minded and being supported to the extent that they need in those early stages. And then as time passes and their confidence grows,

being given the chance to diagnosis. And thinking then, I guess, about how do families find a new rhythm or routine. It's reminded me of that analogy of. The fight versus the dance and how whenever something comes into our lives like an uninvited guest, what we more than likely do not want them to be there.

And we can end up placing a lot of energy into that way of trying to get rid of them and trying to fight them. So for example, if you think about, you think about having a party and Someone you don't like turns up on the doorstep, and they are this uninvited guest, clearly, because you don't like them.

Yeah. But they really want to be part of your party. And you're aware that all your friends are at the party, you don't them,

pushing them out. When you get the door closed, they find a way in over the hedge, or they crawl in around the side get, you know, someone to boost them over a fence. Whatever it is, they keep finding their way into your party, and you're totally preoccupied with So there's two options. You can spend the whole entire evening trying to chase this guest out, or you can think about, well, how can I find a way to tolerate them being here so that I can still spend time with Yeah, you're right.

Definitely trying to think of what's important to me. Yeah. And I guess thinking about what are my values and what's more important, spending time with my friends or not spending time with my friends and arguing with this person.

And to always think about at the time of an adjustment is how can we learn to maybe dance even clumsily with something rather than to wrestle and try to fight them away. Um, and we think about them, you know, how far along this fight to dance spectrum, if you want to think about it that way, is each person is on their own journey.

And sometimes this just takes time. So I think for the next part, we're going to talk about how some families might have to continue adjusting and making changes. And that's really normal and expected because as we've talked about already, you know, even thinking about a child, if they're in say in primary school with a diagnosis of diabetes.

They're going to move on to secondary school and then after that, they might get a job or they might go on to higher education and with that, having diabetes, their life's going to change because I guess they're doing different things. They're interacting with different people and different things are going to be more important to them.

So I think it's important to recognize that it's normal. And is expected for families and the young person to experience different changes throughout, um, managing their, um, health condition. For one person with a diagnosis of epilepsy, you know, they might be happy to change medication or, you know, maybe try and wean off medication.

But for another person, they might not be wanting to do that. And it's really important to recognize that and really value, you know, that everybody really responds differently to these different situations. Yeah, everybody's got individual response, haven't they? Mm-Hmm. . Because I'm thinking even around those different transitions too, Saskia, you know, for a young person maybe with diabetes Mm-Hmm.

The different adjustments that may come with managing independence as they get older, or wanting to be independent with procedures themselves. Trying to learn how to self-inject, for example, or to do a set change for their pump. Or maybe even maybe that transition itself to the use of, uh, continuous.

Because monitor or a pump itself or in the flip side from a pump back to using injections because that's also a valid choice. Yeah. And alongside all of these continual adjustments and change, there's also the things that maybe show up like hospital stays that might not be prepared for. Or procedures that are needed, such as scans, that maybe, you know, weren't planned.

Maybe changes to their healthcare team, so people retire, people move. Um, and this can be a change in relationships. And then I suppose that eventual transition And as you mentioned earlier, all of this is wrapped around with the context of change that is just part of growing up. Definitely. And I think as well, it's important to talk about that actually people and families here are going to have to, I guess, adapt with the changes that this new health diagnosis brings.

And we appreciate that's not easy. And at times the young person and family members might actually feel what we would call burnout. And I guess thinking about that, where the family have to deal with this. unwanted guests all the time, such as diabetes or epilepsy. The family would use their peer support.

They also would use the MDT, just to know that you're not alone with trying to cope with this. Absolutely. And you touched on burnout there, Saskia, and that is certainly, um, a topic in which we'll be looking at, at a further podcast in the series. So Maeve, I'm thinking for the next part, it might be helpful to talk about What can the listeners do?

What sort of tips and tricks help? The first point on that one, Saskia, is to think about allowing yourself time. So, the first step is to acknowledge, you know, we are going through something here. It's okay to take time to deal with this and to try to go at your own pace. You know, think about that first transition of diagnosis, the amount that families and parents and kids are trying to take in, you know, information, new language that is maybe medicalised in ways that they've never thought about before, new people.

You know, people wearing different hats, so no longer are you solely a parent, but you're also maybe a teacher in some ways, having to teach people about this condition. You're learning about it yourself. You maybe feel like the police because you're having to put in rules and boundaries for a young person that meerkat earlier on and the impact for concentration, Of course it's going to be impacted upon because you're trying to absorb all of this.

So, as we've said before, ask for conversations to be had again if needed, and again, and again. And what level of information do you personally need? So, you can find in a family that one person might need a lot of information, another maybe not so much, maybe they don't want that. So, I guess the first tip would be to say, think about what you need and find a way to ask for it.

Definitely. You know, it's really important for families to think about, okay, well, who else in the family, or maybe even friends, do they feel like they might want support from? So thinking about, okay, is there extended families, such as grandparents or parents friends, where they're willing to help out? And to think about maybe, okay, maybe would you be willing to teach them some of these things so that you don't feel like you're...

Dealing with this by yourself. And again, you know, the young person and parents, you don't need to know it all. It's a learning curve and there's no pressure. And as Maeve already said, we all take this at different speeds. The second point to say, Saskia, is to be careful as to where you get your information.

Definitely. So the urge to Google will probably be pretty high, but we would caveat that with a warning to always, you know, maybe ask about reputable websites from your team or ask the questions to your team yourself, because, you know, sometimes we can come across things that are just not so helpful. I suppose the next tip to keep in mind Saskia really is to think about how a family can give again, you know, this uninvited guest its place.

Mm. In their lives, but also trying to, to balance the rest of your life with it. So we talked about this guest as being demanding and all consuming, and we know that diabetes and epilepsy will take all the time and all the attention that any one person can offer if they're, if they're given it. So I guess this is one of the things that's very easy to say and harder to do, but it is so important to make time for looking after other relationships as well.

Um, to think about actually how can I spend a little bit of time with friends or how can I spend a little bit of time by myself doing an activity I enjoy? relationships that will help provide a bit of balance and perspective when things feel overwhelming. Definitely. And again, another tip, which we've already mentioned today in the podcast, is that link in with your supports.

You know, it's helpful to think about who your supports are and if they're available and what you need at that moment. And this might change from time to time. It might be helpful to think about who's out there and what do they offer. For example, are they a listener? Is that what you need right now? Or do you need someone to help you out and organize things such as helping you out with appointments or getting you there to places and think about just really where their strengths lie and if that's what you need right now.

Absolutely. I think that's an important point, isn't it? Because people can be very well-meaning, um, but often the ways that they try to support might not be what you need. So yeah. What is it we need from each person to try to, to pull that apart? Another tip I guess is to think about what nurtures you and what drains you.

So are there things that drain you that are important right now? Are these things that can actually be set aside or put on pause, even just briefly? Or if they are important, is there a way to interact with them that makes them So I guess what we're talking about here is to think about is everything we're trying to balance all needing the balance right now or are there things that are okay to sort of try to set aside while we deal with what's right in front of you.

Definitely. Another thing just to say is the importance of self care. It's really important to recognize that.

Go back to the basics. We all need our sleep and food and water. Do you know whenever you're on an airplane and they've got the oxygen masks and the instructions are always, in the event of an emergency, put on your own mask first? I think this is a nice little metaphor for self care, which is the idea of we are not in a position to take care of anyone else until we look after ourselves.

And I suppose the last point to make really around all of this is to, to try to recognize when things are maybe feeling too much and when extra support and help may be needed. And if that is the case, who can best provide it? So is that something you can access within your family and your friends? Or is it something that maybe needs a little bit of support from the wider team?

What we would say also is look, everyone here is trying their best. So try not to beat yourself up for not knowing things or for not being what you perceive to be perfect because no one is.

On our next episode, we will be discussing anxiety, how this may show up for young people and how we understand this.

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 receive 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.

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