Paediatric Psychology - How a Psychologist Can Support Children and Young People Living With a Health Condition

We meet Specialist Clinical Psychologist, Maeve Cushnahan and Trainee Clinical Psychologist, Saskia Craig as they discuss the role of the psychologist in paediatric teams: what it is that Psychologists do, and what young people and their families can expect coming to a Psychology session. 
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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 EP1
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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 paediatric 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. In today's episode, we are discussing what psychology is and how we fit into the paediatric teams looking after the health needs of young people.

So Maeve, I think one of the most important questions some of our listeners might have is what is psychology, what's it all about and what do we do? In a basic sense, psychologists are interested in how we all think, the emotions that we feel and how we interact with the world around us. So within the world of hospitals and health, the psychology role is about supporting the emotional experience of having to manage hospital appointments, hospital stays or health diagnosis on a longer term basis, which you can imagine is a lot for any family.

As we work as part of paediatric teams, the families we meet have all attended the hospital as a young person in their family has experience of a health related issue. Our goal, therefore, is to support every family's natural resilience and their ability to cope at times when a child or a young person's health has introduced extra challenges for them.

And we do this simply by listening to their experience and the concerns of families and supporting them in finding a way forward. We also work with the wider healthcare staff who support families and we think with them about the psychological experience of families attending their services. For us, these teams are the doctors, the nurses and the dieticians who care for young people living with diabetes or epilepsy and for their families.

How do we as psychologists meet families? So there are a number of ways that we meet families, Saskia, and this depends on the health related issue or condition that families are living with. Our service currently offers support to families of young people living with complex physical healthcare needs, with diabetes or epilepsy, and to families with a baby on the neonatal unit in Antrim Hospital.

So each aspect of our service works very differently. For young people living with complex physical health care needs, our psychologist, Ruth Davis, usually meets with families for the first time through a member of the wider team who are already known to the family. So for example, that might be their paediatrician, or their community nurse, or from hospice staff.

And families would typically meet Ruth initially if a referral has been made for support on their behalf. And I should stress at this point that referrals are always made with the consent of the family, so this is never something that is an obligation, I guess. For families with an infant on the neonatal unit, our psychologist Aiveen Higgins may meet with them in a few ways.

So Aiveen is available while they're on the unit, and she may introduce herself informally to the family, and families can then decide themselves if they want further support. Alternatively, families can ask a staff member to speak with Aiveen, so if they have read maybe the service leaflets on the ward and they find it of interest, they can talk to a staff member and they can, they can read up a little bit more about what the service offers.

Or sometimes staff may recognize that there are particularly difficult circumstances for a family and they might suggest a referral. As I mentioned earlier, this would always be with the consent of the family themselves. There will be further podcast content on other episodes of our series, which will tell families a little bit more about the service.

So what we've been talking about so far is that you and I both work in the psychology service that supports young people living with diabetes or epilepsy and their families. So for the rest of the podcast, we're going to focus on these conditions. I think Maeve it might be helpful to describe the ways and the environments we work in and the different ways we speak with families.

How does that sound? That sounds great. So, I think it's always important to ask you to think about that question because meeting with a psychologist might be a very new thing for a young person in their family and it might be something that they may feel a little bit daunted by. There could be some ideas about what psychology is and what we do.

So, it's good to always be able to get a chance to talk a little bit about what that role is in the teams. From the time of diagnosis, there are times when we might meet with families as they are part of something wider with their team. So, for example, for families with a young person recently diagnosed with diabetes, we will most likely meet them when they attend their choice program, and this is run by one of the paediatric diabetes specialist nurses and with a dietician.

This typically happens around three months post diagnosis of diabetes, so it's a lovely opportunity to get to say hello to families and to let them hear a little bit more about what we offer in psychology. We also might meet them again then as they attend any organized events with the diabetes team.

For families with a young person recently diagnosed with epilepsy, we might have been there at the time of their diagnosis, so when they attended the paediatric epilepsy clinic and when that diagnosis was confirmed. Or we may meet them as they attend for review appointments in the time following this.

So it's always nice to be able to get a chat and to have them see our faces and know us as part of their wider team. Like for families living with diabetes, we might also get the chance to meet them at other planned events that are happening, like potentially the parent groups. For families who have had a referral made to our service from a member of their team, we meet with the majority of people in an outpatient format.

So that is, we arrange appointments for them to attend with us, and when they come along we get a chance to chat things through. So at the moment, we offer appointments in Antrim, in Ballymena, and in White Abbey. But also for some families it is easier for them to link with us by either telephone or by video link.

And this might be because of transport issues, or work, or other reasons. And we always try to be flexible with this. We also tend to arrange contact formally ahead of time. to allow our appointments to be expected because this allows a young person or parents or whoever the family member is to set aside the time to create a space that maybe feels a little bit private and comfortable for them so that we can really talk about some of the things that they want to discuss.

So those are the main ways that we get to meet everyone. Thank you for explaining. I think that'll be really helpful for the listeners. I think one of the first things I started to ask myself when working in the service was why might it be helpful for a young person or a family to speak with our psychology team.

And the thing is, there's lots of reasons. I just want to cover some of these briefly now. So one of the reasons you might be wanting to come speak to our psychology team is through adjusting to a new diagnosis and developing coping strategies. For example, if you've been recently diagnosed with diabetes or epilepsy, it not only affects your physical health, But it affects all other aspects of your life, such as in school, friends, your peers, with your family.

Another reason is that you might want the chance to talk through what has happened to you. And you might want to do this with someone independent and in a confidential way. This is not something we tend to have available to us in our relationships with friends or families. And sometimes it's nice to have these different types of important conversations.

So another reason you might want to speak to a psychologist is to help you manage the physical and emotional feelings related to medical procedures. When you're first diagnosed, say, with diabetes, it is often daunting for people to be faced with, for example, taking insulin and taking injections. And it is completely understandable you might have some feelings such as feeling worried or scared or a bit apprehensive.

And some of those feelings and thoughts that you might experience with taking this new medical procedure might be helpful for you to speak to a psychologist about. Another reason you may come to us is to help you cope with dealing with the future. There can often be worries and concerns with the uncertainty ahead of you.

So for example, you might be recently diagnosed with epilepsy and you might have worries or fears of the future. if you're going to have another seizure in the near future. Another reason you may come to see us, and it's very common for this to happen, is that relationships may be affected. So, for example, you might want to talk to us about how does a diagnosis of, say, diabetes or epilepsy, What does it do to you and your family system around you?

So, for example, as I already mentioned, it not only affects you, the young person living with the condition, but it also affects you and your family and your friends. And it's important to recognise that, and Another reason you might come and speak to us in psychology is to help managing and caring for your child whilst also considering the needs of brothers and sisters.

As I've mentioned, you know, having a health condition doesn't just affect the young child themselves but it is important to recognise the impact on parents, brothers and sisters and that's something we really value and recognise in our clinics. Another thing that's really important to talk about the young person and their families to try juggle normal tasks of parenting alongside the challenges of a health condition.

Saskia and thinking about the podcast and thinking about information that might young people and families who would like to come to our service, one of the things that we thought about was what might it be like to come to an appointment with us and what do we do and what might a family expect. It has often been the case where we have a young person attend the session.

And maybe look a wee bit terrified or a bit frozen, a bit nervous. And that's possibly to do with the mystery that sometimes can be around. What do psychologists do? Or even when you look at social media or you look at, you know, what is it that the young people are seeing and what are their view of psychology from that?

So I suppose it's a good opportunity for us to take a little bit of that mystery out and to let them what we do. So the first thing to say is that what we really do in an appointment is to talk

and a lot of the appointments that the young people may be used to going to, we're not doing things like checking their weights or their heights or their blood pressure. Certainly not doing things like taking their blood. So there's nothing physically, hopefully, uncomfortable about coming to see us. We just do a lot of talking and a lot of listening to the family experience.

And we typically arrange for an hour or so and then in the first instance to have a chance to talk to families properly. So and time to settle into the session. We also want to let you know about what we do and we want to answer your questions. So for example, to let you know what our role is within the diabetes or the epilepsy team and how it is that we, you know, speak with the team members.

But also really important to let you know that our service offers a confidential space, and that's one of the most important things. So for families that come to talk to us about how they are doing, we do not go back to the teams that they work with or the teams that they see and tell them the detail of this session.

We don't talk to our colleagues about it. We do not treat someone's information casually at all. In fact, what we offer is a very confidential space to talk about worries and concerns or just their feelings about things. And we do explain to people at the first session as well about how that confidentiality works and certainly it's important that a young person and the parents would know that if we have concerns at all about a young person's safety, that's the point where we cannot hold things confidential and we would need to speak with them more about that.

But we explain all of that in the first session. I suppose our main aim in that first appointment is to hear all about the families. So what is happening in their world and that includes things that are much wider than the health condition. So we want to hear about a young person's hobbies and their friends and their pets.

We love to hear about pets and we love to hear about how they're getting on in school, what they do to wind down, what TV shows they like, what music they're into. So this is a chance for us to really get a sense of the young person as a person rather than just about their health condition. But we do want to hear about the experiences that families have had in relation to health difficulties or their diagnosis.

And I guess that's important for us to hear about so that we can try to help to understand, you know, what difficulties are they coming with now and what is the best way for us to go forward in supporting them. The other thing that we want to think about, and I suppose this the main goals, is to think about does the family want to be with us?

You know, sometimes referrals can be made because maybe someone within the team has a concern about how a family's doing or feels that a young person's struggling, but maybe for that family, they don't feel that this is the right time, or maybe they see things a little bit differently. So we want to speak with them on that occasion about, you know, do you want some support and would you like to come along?

And I suppose it's important to say that there is choice when it comes to our appointments. There are so many other appointments in families lives that they don't have choice over, so we like to, we like to talk about the choice that there is in coming to see us. And if they do want to come along, what might that support look like?

So, you know, do they want to have further sessions after the first one? If they do, would they like those to be in person, or would it be easier for them, for us to do that by telephone or by video link? We can discuss the frequency of sessions. And we think about the goals for our sessions, so we can speak with them a little bit about what change would look like for them if things were, was better in six months.

What would that look like? What would they like to be aiming towards? And we can also then think with them about maybe some goals that we might see to feel as if they think they might be relevant. So it's really about co creation. And co creating goals and co creating confidence for a family in managing independently with their diabetes or epilepsy in their lives.

But our contact tends to be time limited and dependent on presenting need, so those are discussions that we have with the families at the time. We do operate what we call, I suppose, a revolving door type way of working, where a family might come along to see us for a period of time. Then we might end our contact for a brief period, they may go on ahead with their lives, and if things come up again they can come back to us at any time in the future, so we do see people pop in and out of our service as a young person grows up, but just always to remember that it is their choice as to whether they wish to attend.

I think what you've summarized really helps me maybe talk about the next part of the podcast, and I think this is one of the most important things for families out there to know. So the important question is, how will you know if psychology might be helpful for you as a young person or for your family, or both?

I suppose it's important to talk about that this can be tricky. It can be tricky for families to realise or recognise when in the moment. In general, support through our psychology service may be useful to consider if any family member is struggling with their experience of living with a young person's health condition, such as diabetes or epilepsy.

And it's important to talk about that this might look different for different people. And as Maeve's already talked about, you know, some family members might have worries for example, about procedural distress, or they might have worries about taking medication, whereas another family, that might not be a concern for them.

So it's really important in our psychology sessions to really co create these goals. It's also important to remember that it is very natural and very understandable for things to be up in the air and for emotions to be all over the place in the time following a health related experience. This is normal, whether that is post diagnosis or an experience that changes something for a young person's care, like a change in medication or treatment, or if the young person has a difficult experience in relation to their health.

And as the young person maybe grows up, for example whenever they are a teenager, these concerns or these different changes whatever's going on for them at that time might be different to whenever they were diagnosed earlier as a child. We refer to this as an adjustment phase, and this is essentially the time when families and young people are trying to get their head around these things.

What we hope for, for the young person and their families, is that with this time, this emotionally will settle and as things go along, hopefully family members will start to feel a bit more like themselves. We will then have a podcast later on that talks about adjustment and transitions in more detail, but I wanted to briefly mention it now.

And I think adjustment and transition is absolutely a really important part of the work we do in supporting families. However, sometimes these struggles might persist for a wee bit longer. So maybe parents are observing changes in their child or the young person. Maybe they're seeing them become a bit more withdrawn, or maybe they're losing interest in activities they used to enjoy, or showing reluctance to participate socially, whereas beforehand they might have been a very outgoing young person.

Or maybe a young person is expressing their emotions more physically through behaviour changes. Maybe school are noticing things too. Maybe they are presenting as more anxious than usual, clingy to parents or to safe people, not wanting to go to school or not feeling confident enough to go out with friends.

Or maybe the issue is more specific, like they have a procedure, like a blood test or an MRI that they're frightened of. Or maybe there is a part of their medical care that they are struggling with. So, for example, taking their medication or managing injections. Essentially, what we're talking about here is a change in the norm for a child's personality or behavior that a parent or carer, or maybe a young person themselves, might be concerned about.

The other thing to say is that maybe parents or carers themselves are struggling in relation to a young person's health. Maybe they feel anxious about the responsibility that they now hold. Anxiety can create all sorts of difficulties, from sleeplessness, to poor concentration, to irritability, all of which can impact on relationships or on work.

Or maybe a young person is reaching a developmental transition that heightens a parent's anxiety. For example, the independence that comes with teenage years. Are, there are many, many more. But essentially to hold in mind if there are changes from the norm that are of concern for family, then that's what we're here to discuss and to consider how a family may best be supported.

And I suppose from what you've just talked about there, it leads us to the last part of the podcast. So after talking about what it might be like to come to an appointment or whether or not you're considering, if it's helpful, I suppose the next part of the podcast and for today is talk about how can you as a family access psychology services.

So firstly, what we would say is talk to a member of the young person's health care team, whether that is the diabetes epilepsy teams or the staff in the neonatal unit in Antrim or the health team supporting young people with complex physical health care needs. Or if you see a psychologist in a different setting, for example, as part of a young person's epilepsy clinic, or in the case of the neonatal unit in Antrim, if you see Aiveen on the unit, you're welcome to talk to us directly.

From there, we can then figure out what the best support systems are that may help you as an individual or your families. Or, if not, we can sample you and your family to other services if the presenting difficulty is not specifically related to a young person's health condition, that is, diabetes or epilepsy, for example.

So that's it. Thanks so much for listening. Hopefully, this really helps you maybe understand and really figure out the mystery of what is behind psychology and what we do. Thank you so much, Saskia. In this episode, we have discussed how psychology fits into paediatric teams and about what you might expect if you decide to come to see us.

Thank you for listening. Thanks so much for listening. On our next episode, we will be discussing what you might expect in the time following a diagnosis. This is the time that we call the adjustment period. 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 feedback on 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.