Children’s Understanding of Cystic Fibrosis

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Some of the frequent questions asked by parents are: ‘What does my child understand about their diagnosis?’ . . . ‘What can she understand at this age?’ . . . ‘How do I tell her without causing her to worry?’

In this chapter, we explain the child’s developing understanding of bodies, illness and medical treatment and give some examples of ways of talking to children about illness. There are no set ages at which children acquire understanding or knowledge, because it does depend so much on the individual child and their experience, but we do use age ranges to give an approximate guide for different levels of understanding.

Case Study – Kyle (6 years old)

Kyle has been admitted to hospital due to a serious chest infection and suspected pneumonia. He needs to have antibiotics directly through a vein (intravenously). This means he requires a catheter (long thin tube) inserted into his arm and the end of it is visible at the top of his arm.

Kyle has responded very well, and the medical team is very pleased with his progress. However, Kyle has been very withdrawn, unsettled and is crying a lot which his dad says is very unusual as he is normally a confident and lively boy. The nurse caring for him spent some time speaking to Kyle and, after getting to know him a bit, she asked about what he understood about being in hospital. Kyle knew he had a bad cough and was poorly but what he didn’t understand was what was wrong with his arm and if he would ever be able to use it again.

Once the nurse explained to Kyle why he had a tube in his arm, even though his arm was fine, he started to relax and return to his old self.

Sometimes we forget that young children don’t have the same ability to understand illness and medical treatment as we do as adults. Kyle was a bright six-year-old boy who understood and accepted that he needed medicine to help his chest get better. Kyle knew where his chest was but what he couldn’t understand, and everyone had forgotten to explain, was what his arm had to do with it.

Children’s Developing Understanding of Illness

Children can acquire quite sophisticated understanding even at quite a young age if they have had a lot of information about, or direct experience of, something. Children who have a lot of experience of illness, treatment, doctors, health professional, clinics, tests and hospitals will also potentially have expert knowledge of these things that seems to be beyond what would be expected for their age. However, there are a few general guidelines about children’s level of understanding that can help guide how illness and treatment can be explained.

Young children

From about three to seven years of age, children understand their world from direct experience, copying and repeating. We say this is a ‘concrete’ understanding. This means children are very accepting of the things they see and are told, so if you tell them a ball is called a ball, then that is accepted. In young children, this is the word they will use initially only for that specific ball, but very quickly they will start to use that word for anything that looks like that ball.

As we get older, we develop the ability to think and consider information given to us and don’t always take things at face value but, by and large, children under about the age of seven are very trusting. As a parent, you are likely to have a lot of influence over what your child knows and understands.

At this stage, the child understands the body in terms of what it looks like on the outside and understanding about the inside relate to what they put in it (food), what they can feel (bones) and what they can see come out of it (wee, poo and blood).

They can understand that they have other things inside the body if you tell them, but they won’t have a very good image of what it looks like. For example, in the illustration (Figure 1) drawn by a five-year-old child, there is little idea of exactly what is inside the body. The child has coloured in the arms and legs red to indicate blood because they have seen blood come from inside the body, and lots of lines indicating bones, because these can be felt from the outside. For Kyle, he understood that he has a chest and that he needed medicine for it, but he couldn’t make the association between the medicine seemingly for his arm – for that is where it was put – and it making his chest better. So Kyle thought he had another problem with his arm.

Young children have limited ability to understand the concept of illness (see Figure 2). They can begin to make cause-and-effect associations; for example, if they fall and scrape their knee, it might bleed, they might need a plaster and then it gets better, the blood stops and eventually they see their knee looks like it always did. A young child might associate the knee getting back to normal with the plaster; you might have said to your child, ‘Let’s put a plaster on it to make it better.’ You then might find that your child asks for plasters at lots of other times when you know a plaster won’t help; for example, for a tummy ache or a bruise.

At this stage, children can think illness is caused by magic or as a punishment. A young child might hear their parent say, ‘If you don’t put your coat on, you will catch a cold.’ For a young child who then gets a cold, they may think this is the punishment for not wearing the coat.

Middle childhood

In the seven-to-eleven-year-old age group, not only has the brain been developing to enable better understanding of things, but your child will also have had more life experience, so may have acquired direct knowledge of their own body, illness or treatment, or acquired it from other friends or family, story books or television. While children in this age group typically have more sophisticated understanding than younger children, it is still not the same as adults. Children will now have an ability to understand more of what is inside the body and will have some understanding of how things connect. For example, when we breathe in, air goes into our lungs. They may even understand that we need oxygen to live and how this gets passed into the bloodstream. They will have a simple understanding of digestion, that what they eat comes out again after the body has taken the good things out of the food. But their understanding is still quite concrete; for example, most children at this stage assume that their heart is heart-shaped and, generally speaking, they accept what they are told by you. For example, in Figure 3 the eight-year-old child who drew this picture has an understanding of some of the organs inside the body but not exactly where they are.

Children of this age are also developing an understanding not just of illness, but of being healthy. They can now understand the information they have been given about certain foods making them big and strong, and also that eating certain foods can have a bad outcome; for example, too much sugar can damage your teeth. Although they know and can repeat these statements, they might not quite know exactly what it means, unless they have had direct experience, such as needing a tooth filling.

Children are often told facts about their medical condition but don’t fully understand it yet. For example, children might have been told that medicines help them digest their food, but actually don’t know what ‘digest’ means or how the medicine helps with the digestion. Between the ages of seven and eleven children begin to understand what germs are and that these can make us ill. So, understanding of illness is not so much based on magical thinking but on a real understanding that sometimes illness happens because of germs being transmitted in the air or by touch. Children in this age group may begin to think that all illnesses are caused by contagion, caught from the air or from someone else, and it can be very difficult for children to understand that their body developed an illness by itself.

Explaining treatment to children in this age group still needs to be simple and straightforward as they are still only able to put together cause-and-effect associations: ‘I got ill . . . I took some medicine . . . I got better.’ They are not yet able to understand that they may need to take medicine to prevent them from becoming unwell, as some medical conditions require, or even that they feel well but then need to have treatment that makes them feel unwell (see Figure 4).

Older children and adolescents – 11 years and older

At this stage of development, children are typically getting a much more adult-like comprehension of bodies, illness and treatments. But it will vary greatly over this age range and it is important to bear in mind that full brain development is not complete until the mid-twenties (see Chapter 10 on adolescence). Children at this age can have a more adult-like discussion about illness and treatments; they can be included in some planning and decision-making about their own personal health needs. But note that they may not be ready for independence in managing health, illness or treatment needs. They still need support, particularly for complex decision-making or where there is a high level of uncertainty about the illness or treatment needed.

Children in this age group can understand how illness arises not just from germs but also from injury; they can appreciate changes to body functioning – e.g., acquiring an illness such as diabetes; and they can also have some comprehension of genetic inheritance of some diseases, such as sickle cell. However, there will be great individual variation in their understanding and so it is important that parents and the medical team do not make assumptions about their understanding.

This age group are also capable of more sophisticated understanding of treatments (see Figure 5). They can grasp that some treatments or behaviours are to prevent illness or keep the body healthy. They also understand that a state of mind can have an impact; i.e., emotions can affect the way in which you cope with an illness, manage the treatments, and that it is possible to have mental as well as physical illness.

How Do I Talk to My Child about Their Illness?

The way you talk about your child’s health condition as a family will impact on your child’s approach to the illness. It will also affect any other children in the family, and other members of the extended family, too. Families have different ways of talking about difficult issues, but it is certainly true that trying to protect the rest of the family by keeping things hidden can be very stressful and it may prevent you as parents or other family members, such as siblings, from receiving the support that they need themselves.

A mother of a seven-year-old boy diagnosed with leukaemia initially did not want to talk openly about her child’s condition in order to protect him and the family. However, as she later explained, ‘I had to run round like an idiot trying to snatch these conversations with the doctor without my son knowing . . . I didn’t want him to know what was going on . . . I persuaded them not to talk to him. Having done all that, I carried it all by myself and that was the worst thing I could have done really.’

Before trying to explain the illness to your child and other people, make sure you fully understand what is going on. Then make sure you have had the time and support to begin to ‘get your own head round it’ and therefore begin to accept and understand what will happen to your child, your family and you. You need to get some strength yourself to be able to pass on that strength to your child.

Plan in advance

It is helpful if you can plan who will tell, when to tell, where to tell it and what to say. Deciding who will explain the illness and treatment to your child is very important as you know yourself and you know your child. If you think back to any occasion when you have had to have a serious chat with your child, who was best at it? There can be more than one person present but make sure that this doesn’t make things more difficult to manage. Your own mum might be well meaning but is she going to interrupt and interfere? Or would you prefer it if one of the medical team did this?

When

Timing is important because if your child is old enough to know that something unusual is going on, then they are old enough to put some pieces together themselves. You need to get the balance right between getting yourself equipped with the right information and ensuring your child hasn’t already become overly anxious because they have used their imagination to fill in the blanks. It is important to remember that the facts you give them could be far less worrying than the stories they have imagined in their heads. Usually, talking to your child is part of a process rather than a one-off event, so it can be helpful to let your child know that there will be a chance to come back to you with questions or worries they have thought about later on.

Where

The location is really important. For younger children, it should be a calm place, comfortable and, if possible, familiar with no distractions. A busy place with lots going on will mean they are easily distracted and find it harder to take in the information. For older children, you need to be aware that ‘having a discussion’ could cause tension and anxiety in itself. Sometimes it is best to raise difficult issues or give information during a shared activity, so you don’t have to be face to face, for example, while sharing a task such as preparing some food or making the bed. This won’t work for everyone, but for some the information is better given and received if it isn’t made into a big deal (even if the content is a big deal).

What

It is sometimes best to get help with your script from the medical team. You can put it into your own words, but many parents feel more reassured if an expert has given them the words to say or helped them to think through what they might say. There is not one ‘perfect’ way of giving information, but you may feel more confident if you have had the chance to think through some of the options or wording you may use. It can also be helpful to start by checking your child’s level of understanding and what they already know. Whatever you say and whatever the age of your child, information should be clear, concise and may need to be repeated. You don’t have to say everything in one go: just give the amount of information needed at that time. It is helpful to think about just giving them enough information that they need to know at that time as you will have the opportunity to develop their understanding over time. For young children, avoid abstract or hypothetical ideas – use clear facts.

Sometimes it may seem easier to make it sound as though things might not happen in order not to frighten your child, but be careful if this is giving false information. You might be tempted to say something like, ‘The doctors aren’t completely sure, it might not be the case, but anyway you have to go into hospital, but don’t worry about it.’ This will have one sure-fire effect: to make your child worry! Also, you want your child to be able to trust that you will talk to them honestly, so if they find out you have been concealing something from them, this will make it much harder to believe what you say the next time.

It is always a good idea to check what your child has taken in. Asking your child to repeat back what you have said can be helpful; for example, ‘So . . . what do you make of that – does it make sense to you? What is it I have just told you?’

Case Study – Yemi (12 years old)

Yemi is twelve years old and she has just been diagnosed with diabetes. Although she has felt unwell over recent weeks and is aware that she has had tests, she hasn’t yet been told the diagnosis. Yemi’s mum thinks it would be best if she tells Yemi rather than the doctor doing it. Yemi is a shy girl and the doctor is a man, which Yemi’s mum thinks will make things worse, not better. Yemi’s mum has spoken to the diabetes nurse specialist and has got all the information about the condition and also about how treatment will start and what will happen next for Yemi:

Mum:    Yemi, I have spoken to the doctor and he has got the test results. We know why you have been unwell.

Yemi:    I’m busy, tell me later.

Mum:    No, Yemi, this is important, you need to know, come and sit in here with me for a while.

Yemi:    Oh my gosh, is it really bad, am I going to die?

Mum:    No, come in here next to me, sit down and let me speak.

Yemi:    OK, Mum, I’m listening.

Mum:    You have what is called ‘diabetes’. Have you ever heard of that?

Yemi:    Yes, I think so. A girl in my year has it . . . I don’t know her though.

Mum:    It is quite common; there might be lots of kids at your school who have it.

Yemi:    What is going to happen to me?

Mum:    You are going to be OK . . . I have spoken to Sarah the nurse who knows all about diabetes and she is going to help both of us with starting your treatment.

Yemi:    Treatment? What is that? I don’t want treatment.

Mum:    Medicine . . . you have to take medicine every day to keep you well.

Yemi:    Every day for ever?

Mum:    Part of your body that helps you manage your sugar levels isn’t working so well. So the medicine you take does that job for you. You take your medicine and your body does the rest.

Yemi:    What sort of medicine?

Mum:    Well, the best way of getting this medicine is with an injection, but I know all about it, it isn’t difficult and everyone gets used to doing it themselves after a while.

Yemi:    Mum, I’m scared; I don’t think I can do it.

Mum:    Of course you can, come and give me a cuddle. Whatever it takes I will be there, we will get on with this together. The most important thing is that you will be well, and fit and healthy.

Yemi:    What happens next?

Mum:    We are going to see Sarah tomorrow. Do you remember what it is you have got?

Yemi:    Diabetes, and I hate it.

Mum:    I know it is hard [gives her a hug] but we will do this together. Have you got any questions? I might not know the answers but we can write them down together and ask Sarah tomorrow.

In this example, Mum chose to do the telling herself and she found out as much as Yemi needed to know for now. She made sure she had Yemi’s attention; she heard Yemi tell her she was upset and scared, but she was reassuring and got Yemi back on track. She gave Yemi physical contact, a hug, and verbal reassurance that they were in safe hands with Sarah and they would face it all together. She ended the discussion with something practical by writing down Yemi’s questions. If you choose to write down questions, you may need to limit the number, just in case the questions start to raise anxiety. Just simply say, ‘That will be enough for now . . . we can ask the others another time.’

Why me?

Many children, particularly older children, will say variations of: ‘Why did this have to happen to me? It’s not fair, I’ve got nothing to look forward to.’ It is heart-breaking for parents to see their child in distress and they often feel helpless that they can’t take the illness away. You have probably already had those thoughts yourself though, and know that you have to get through it for the sake of your child. You can’t answer their ‘Why me?’ question but you can allow them to express their emotions and show you are supportive and willing to listen.

The next phase is to help your child adapt to living with their medical condition. This isn’t a one-off event; it is a process that changes over time. They will need your help to:

•    Deal with pain and symptoms

•    Deal with hospital, clinics, tests and staff

•    Maintain an emotional balance

•    Preserve a positive self-image

•    Preserve their relationship with family and friends

•    Possibly prepare for an uncertain future

Younger children are likely to need your presence to give reassurance and security, and they are likely to need your physical contact. They will also need you to interpret what is going on because they will find it difficult to take on information directly. In middle childhood, children will watch and hear what is going on and may well pick up on verbal and non-verbal cues. They still need you to be with them, noticing how they are reacting, and taking care of them. They need you to be calm, patient and keep your own anxieties under control as far as possible. It is also common for children and young people to ‘regress’ or act and behave like a younger child when they are feeling under pressure, so you may find that you do have to adapt your approach to help them take on information.

Older children also need their parents as an ally, and although they may understand more about the condition and the treatment, they will need the opportunity to discuss the impact on them and their lifestyle. They may also try and protect you from their own worries and may therefore find it harder to be open with you about what concerns them. While they may not respond well to the suggestion of ‘sitting down to talk through your worries’, you will probably find that there are opportunities that come up every so often, sometimes when you are busy doing something together, when they feel more comfortable about talking about their concerns. Try and make the most of these times because it can be hard to create these opportunities at the time that suits you best.

Having Someone to Talk To

It is really important that you as the parent have someone to talk to about all this. It doesn’t necessarily need to be someone from the medical team or a professional – it can be your partner or a friend, your own parent, your child’s teacher, someone who you feel is listening and taking your feelings seriously. You need support to help your child adapt, so both of you can be positive about the future and tackle any difficulties that do come along. This should help you:

•    Adapt to changes in your lives as a result of the illness.

•    Be your child’s buffer – you are their comforting shield–you can interpret the doctor’s instructions, you can listen to your child’s worries and can help them find the support they need.

•    Develop and know your own coping strategies and make use of them when you need to. For example, if you cope best when you know what to expect from the appointment, you can agree with a nurse that you will always phone in advance to find out what is planned.

•    Improve both your and your child’s ability to communicate; practise asking questions of your child after their appointments: ‘How did that go?’ or ‘Did you understand what the doctor said?’

•    Help your child to get the skills to manage their own health condition.

•    Maintain your child’s good self-esteem and feeling that they are respected by praising them for their involvement; e.g., asking questions in the appointment, listening to their views and taking them into account so they feel they are included in managing their health condition.

There is more information about ways of caring for yourself and your relationships in the final chapter.

Talking about Life-limiting Conditions and Death

Fortunately for children with a long-term health condition, it is still rare for the condition to cause death during childhood, even if it is life-limiting. One of the hardest things to talk about with your child is the subject of death or dying, but if your child does have a life-limiting condition then this may be a topic that you will need to talk about at some point. You may have some opportunity to discuss death at a time when it is not related to their own illness. Just as we discussed earlier in relation to understanding illness in general, a child’s understanding of death and dying will depend on their experience, as well as their stage of development. Many children will have had experience of something or someone dying – for example, a pet or a grandparent – which will inform their understanding of death. However, we know that it is hard for children to take in all the different implications of death. For example, they may understand from seeing a pet die that it means their pet is not here any more, but they may find it hard to take in the finality of death and they may question where their pet has gone to. If you use these opportunities that are not related to their own illness to talk to your child about some of the issues raised by death, this will help to shape their understanding.

One of the reasons it is very hard for a parent to talk to their child about this topic is because of the level of distress that they feel themselves, and their own difficulty in thinking or talking about this possibility. It is therefore essential for you as a parent to draw on support for yourself, in order to be able to manage any conversations with your child. There are additional resources that you can find to help with this and some of these are listed in the Resources section at the end of the book.

Over recent years, children’s palliative care services, including hospices, have expanded their services to offer a range of support strategies for all the family, but many parents still find that the thought of using these services is too upsetting and they do not want to ‘give up’ on active treatment for their child. Many fear that discussing or planning for the possibility of death is a form of ‘giving up hope’ that could result in their child or themselves giving up. However, these services have a lot of experience of managing life-limiting conditions and death in childhood and expertise in talking about options, so it is worth considering using them as it can be very reassuring to get support from professionals who have a lot of experience of this type of work. These services will usually offer the option for parents to visit without their child first, to discuss what is offered and to have a look round.

It may also be hard for you to know what to tell your child about what happens after death – and this will depend on your own beliefs. If you have a very strong faith of your own, you may be able to answer your child’s questions based on your own beliefs. But many parents find that being in this situation is so difficult to manage it can challenge their pre-existing beliefs about life after death. Nonetheless, it can be very positive to talk to your own religious leader, as they will be familiar with the questions raised and can be a great support.

If you do not have a strong faith yourself, it is still worth talking through your own beliefs with someone, as it will then be easier to answer any questions your child may ask you about what happens after death. The same principle applies that it will be easier to talk to your child if you have also had a chance to prepare yourself beforehand, and even if you are not able to fully answer all their questions, you will feel more prepared.

Nowadays, if you wish, it is possible to include children in talking about possible death and help them to be involved, as well as their parents, in any choices about where they die; for example, at home or in a hospice or hospital. However, any of these discussions would initially be with you as a parent, so you would have the opportunity to get support for yourself first, as well as think about the extent to which your child can or should be involved in these discussions. Families have different views about these important issues, so it is essential that this is done in a collaborative and supportive way.

Developing Resilience in Your Child and in the Family

Developing resilience is a method of identifying ways of building up your child’s skills in a proactive way in order to help them develop a positive outlook towards some of the challenges they may face as a result of their condition. We know that some children and families can develop a very positive sense of self and they are admired and respected by the professionals who work with them. While this approach can actually benefit all children, it is particularly helpful for children growing up with a long-term illness and a way of helping you to feel you have some positive strategies to handle any issues or difficulties that come up.

Over the last couple of decades, legislation has been passed that any form of discrimination is illegal. Policies are now focused on promoting inclusion, not exclusion. Psychologists working with children with physical health conditions have been very aware of discrimination, exclusion and difference as themes and the impact these have had on developing children’s sense of self and confidence. (See Chapter 7 on managing difference for more details on how to deal with other people’s reactions and building your child’s self-esteem.)

Nowadays, it is potentially easier to enable any child with a physical health condition to grow up with a healthy self-image without perceiving themselves as unnecessarily limited by their health condition. We want to help children discover their potential and encourage resilience so that they set themselves goals and ambitions in the same way as their peers, despite their health needs.

You can encourage and build resilience by ensuring that you think about the words you use to describe your child’s health condition; avoid negative-sounding phrases such as ‘you have something wrong with you’ or ‘disease’. Try not to refer to treatments as being for ‘illness’, but more to keep your child fit and well. As a family, include your child in all the activities you would do anyway: just make adaptations. If your child’s health condition means that they require a particular daily treatment – for example, physiotherapy – make it as fun as possible, and consider if anyone else can join in the exercises. Conversations about future achievements should be positive; focus on what can be done rather than limitations. Build confidence and feelings of competence in your child by:

•    Praising their strengths

•    Avoiding comparisons with siblings or other children

•    Recognising and taking up opportunities to build on their strengths

•    As a family, engaging in activities together, doing something that everyone can join in

•    Including them in family chores with tasks they can achieve, as you would your other children

•    Encouraging them to take an active part in decision-making

•    Planning to adapt – accepting challenges and finding ways round them rather than ruling things out

Key Points

•    Children’s understanding of illness will gradually develop over time, and is influenced by both their developmental stage and their experience.

•    Children will be influenced by the way you talk about their condition so it is important for you to have the time and support to understand their condition and treatment, and to be able to talk openly with your child and give as much information as they need to know.

•    Under stress of illness or treatments, children can regress to earlier stages of thinking and coping. So even your teenagers may need you to speak on their behalf.

•    Older children also need reassurance, particularly if the treatment is long term or uncertain, but may be more reluctant to discuss their feelings openly.

•     Take any opportunity to discuss their condition and their fears when they feel ready to do so.

•    Take a proactive approach and develop a sense of resilience in your child as well as the family as a whole.

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