The Long Term Effects of Chronic Illness on the Sick Child and the Family

Report of Presentation given by Ms Sarah Meekin, Senior Clinical Psychologist, Royal Belfast Hospital for Sick Children

Thank you very much, it's very nice to be here. I am here with my theory and experiences of working with parents like yourselves.

I'll just give you a bit of background as to what I do. I'm the senior clinical psychologist in a department of about five or six psychologists. The Royal Children's Hospital is the main paediatric hospital in Northern Ireland. My interests are very much in the area of chronic illness. I work in the paediatric cardiology unit and also in the renal team. I also have an interest in paediatric intensive care work.

What I hope to do today is to look at the effects of having a chronic illness or a cardiac condition.

I will talk a lot about the term chronic illness because a lot of the literature really deals with it as a whole, rather than looking at specific conditions.

I want to look at the normal expectations that we should have of our children. I think it's very important not to lose sight of this because often when a child is born with something wrong, everything that happens from then on becomes attributed to the illness, such as a cardiac problem. You can lose sight of the fact that at the end of the day this is also a child who is going through the normal developmental processes, and some of the things which they go through are normal and aren't a maladjustment or a problem.

I'd like to focus on what's normal and how the illness can impact on that, where we should be focusing our intervention, and also to look at the risk factors that are associated with maladjustment in children and families who have been through an experience of chronic illness.

I suppose this ties in with what Ruth (Henry) was saying – I have an 18 month–old baby of my own and I am aware of the way that it's supposed to be. Oddly enough, in my case it was exactly the opposite. Working in a paediatric hospital, I expected something to be wrong with him. I have to say that the fact he was born healthy was a big shock to me! I was almost more depressed waiting. So there's just no good way to do it.

I think we have learned a lot in the last ten years of how difficult it is for parents and families and for the children themselves. Attempts have been made to make people's lives easier. For the most part, however, people have very negative and difficult experiences of hospitals, professionals and how they and their children have been treated. Hopefully, people like myself are trying to change the ethos, to change the idea of over–protective mothers or parents. We're trying to make it be seen not that this is an abnormal child, but that these are normal children and normal families dealing with very difficult and abnormal situations.

Very much research in the past has focussed on the negative effects of disease, and we've lost sight of the fact that most families and children and families are very resilient, and cope and manage. Here you all are, a living testimony with the crÞche going on and the kids behaving in their normal, disruptive, horrendous fashion. I think it's very important to send out that message. You know that you can cope and adjust and manage, but perhaps it is people like myself who need to be educated.

There is now more of an emphasis on looking at what adjustment is, and how parents and children get to that stage. "What are the kinds of skills that people have that make people copers?", rather than "What are the problems that people face that lead to maladjustment?", because that is the minority group and we have a better understanding of that.

There's no general definition of what adjustment or chronic illness is. Or what coping with a chronic illness means. It's very much seen within two areas: one, the way in which the child functions within everyday life, and two, the behaviour of the child in association with their experience of the illness. One definition can be that it's a process of managing demands. Internal demands, which the child and the family have, and also external demands, which come from professionals and other family members. These demands have to be appraised as being taxing or difficult and exceeding (or being perceived to exceed) the resources of that person. I think that a lot of the stress and the difficulty that comes up is because of people's perceptions of what's happening –– they see themselves as not being able to cope. Whereas perhaps someone who, like yourself Ruth, has been told ahead of time has to prepare. Most of us, if we were told ahead of time that this was going to happen, would immediately feel we're not going to be able to cope with this and we're not going to be able to manage it. Yet when you're in the situation, you do because you have to. It's a case where choices are somewhat limited – you can't send them back and ask for another one!

I think that the most important area when dealing with children, regardless of whether they have an illness or not, is looking at the whole area of their development and taking a developmental perspective on the child. We can look at coping and adjustment in those terms. We can look at good adjustment as being behaviour that is age appropriate, that it's normal, and vaguely healthy, and that it follows a path towards positive adult functioning. Maladjustment we can look at as behaviour that is inappropriate for the age of a child. Especially if we feel that it's qualitatively pathological in nature. Adjustment and coping is not something that happens, it's something that becomes. It's a dynamic process and it's ongoing. It's not about getting a child through the first year, it's not about surviving those first few months, it is continuous. Our children are always our children, whether they're two or twenty–two, and the process of coping and adjusting to their illness is an ongoing issue (especially in something like congenital heart disease where it doesn't go away for most of the time).

I had a family in recently where the daughter was pregnant, and she had congenital heart disease. For the mother, the grandmother of the unborn child, that was her daughter. It was like her daughter was still a baby going through pregnancy. The worry and the concerns don't go away as the child gets older. In fact, it's more difficult as time goes by because they're not under your control any more... if they ever were to start with!

The same developmental tasks and challenges that any normal child has to go through have to be experienced by a child with a chronic illness. It may be that the ability to cope with these tasks is different or it may be that they need or have different skills with which to do so.

Children very much need to interact with and experience their environment in order to develop and grow and understand it. If you have a chronic illness, it is going to impact on your environment a good deal. One, because you may be in a special care baby unit and that's not the same as being out in the cot tumbling around feeling your mobiles. So the environment which the child grows up in is very different.

Their environment as far as the people in their life is also very different. The reactions of people around them are going to be different than if they were a healthy child. And there are many aspects to disease, such as being immobilised, such as difficulties with feeding, medication, which can well impact on a child's development and ability to do things.

I'm going to mention the parental over protection word. Although it's not a word that I'm happy with because I consider myself to be an over–protective mother, but I think that that's my job, and I think that, as parents, that is our job. That's what we're there for, to over protect and make sure that our children are safe. So I think that it's become a word that has been used to protect professionals from parental concerns and it allows us to duck out of what is reality. Hopefully, over time that is changing.

What are the kinds of life tasks that we expect our normal children to do? And where are the problems that a child with a chronic illness is likely to face?

Infancy is very much an exploratory phase. In the first couple of years of life, children develop probably the most they're ever going to. My little boy is 18 months, it's astounding to see the process and what he's learnt in that time. It's all about being able to become attached to more than one person, but to have a central attachment figure. Think of the number of people involved with a child who has a heart condition. They have constant changing shifts of nurses. They have numerous new doctors – every six months, someone new might come in. They usually do have one or two parents who are usually there in a stable way, but they have interaction with a hugely greater number of people than you would normally expect an infant of that age to have. This, of course, is going to have an impact on their attachment, which is going to depend on the personality of the child. Some children adore that, they really enjoy interaction with a large number of people, they're very sociable. Other children find it very difficult to cope with it. I think it's important for us as professionals to begin to look at that and to try and minimise, for children who find it difficult, the amount of people that they have to come into contact with.

There's also the issue of object permanency –– when your child realises that you've hidden the ball but it's still there, when they realise that mummy's just left the room but she is going to come back. Sometimes if you've got an illness where maybe for a number of times mummy has gone away and not come back as quickly because you've gone to theatre or whatever that can interfere with a child's development of the idea of object permanency.

The other things that they do in this first couple of years are very much about handling things. It's about exploring, turning things around, looking at them from different angles. Obviously if you're bed–bound or incubator–bound or very much attached to leads, that can be difficult to do. Sometimes you need to look at other ways of giving them those kinds of skills.

The first two years of life are very much about learning to walk, getting on your feet, learning to move independently. Again, chronic illness, and heart disease particularly, can interfere with that because of the nature of the disease.

The next couple of years are all about self–control. Developing control of toileting skills, language, motor skills, beginning to start to play. Children's perception of the world can be very different from what adults perceive and I think we have to be very aware of that – children are very concrete thinkers, when they see dogs on slippers, they see dogs. When you're dealing with an environment like a hospital, you have to be very aware of that.

So in those first couple of years it is about control, it's about learning to control your impulses, behaviour, coping with failure. As parents, at times it's difficult to allow children to do that, even if they're healthy. It's upsetting to hear them cry – I find it difficult when my 18 month–old starts to have a temper tantrum because I feel sorry for him, I think, "Yeah, life is pretty difficult.", and I can understand that he wants this or that. When your child is ill, if you think of the guilt feelings and how much more that is heightened –– it's difficult to allow them to experience failure, to begin to experience the word "no", for them to experience that they're not allowed to do everything that they want to. I think that this is an area where things can go very wrong for parents and where you can set yourselves up for a lot of problems because you deal with the child in a very different way. I think it is very difficult to get round that in many ways because I think we have to be very realistic about ourselves as parents as well. In that if you have an ill child, you will treat them differently and there is no point in pretending you won't and there is no point in people telling you not to, because it's just not going to happen. But, perhaps if we're aware of some of the pitfalls and dangers then at least we can look out for them and try to look at what the difficulties may be.

It's also a time when children are trying to control their separation anxiety – learning to move away a little bit from their parents. But if they've been in situations of high anxiety, when difficult things have been done to them, a lot of painful procedures, then obviously that kind of control is going to be delayed. So what you might expect a healthy five year–old to be able to do is maybe not what a chronically ill five year–old is going to be able to experience because of the level of anxiety that they have to cope with. Also, they are learning to control their selfishness, their desire for everything to go their way. This is another area where parents need to understand that this is something which they need to go through to developmentally go on to function as healthy adults. It's also a stage that you feel that you're never going to get out of.

I think that another difficulty of having a child that is ill is allowing yourself to feel fed up with them and allowing yourself to wish that someone could take them away for a while. There's this aspect of being so grateful that they are there, or feeling that that's just not an appropriate emotion to have because of the difficulties that they've experienced. I think that's where it's important to realise that you're a normal parent and they're a normal child. Okay, they are difficult and abnormal situations that you're in, but that doesn't change the fact that parenting is difficult and kids are monsters!

Then the next five or six years after that are more about higher level issues where they start to look at things like gender and being interested in what each other look like in the bath. Where they begin to think about what is right and wrong and begin to be able to argue with you about it as well. They also begin to develop co–operation both in play and in interactions with adults and other children. They learn to be members of teams. I think this is a very important aspect for children who are ill. Most of our membership of teams, as children, is about sports, and this is a very difficult area for kids with chronic illness because they are very much restricted in their physical activities for a lot of the time. So they can lose out on a lot of the developmental tasks they need to do. I think it's important to consider that and to look at other areas where they can join in and look at other sorts of teams and groups of people that they can join that aren't sport oriented but still allow them to develop that kind of relationship. They also begin to think more about themselves, although they become more aware of the feelings of others. They become more introspective as to why they do things and what they're doing and trying to work things out a bit more. It's also the time when they begin to develop their interests academically, artistic–wise and sports–wise. This can very much be influenced by their illness as well, because they may well have lost a lot of time at school and so they're not able to join in with the activities that their peers are doing. It could be a particularly difficult time. I think as professionals we need to be aware of a wider range of options for children and maybe set up things that children can join. I know that there is more of an ethos of having groups of children, who have heart disease for example, to get together themselves forming social relationships with people who are going through the same experiences as themselves.

And then we get adolescence and everything goes out the window. I notice there are some adolescents here so I hope they won't take offence, but it is a difficult time. I think it's important to realise it is a difficult time regardless –– healthy adolescents are difficult, and for an adolescent who has a chronic illness, life is much more difficult than the norm. They're having to get used to a much more mature body. The whole issue of sexual development comes in and they have to deal not only with the normal changes that they're going through, but all the stuff around scars and their body appearance. All that kicks in around this time. It's also very much a peer group time, a time when parents are the lowest of the low and their friends know everything. That is difficult to cope with at the best of times. But if you have an ill child who has healthy friends, that is even more difficult because everything the healthy friends do is right and the naughty over–protective mother is definitely wrong. It can be very difficult to mediate in these circumstances and keep them safe and healthy and yet allow them to do the things that adolescents need to do. It's also a time when they will try out sexual activities and try smoking and drinking. All of this can be very risky behaviour if a child has an illness. It's about trying to let them experiment, yet within a safe environment –– so a lot of compromising that has to go on. There are also issues about relationships and about working environments for children who have a chronic illness. There may be things that are not suitable for them to do. If they haven't considered this before now, maybe they've set their heart on something in particular (being a fighter pilot or whatever) that may just not be the best thing to do if you have a chronic heart condition. These things need to be addressed, and perhaps we need to find out sooner, before they get to this stage, what it is they are really planning on doing so that we can let them down gradually over the years. They also start to set their own limits, decide their own values and their own goals and sometimes they can be very much in competition with what their consultant or their parents want them to do. It's a time when the relationship changes because it's not a time when you can tell them any more what they should do and that what mum says goes, it doesn't work that way any more. It's a time of compromise and trying to find a solution which suits everyone – an impossible task.

So that's about what we expect normally and what some of the pitfalls may well be. What then, in the literature, are the effects on a child of a chronic illness, and what can we expect?

There is no doubt that the literature does continue the point that these children have an increased vulnerability in terms of emotional and behavioural development. Children with chronic disorders seem to have about twice the rate of maladjustment as healthy children. To counter that, because that sounds a bit frightening (and I can see eyes widening), is the fact that the very prevalence of these problems is higher. It's only a small minority of children who have problems, and I think that's the important message to take away – it's not that all children with chronic illness have theses types of problems. There is a minority of children who seem to have a large number of problems. However, there are a number of risk factors which I'll talk about which are implicated in this.

We can conclude that children with chronic disorders constitute a group which is vulnerable to maladjustment, but this is not the common outcome, this is not what we should expect for our children. As we do more research looking both at the risk factors and also the resilience factors, we can, hopefully, work in conjunction with parents and professionals to set up situations where we can reduce the risks and increase the resilience of these children. That way, we're eking out the chances of them developing problems.

What are the types of problems that may well happen?

There are age issues and certain literature would seem to say that in younger children it's about schooling and achievement and that in older children and adolescents it's about social adjustment and that's really no surprise because that's what our lives are about at those stages. Younger children spend most of their lives at school and children with an illness miss out on a lot of that because they're not at school as much. Whereas in older children it's about socialising and developing those skills and so you're going to get more of a disruption in that area if you're going to get disruption at all.

The other types of things that have come up in the literature as problems that children might experience are the areas of anxiety and fear. As parents, when we begin to conceptualise what our own fears are, we just need to transfer them across. Because, as a child gets older and their ability to conceptualise and rationalise develops, they begin to take on our fears, because they begin to understand what the whole process is about, they begin to understand the implications of having a cardiac problem, they begin to understand what the problems may well be – and so there can very much be a fear of dying, a fear of "What's going to happen?", "What does life hold for me?".

The period of adolescence is a time when young people begin to think about the world, why we are here. So if you've got an illness, it could be a threat to either your lifestyle or a threat of death, you're going to get it at this stage. It's important that we allow this to come out, that our own fears don't become a block to allowing our children to explore their fears as well. You can often get depression because of that. There are a lot of self–esteem issues that come up in relation to their ability to do things because they may have missed out on a lot, because they don't feel integrated with their peers, maybe things about scars and body image.

Peer relationships is a big area and it can be an area where there can be a lot of problems because children with an illness haven't had the same exposure to their peers and aren't able to join in the same activities. Therefore, there can be a problem with them finding their level within their peer group.

Behaviour problems are prevalent, they're not a long–term issue, they're an ongoing issue, really from the age of two to 22. I think it manifests in different ways at different stages. Gender is also an issue, you find that boys tend to act out a lot more and be a lot more difficult. Certainly in the younger stages, boys tend to be the problem, whereas girls are quite good as younger children but as they get older, issues of anxiety and depression become more prevalent.

The whole perception of illness is a very important one, and there has been some research that has shown that children with an illness, or people with an illness in childhood perceive themselves as ill people as adults whether they are acutely ill, or not. This can have implications for what they attempt to do, and their lifestyles can be much more restricted than they need to be because of their perception of themselves as not able to do things.

[Referring to diagram]

This is a horrible diagram, but really it's about how we can look at changing this idea that children who are chronically ill are going to have difficulties further along the line. Basically, this is a model that has been put forward by two guys called Wallinger[?] and Farnham[?]. It's seen as a generic model, something that can be applied not only to heart disease but any number of chronic illnesses. Chronic physical disorders are seen as a chronic strain both on the parent and the child. The reasons why families with a chronically sick child are at a greater risk of maladjustment is because they have a higher number of stresses, which comes as no shock to anybody. (Literature is great at putting things down on paper that you already know.) Basically, there are a much higher number of stresses to which any parent or child with an illness is exposed, it's then looking at those stresses and what the mediating factors are for trying to reduce them, what makes it worse. So they have developed this model. It's divided into two parts. One is risk factors, and they are: disease related factors, functional independence factors, and psychosocial stress factors. Then they have what they call resistance factors, which are more personal things, more social–ecological factors, which are more about families, and also about how the child and the family process stress. All of this has an impact on how the child is going to adjust.

I want to go through the risk factors and the resistance factors with you and look at what some of the main areas of concern might be. Some of the main things that might impact on the family and the child.

Stating the obvious, the diagnosis is going to be a big issue, also the duration of the illness.

The amount of physical disability or physical restriction that the child experiences is actually of crucial importance and is one of the main factors in predicting whether a child is going to have difficulties coping. In that, if you've got a chronic illness plus a physical disability, there's a much more increased risk especially of social difficulties, or difficulties with your peers and social relationships.

The visibility of the illness is also important, I think that often children who have a cardiac disease can suffer because it's not obvious, when you're clothed you look normal, it's when you take your clothes off it looks like somebody's taken you to a battlefield. But for all intents and purposes, most of our children look normal, unless there is an associated problem with Downs or something like that. On one level, that's great for them because that allows them to be as normal as possible. But on another other level, it means that they lose a lot of support, or sympathy as such, in that people just don't understand why they have so many problems or why they need classroom assistance, or why this, or why that. It certainly can make the job of parents a lot more difficult because you're fighting against a system that perceives your child to have nothing wrong with them.

The number of hospitalisations that your child has, and the experience of those, is also very important. This is an area that I'm particularly interested in. I think that we are still very bad at dealing with children in hospital, children still have very negative experiences when they don't need to have. It's this that I'm looking at in our hospital – how to make the experience of hospital as positive as possible for the child and for the parents.

Also, the whole issue of procedures and pain and difficult things being done to them. We have a lot of things available these days to reduce pain and reduce difficulty in children, but they're not always used. One reason, I think, is because kids are easy to hold down and you can do things to them without an awful lot of problems. We do things to children that we would not do to adults – because they could sue us, basically. I think that's important to take that onboard, certainly as a professional, and I think it's important that yourselves, as parents, feel empowered to say this is not acceptable, I'm not prepared to let my child go through this, there must be an easier way to do it.

So there are a lot of factors that are associated with disease and its severity. But there are a lot of interesting things that come out as well. In that the severity of the illness is actually not directly related to the degree of maladjustment. In fact, there is quite a lot of evidence coming forward now that children with milder forms of an illness may often be the ones that have more difficulty coping, which I think is shocking at the first, until you begin to look at it a bit more. This has been found in a number of areas like cardiac and arthritis. It's not the kids at the severe end of the scale that have the problems, and sometimes it's not the ones at the mild end, it's the ones that fall in between that seem to have more difficulties. I think this is for a number of reasons. One, it may be that these kids don't know if they're ill or not, they're ill but not really as ill as some people, they fall between knowing who they are and where they are and what they can do and what they can't, so the boundaries aren't as clear. A severely ill child knows what they can't do and often is very good at monitoring itself, and tends to be more aware of the pressures on them. But a child whose cut–off is maybe not quite as obvious can have more difficulties with that. I think it's also about professionals and how they perceive the child, sometimes because we often see the more severe end of the scale, we might expect the child to get on with things since they're not as bad as some. Children pick up this message quite clearly as well, where they're almost brushed off, in the same way as some parents feel brushed off. You know what happens when we are not taken seriously, we up the stakes, we complain more, we feel worse, and we're dying all of a sudden. Children do that as well, if they feel they're not being listened to. You often get a kind of escalation of symptoms – not that they're lying about it, not that they're putting it on, just because of the anxiety aspect of it and the frustration often does exacerbate symptoms –– anxiety can make physical symptoms worse. It's important to take that onboard.

A very important thing that's coming up is that disease by itself and the type of disease is not the most important influence on adjustment. Although aspects of the disease are important.

Another big area is that of functional independence. Basically, that is about disability in terms of the specific daily activities of the child; what they can and cannot do. There is a lot of evidence emerging to suggest that this is a big area that is linked to whether the child is going to cope or adjust well to the illness. If there is a restriction on activities, either socially or physically, a child is much more likely to have difficulties coping later on. Children who have more absences from school or those with a poor functional status are much more likely to have a poor psychological adjustment. As a professional it is important to bear that in mind when placing restrictions on a child, sometimes you're inclined to be overly cautious, also as parents we need to be aware of that. While, at times, we want to prevent them from making themselves ill, they should be allowed to do as much as possible within their own safety parameters. Not to do so is going to have quite a psychological impact on them in the future.

The last risk factor is the area of psychosocial stresses. This fits into the model of stress and coping. Chronic illness is seen as a potential stress to which children and their families are trying all the time to adapt. The kinds of processes that are involved are the area of self–esteem, locus of control of the child and the parent. The kind of coping behaviours that they've developed, and things like maternal adjustment and general parental adjustment are important as well.

Results would show that any time of perceived stress is going to be associated with maladjustment and that's the big message I think. It's not about the stress itself but it's about; one, how the child perceives what's happening, and two, how the family perceives what's happening.

It's not the actual stress that has the impact, it's the perception of the stress. I think that's a hopeful message because we can change the way that we perceive things, it's difficult, but it can be done. We often can't change what is actually happening. I think Ruth said it before, if we can change negative experiences into positive ones, and see positive things coming out of difficult situations, then, with ourselves and our children, we're going to adjust much better.

The kinds of resistance factors on a personal level of the child are the age of the child and the developmental level of the child. Younger children are much more vulnerable. As they get older they become more able to operationalise and rationalise and understand what's happening. That gives them some kind of resistance and resilience. That's why information and knowledge are very important – it's amazing how many adolescents come through our clinic who still don't know what their diagnosis is, who don't understand what their heart condition is. Many parents come through and don't really understand. I think that that's a big issue for professionals working in the field. I think we're no good at explaining things, it's amazing how many I don't understand yet, it's a message for doctors. But it is very difficult to grasp these concepts, and often children can be growing up and we're not aware of them growing because we're living with them every day. We forget that they're becoming young adults and that they need more information themselves. There's no doubt that knowledge is power and it's very important for these children to feel that they have some control over their illness.

The gender of a child is also important. With males often having more difficulty than females –– particularly in the younger age groups. Sorry about that guys.

Intelligence of the child is also quite important. It can be a plus and a minus. Sometimes a child with a higher intelligence can be helpful because they can understand things quicker. But it also means that they can see into the future more clearly as well and be more aware of the problems that come up.

The way they problem solve is going to be related to their whole development and how well we have allowed them to develop their problem solving skills. If we have encouraged them to be active, to be participative, in their environment, to find things out for themselves, then when they come to an age where they have to deal with difficulties they're going to be much more adept and equipped to deal with it.

Obviously the personality of the child and their temperament is very important as well. As is their previous experience. If they've had a lot of difficult experiences with things like hospital and procedures, that is going to have an impact on how they deal with things that come up in the future.

The work that goes on still very much points to the fact that if the family adjusts and copes with the illness, the child will adjust and cope with the illness.

Again, there's been very much a focus on maladjustment and difficulties and very much a focus on the mother as well, which is always quite difficult on us mothers because there's always a lot of negativity associated with mothers and how they react to illness. There's a lot around about the difficulty on marriages – there being a higher divorce rate. There has been research showing that divorce rates in parents with children with an illness is actually not any higher than the norm –– although there may be higher rates of marital strain at times. There's also this focus on the mother and a neglect of the father's role and of the sibling's role as well, which is being addressed in the more recent literature.

The negative factors regarding family adjustment are the more social aspects. Families who live in poor accommodation; who don't have the use of a car; who have financial difficulties –– they're going to have more difficulties in coping with the illness because of the amount of stresses from those other factors put on them. Families where there is higher conflict in the family generally, and where there is less expression of emotion and talking through of things also amount to more difficulties. Families where there is difficulty in making decisions, where things go round and round and there's no feeling of resolution often have a poor prognosis. Often you find that with children who are not adjusted or coping well there's a rigid behaviour in the family –– where it's difficult to move on from the way things always were, even though, for the child and the family, needs have changed.

One of the biggest positive factors for child and family adjustment is a family which is cohesive and there is a sticking together, not the perfect family because that doesn't really exist, but a family where there is a sharing of information. Where there is discussion of the illness and that's particularly important for sibling adjustment. A discussion of things so that they also have knowledge about their sibling's illness is very important.

Also, the mother is an important aspect, and that maternal health is very connected to the child's adjustment as well. Rather than seeing that as a negative thing, we should take it as a view of how very important we are in the lives of our children.

There's more awareness on the part of professionals of the importance of the impact of your child's illness on its siblings. Often, if it's the second or third child down the line, you're having to deal with other children around the place. There are both negatives and positives for these children in having a sibling who is unwell.

Some of the negatives are feeling isolated. In the same way that parents can feel very alone in the midst of all the horror that goes on, siblings can often feel very lonely, very isolated from their peers and from their family. There's a thing of not wanting to upset their parents by discussing things – so often they don't have an outlet. There's also an increased number of behavioural problems. You often find, particularly with younger siblings, them saying, "I want to have a bad heart", because they perceive it as having immense benefits – they see all the attention that this child is getting. This happens particularly when they're younger because they don't see the negative side. This can be very difficult for parents to deal with. There can be a lot of somatic complaints – siblings can often start to present with tummy problems, or headaches, or sore joints in an attempt to draw the attention of the parents to them as well. Often school problems can arise because of the stress that the siblings are under.

On a positive note, it has been shown that siblings of a child with chronic illness are much more compassionate, and tend to be more understanding and sensitive because of their experiences. They're often more pro–social in their behaviour and teachers have reported that they are often more pro–social and often more socially competent as well. Often these children are more resilient because of what they've had to go through. They've, in many ways, dealt with the worst thing that could happen and, in the same way as parents can, gain an increased resilience, and it can change your perspective. The worst possible has happened and you can deal with a lot better, and things can seem a lot more trivial that would have bothered you in the past.

So what is the future? People are different, I don't have an answer that I can hand to you and say, "Do this and your child will be fine". I think each parent knows their child, I think that the parent is the expert – it's not me that's the expert. I may know some of the difficulties that could be ahead and I may know how to deal with some of the problems, but I don't know the child like you know them. So I think it is important that parents begin to see themselves as experts on their child and to feel, therefore, empowered to do what they think is best. Every child is different, they all require different things. Children tell us that, and certainly adolescents can well face this horrifying picture. I think the other thing is that you do what you can, and sometimes parental and professional expectations are ridiculously high. When you're in this situation, you do what you can, you do your best and that's usually good enough. There's a lot of beating up of themselves that parents do and thinking they should be doing better – "I should do this more", or, "If I could do it again, I'd go back and do it like this". At the end of the day, in this situation, you do do the best that you can, and that usually is good enough. It's just yourself that would like it to be better, but most of our children turn out okay.

Thank you very much.