Procedure-related Distress and Anxiety
For many people, the thought of having any form of medical test or even going to a medical centre or hospital immediately brings on anxious feelings. Having to take your child to hospital for tests or treatment can fill you with horror. There are very good reasons why people develop anxiety or fears connected with medical tests and hospitals – it is because the experience has been painful, frightening or embarrassing in the past, and we don’t want to repeat it.
Anxiety can cause any or all of the following:
• Feeling faint
• Butterflies in the stomach
• Racing heart
• Feeling sick
• Finding it hard to breathe
It is normal to experience anxiety when faced with a situation or object that causes fear. The anxiety we experience is a result of changes in our body caused by a chemical called adrenalin and, in some situations, this is a normal and helpful response. Adrenalin enables us to respond to a dangerous situation and is often known as the ‘fight or flight’ hormone. For example, in the past when faced with a physical threat, this enabled our ancestors to escape dangerous situations.
Sometimes we can experience high levels of anxiety even when the situation is not actually very dangerous – this may be because we have either experienced something unpleasant associated with it before, or because we have interpreted the situation as dangerous when it isn’t. This can lead to a phobia – a fear that is not based on a real danger. Many phobias lead to strong feelings of anxiety just by thinking about the feared object; for example, some people feel anxious even when thinking about spiders. Many children will automatically get feelings of anxiety when told they have to go to hospital, even if a test isn’t planned, and they will try to do all they can to avoid having to go – often by throwing a tantrum or becoming extremely upset or distressed or simply refusing to co-operate.
Often, even if the procedure itself is not very painful, the thoughts and feelings created in the build-up to the event can make the thought of it distressing. It is more often than not the memory of the whole event being unpleasant that causes us to become anxious rather than any actual pain from the procedure. This is called ‘anticipatory anxiety’, where we begin to experience anxiety before the event; often, the event itself is not as bad as we had convinced ourselves it was going to be. Quite often, children will try to avoid the procedure because of their anxiety, and well-meaning parents and staff end up getting caught up in endless negotiations and discussions of what might help, during which time the child will be growing more anxious.
As a responsible parent, you have to take your child to appointments and ensure they have their tests done in order to manage their heath condition. However, this causes an awful conflict for most parents as you want to ensure your child is well and gets better, but you also want to protect your child from pain and distress. There are a number of strategies that can be used to help your child by either preventing anxiety in the first place, minimising the anxiety associated with the procedure or managing anxiety arising during the course of the procedure. Case examples below help demonstrate how these strategies can work. You can try using these strategies yourself, but also hospitals often have play specialists who are trained to help your child prepare and manage hospital procedures.
Case Study – Shannon (7 years old)
Shannon has severe and complex asthma. She now needs to go to hospital once every five weeks and stay for the day in order to have treatment for her condition. Shannon is already wary of hospitals because she has been going regularly since she was very young. She has had X-rays, scans and her lung function measured many times. Mum has agreed with the doctor that Shannon needs this more intensive treatment, or her asthma could have serious consequences.
Shannon knows she has to go to the hospital clinic, but her mum has not yet told her what will happen. Mum is worried that if she gives too much information, Shannon will refuse to leave the house. On the day of the appointment, mum is highly anxious. Shannon is aware that mum is acting differently and is constantly asking her what is going to happen.
It is really important in Shannon’s case that time is taken to help her mum feel calm in order to get Shannon to feel more relaxed before any procedure is done. This might mean that the schedule of the day takes longer but the risk is that if Shannon is too frightened, the procedure will have to be cancelled anyway. Have a look at the following recommended techniques to see how they might help you in your situation.
Talk to the medical team
Never be concerned about asking for time or someone to talk to in order to prepare for a procedure. Time spent preparing yourself and your child before a procedure is time well spent if it helps prevent treatments being cancelled or being carried out when your child is already very distressed. Patient satisfaction is an important outcome for hospitals, and nursing and medical staff would rather have a successful outcome and happy families than a complaint and distress.
If you have enough time before the event, it is worth talking to the nurse or whoever is doing the procedure so that you are clear about what is going to happen, and you have a plan to manage your child’s anxiety. If you go into the situation feeling more supported and confident in yourself, this will benefit your child. There are also lots of resources online that you can use to help familiarise yourself and your child with medical procedures (see the Resources section at the end of the book). You may also be able to meet with a play specialist who is trained to help your child prepare and manage hospital procedures. Although it will help to familiarise your child and yourself with what is going to happen, it is sometimes not enough in itself to prevent anxiety, and you both may still need additional support during the procedure itself.
This is found to work best in the early, anticipatory phase. You can use anything as a distraction technique, depending on the child’s age and interests. Younger children can be distracted by moving objects and toys, whereas older children may find counting forwards and backwards can occupy their mind. More often than not these days the best form of distraction is electronic, such as a game or film being played on a phone or tablet. Distraction is a very powerful tool; it seems so simple, but it is very effective, and parents often think it is too easy to be true until they have experienced it working with their children. Just try to take note of how many times in a day your partner or your child gets so absorbed in something that they no longer even notice or hear you. Think of a time when you have said, ‘No, we’ve lost him, you won’t get a word from him now . . .’; for example, when the football results come on the television or the theme tune for their favourite programme starts. Distraction works because all the focus of the child’s attention is on something else rather than on the feared procedure.
These are aimed at helping the child actively to learn mastery over anxiety rather than becoming passive and submissive. Breathing exercises can also help the child to divert attention away from the procedure because they are focusing their attention on something else. The procedure is best taught using modelling, with the child’s parent also doing the exercises. It can help to use a visual image to encourage the child to engage in the breathing; for example, pretending that your lungs are like a balloon, and breathing in over a count of two to fill the balloon, then slowly breathing out over a count of four to make the air flow out again.
If their breathing has become faster because of anxiety, using the counting will actually help slow it down, and it should also help them to begin to relax.
This is often used in conjunction with breathing exercises and the best imagery needs to be worked out prior to the procedure to fit in with the child’s interests. It works by making use of the ability of children to use their imagination to create a vivid image which helps focus their attention away from the procedure and also enables them to relax more. For example, you can ask them about their favourite superhero, cartoon character, role model or film star. A story is then developed that includes the character using their powerful, special skills to help the child cope with the medical procedure. Older children and adults can produce their own fantasy image that is incompatible with pain; for example, a favourite place they like to go to where they feel calm and relaxed. The health professional or parent then prompts the child to use their imagery during the procedure.
A film is made of another child with the same medical condition undergoing a procedure. The film includes the health professional guiding the child through the procedures. The child in the film describes his/her thoughts and feelings and how they are using coping strategies to reduce their worries. There are many films of this sort available for routine procedures online and some of these are listed in the Resources section at the end of the book. This can be particularly effective because it also helps the child understand they are not the only one who has to undergo these procedures, and also demonstrates a way of mastering the worry created by the procedure itself.
Practice and reward
The child rehearses the events of the procedure beforehand, including the stages of the procedure, each coping strategy and how they might feel. They then undergo the procedure using their coping strategy; e.g., blowing bubbles or counting slowly. The child then receives praise and an agreed reward at the end of the procedure, usually a badge or certificate, although in the case of older children, the satisfaction of undergoing the treatment successfully is reward in itself.
Child practising being the coach and using positive coping statements
This strategy works well for young children and refers to the child pretending to be the nurse and to carry out the procedure on one of their toys. The child coaches the toy to use breathing exercises and distraction. At each stage, positive coping statements are made as observations of the toy’s progress. So, your child might tell the toy what is happening, such as, ‘First, I am going to wipe your arm with a wipe, then get my butterfly to look at your blood . . . very good, teddy, you are being very brave . . .’ and so on throughout the procedure. Your child will benefit from this sort of technique if they are very familiar with a procedure that is frequently repeated; it also helps if they have a good imagination and are good at pretending. You are involved to describe and promote coping skills used by the toy (the toy is in place of your child, so you have to praise the toy as much as you would your child). This process is conducted on several occasions prior to the actual procedure; parents are then used to help coach the child at the event.
Case Study (cont’d) – Shannon (7 years old)
For Shannon, there was no time to arrange several preparation sessions prior to coming into hospital and so the best course of action was to help calm her anxieties and use distraction at the time of the procedure being done. The play specialist spent some time with Shannon to find out what sort of toys and activities interested her. Shannon accompanied the play specialist to her store to find some of the things she would like to take with her to the room. During this time, mum met with the nurses to find out exactly what would happen to Shannon, so they could work out what mum’s role could be. Some parents choose not to be present; Shannon’s mum wanted to be in the room and to sit close to Shannon, but out of the way. Mum was asked about her worries and concerns and was able to acknowledge that she was anxious and guilty that she hadn’t been able to talk to Shannon about it.
Shannon returned to her room with an array of activities and arranged them in order of preference around the room. Mum told Shannon that she had met the nurse and she was going to explain to Shannon what would happen. The play specialist reassured Shannon that she would stay and help her with her activities throughout. Shannon was given time to get her activities under way. The nurse told Shannon that she needed to get things started with her left arm. She asked Shannon where she would like her mum to sit and where the play specialist should sit to be able to help her continue her activities.
Shannon asked what was going to happen and the nurse explained that she needed to put a needle into her arm and wrap it up with a bandage. Her mum would help out by cuddling Shannon and holding her arm for her. Shannon showed signs of feeling worried and became upset and tearful – an acceptable and normal response. The play specialist gave Shannon some encouragement, ‘You can do it, this is easy for an expert like you,’ and distracted her with an activity, ‘Let’s just play this game on the iPad.’ The nurse was able to set up the infusion and Shannon’s relief and pleasure in being able to co-operate was enormous.
Sometimes fear and anxieties associated with hospital are as a result of pain occurring at the hospital due to procedures connected with the treatment or the medical condition itself. Helping your child manage pain is difficult. It is one of those things that can be successful for a while but then something changes and there is a flare-up and the child finds it difficult again. When any of us experiences pain, we perceive it as a threat. This makes it difficult to ignore, and our natural response is either to escape it or to protect ourselves from it. Therefore, it isn’t surprising that children will do anything they can to avoid pain and often turn to you to prevent it from occurring. They are only doing what is natural. For you as parents, though, this can be incredibly distressing, especially if there is nothing you can do to avoid the pain, because you know the procedure is necessary for your child’s treatment.
Pain and painful procedures can be a regular occurrence for children with physical health conditions. If the main symptom of your child’s condition is pain, then this should be managed by a pain specialist and a multidisciplinary team. The focus of this section is in guiding parents who have to help their child occasionally co-operate with a procedure that causes some momentary pain and discomfort: for example, dressing changes.
Case Study – Jonah (10 years old)
Jonah has severe eczema. He needs to have daily creams and occasionally needs a clinic visit to have more creams and dressings. Jonah finds these clinic visits anxiety-provoking and painful. Jonah’s dad, David, has asked for some help in managing Jonah when he needs the dressings applied.
This is a difficult situation for Jonah’s dad who realises he shouldn’t stop the dressings from being changed because this is a necessary part of Jonah’s treatment. It is important for you as a parent to believe that you are doing the right thing by looking after your child’s health, even if the treatment does result in your child feeling some pain.
It used to be thought that pain was purely a physical phenomenon, which meant that doctors would examine the symptoms reported to be painful, identify a cause and prescribe medication with the expectation that this would stop the pain. However, this doesn’t take account of the variation we all have in how we experience pain. In some situations, the experience of pain is reduced; for example, if your child is engrossed in an activity they may tolerate pain more easily than if they are focusing on the pain. Similarly, we are more likely to notice pain if we are worried about it; for example, if we are concerned it is a symptom of something getting worse. There are also differences in how families respond and cope with pain and your views will affect how your children respond to their own symptoms. You may also notice differences between children; maybe you have one child who is very sensitive to pain and another who never complains.
This is due to the complex nature of pain that is a combination of physical messages from nerve endings and an interpretation of these messages made in the brain. We now know that pain is influenced by psychological as well as physical factors, and this means managing pain can make use of both physical and psychological approaches.
There are some ways in which pain can be managed that involve changing the way it is thought about. This does not mean that the pain isn’t there or your child is making it up. We now understand that once the nerves send messages to the brain, the brain has the capacity to interpret the pain and this will affect how much it is perceived to hurt. This process is more complicated in children because they don’t have enough experience to be able to make sense of this sensation of pain – they need your help to know how to think about pain.
Helping Your Child to Manage Acute Predicted/Repeated Pain
Case Study (cont’d) – Jonah (10 years old)
Jonah and his dad met the psychologist at a time when Jonah did not need any painful procedures done. Jonah was asked to look at a rating chart like this one:
Jonah was asked to point to the face that showed how much pain he was in right at that moment. Jonah picked 2. He said he didn’t have a lot of pain, but he was a bit worried because he didn’t know what was going to happen. This was a very useful example to start with, as it demonstrates that worry and anxiety can also affect the rating of pain as well as painful things happening.
Jonah and his dad made a list together of all the things that are painful for Jonah associated with his hospital visits and they then used the 0-10 rating scale to indicate the level of pain in each situation and put this into a table:
|What is happening||Rating Scale|
|Routine clinic assessment with no treatment done||2|
|Nurse putting creams on||6|
|Dad putting creams on||4|
Jonah then explained why it was less painful when dad put cream on compared to the nurses. He said dad took longer, allowed him to watch TV and gave him breaks. The psychologist told Jonah he already seemed like an expert in psychology strategies and explained to him what he was doing and why it helped:
• Watching TV was making use of distraction, taking his mind off the procedure and focusing on the TV instead
• Taking breaks was making use of his rating scale and pacing himself; when he felt the pain moving to the next highest level, he was taking a breather
• Jonah and his dad were asked to think of other things they could do to make the pain easier to manage, and they came up with:
* Getting a treat (Jonah’s idea) or having something to look forward to (Dad’s idea)
* Not focusing on and talking about the procedure
* Going slowly
* Being OK to say it hurts
* Stopping for a breather when Jonah is getting worked up
* Jonah choosing where he sits and what he watches
Jonah was able to feel included in recognising that he feels pain, feeling believed and knowing it was OK to say he was in pain. He found his rating scale very helpful because he could point to it and show people if it was changing. Jonah also felt like he was making progress because he knew he was already saying yes to having his painful treatments done, rather than everyone talking about this as a problem which was difficult to manage.
Parents Are Part of Pain Management
Though it may be very difficult for you to watch your child in distress, it is important that you are part of the strategy to help manage pain. With children, it is about thinking differently about the pain, and parents can be essential in finding out what their children are thinking. You can help support your child by engaging with coping strategies and focusing on distraction activities and managing pain in everyday situations. Often parents become so concerned about the reports of pain from their child that they continually seek more and more investigations. However, sometimes the best thing you can do as a parent is to help your child with coping strategies. You as parents can:
• Tolerate distress and discomfort in your child without trying to fix it – acknowledge the pain and give comfort
• Be present with your child as a source of comfort
• Learn to respond to and give attention to desirable behaviour, such as coping and engaging in activity rather than behaviour associated with pain or expressions of pain
We have included this subject in the anxiety and phobia chapter because, although many children do not have any difficulty swallowing tablets, we have found that if difficulties do arise they are often connected with worries and anxieties rather than a problem with technique. The suggested approach can be done with any child, not just those with anxieties about swallowing; it is a practical, calm method of introducing tablet-taking.
Paediatricians generally prefer children to take medications in tablet rather than liquid form (in suspension). This is because the dosage, digestion and absorption of the drug are better in tablet form. For children taking long-term daily medication, it is worth teaching them to swallow tablets from an early age. Children can learn to swallow tablets from about the age of three, and it is best to teach the practice before the age of six years. After this age, they tend to think too much about it, which is where the anxiety comes in. So you are less likely to have difficulties the earlier you start.
If your child is older and it is hard to get them over the initial hurdle of swallowing, there is an approach known as ‘pill school’ which involves starting with a very small amount of food, and gradually working up in size so that pill-sized amounts can be swallowed. This is a way of desensitising them to the fear of swallowing, which can help them get over their beliefs that they are unable to swallow. If there are problems with this approach in an older child, then you should access support from your medical team such as a nurse specialist or a psychologist.
Children with anxiety or refusal to swallow tablets often believe or fear that the tablet will get stuck in their throat or they will choke. Like the other phobias and worries described above (e.g., needles and blood tests), it often results in anticipatory anxiety, not usually from an actual experience of choking, but from anticipating that this will happen. Very commonly, when a child has difficulties swallowing tablets, one of the parents also reports that they have difficulties with tablets, too, and tend to avoid taking them whenever possible.
So the first thing to do is to check your own thoughts, actions and comments regarding tablet-swallowing. Are you signalling to your child that you are concerned? Think about what you have said; maybe without thinking, you have commented, ‘Look at the size . . . he will never be able to swallow that,’ or had a look of concern on your face. Children are very good observers and young children take their cues from you. If you are signalling ‘worry’ then your child will begin to feel an instinctive anticipatory anxiety response and will be apprehensive about it. If you signal ‘competence’ (i.e., that it is something that can be done), then they will be more likely to give it a go.
The Nine-step Plan
Generally, this is introduced around about three years of age and, as mentioned above, it is best to achieve this before the age of about six years if possible. The idea is to start at a level your child can already achieve and then build on success. Assuming your child has no physiological reason why they can’t swallow and they can already swallow food with no difficulty, then they can learn to swallow tablets. The nine steps below will help your child to learn this new skill.
Step 1 – At a usual mealtime, suggest that you and your child (other children can join in) play a game of ‘Abracadabra’ to see if they can make their food disappear. You need to make sure that you and your child/children have their favourite drink to hand.
Step 2 – Tell everyone to get a really small bit of their food – e.g., one grain of rice, or one Rice Krispie (it is best to choose a food that is already quite soft). You then say that everyone has to get their drink ready, put their one bit of food in their mouth, and then take three sips of a drink. They then open their mouths and say, ‘Abracadabra . . . it has disappeared!’
Step 3 – Look around to check the food has gone and praise everyone.
Step 4 – See if your child can do this with a larger amount of food.
Step 5 – Repeat this at any mealtime but don’t make it a big deal.
Step 6 – Discuss with your paediatrician that you would like to introduce your child’s medication in tablet form, so discuss the dosage and ask for a prescription.
Step 7 – Tell your child that you know that if they can easily make their food disappear then they would easily be able to make a tablet disappear. Show them the tablet and ask if they want to have a go. With younger children build on their desire for achievement; most children can be encouraged by saying things like, ‘You would be such a grown-up girl if you can do this . . . I think you can do it.’ Older children who show anxiety will need a different approach; you will have to show them that you know they can already do it because they have swallowed larger sizes of food playing the Abracadabra game.
Step 8 – Get their favourite drink ready and repeat the Abracadabra game using the tablet. Obviously, only your child joins in! If they manage it, then give lots of praise, tell family members to increase positive attention and possibly give another small treat.
Step 9 – Tell your child that from now on they can do grown-up tablet-taking. Make it normal practice. If your child has a blip and refuses, do not force the issue: just go back to occasionally playing the Abracadabra game until they build up their confidence again.
Many children learn this very quickly and often surprise their parents. Once tablets can be swallowed, there is rarely any turning back; blips are often quickly overcome because children learn that tablets are much more convenient and quicker than liquid suspension and, more often than not, there is no taste from tablets.
Hospital Phobia in Parents
Sometimes parents find that their child needs to attend hospital on a regular basis and they have to face their own fear of hospitals. In some cases, just the knowledge that their child must go to hospital is enough for the fear to be overcome, but some parents need further support in their own right. The bottom line here is that if you have a hospital phobia and your child needs to go you will have to face your fear and get help to manage it. No one can support your child as well as you can, so you need to be able to be there for your child.
Case Study – Stevie (6 years old)
Sean is the father of Stevie, aged six, who has juvenile arthritis. He needs to be seen in clinic regularly and requires occasional admissions for a few nights. Sean and Stevie have a very good relationship, but Sean cannot attend any of the hospital appointments with his son as he has a severe hospital phobia. Stevie gets distressed when he has to be admitted and is often in a lot of pain requiring unpleasant procedures. Sean is aware that he has to face his hospital phobia. This is the step-by-step approach taken with Sean.
Step 1 – Sean was helped to make a plan jointly with the psychologist at Stevie’s hospital, starting with his eventual goal of being with Stevie in hospital and working backwards in small steps to the point he is at now, his starting point. We called this the ‘hierarchy’. (For young children, other words can be used such as ‘goal list’ or ‘target list’.)
Step 2 – Sean was taught some relaxation techniques to manage anxiety when he felt overwhelmed (see the Resources section at the end of the book for some websites useful for psychological wellbeing).
Step 3 – Sean went through each step on his hierarchy and identified negative thoughts that made it more difficult for him to achieve the steps.
Step 4 – Sean was taught how to challenge each of the negative thoughts, by using an alternative, less anxious thought; we called these his ‘safety nets’.
Step 5 – Sean was asked to think of a reward for achieving each of the steps towards his goal.
Starting point – Driving wife and Stevie to hospital but not going in.
Negative thought – I should already be able to do this . . . I feel embarrassed that I can’t do it.
Safety net – I am already on my way to achieving my target because I have started on this plan and I will be able to drive to the hospital. I don’t need to feel embarrassed.
Reward – Pleased with myself that I already have the first step under control.
Building skills – Going to the hospital on my own but not for any appointments with Stevie.
Negative thought – I will just walk by and not be able to go in.
Safety net – It is a building that my son is used to, he knows the nurses and doctors, he feels comfortable here, so I can do this.
Reward – Tell Stevie that I did it; I’ve been into his hospital.
Getting used to it – Visiting the ward during inpatient admission for Stevie.
Negative thought – I won’t be able to walk into the hospital.
Safety net – Take calm deep breaths. I am only staying for a short time, I am just going to see if Stevie is OK then go home.
Reward – Proud of self, reassured that I can do this, wife and Stevie pleased.
Making progress – Going to Stevie’s outpatient appointment with my wife.
Negative thought – I won’t be able to go in and will leave it to my wife.
Safety net – I am with my wife, it isn’t like a hospital, it is a building and my wife knows what to expect.
Reward – All out for lunch afterwards.
Nearly there – Take Stevie to his outpatient appointment alone.
Negative thought – I will panic and will have to go home and Stevie will miss his appointment.
Safety net – Calm deep breaths, Stevie knows what is going on, I have already done this, I know what to expect, nothing bad happens.
Reward – Toy shop on the way home for Stevie.
Target – Go to hospital and stay overnight with Stevie.
Negative thought – I will panic and have to leave which will upset Stevie.
Safety net – If I sense panic, I do my calm deep breaths, I tell myself, ‘You can stay, this is just a building, I am just staying in my son’s bedroom.’
Reward – Proud of myself, trip to cinema with family.
Sean worked though his steps with the help of his family and he was able to repeat any step as often as he liked before he felt he was ready to move to the next. After a few months, Sean achieved his target goal.
Most hospitals will have hospital play specialists or clinical psychologists who are experts in techniques to help control anxiety associated with procedures and tests. You should ask your doctor or nurse about getting help from a clinical psychologist or play specialist if you think you and your child can benefit from some of the strategies mentioned in this chapter.
• Anxiety and fear are normal reactions to frightening or painful procedures.
• It is important for you as parents to feel confident when helping your child with procedures – you have the difficult task of trying to make sure your child gets the right treatment but also having to manage your child’s distress.
• Be assertive about asking for time to plan the procedure if you feel you or your child needs this – it is better to spend time on this than to cancel a procedure.
• There are a variety of techniques to use – these are best planned in advance to choose the right approach for each individual child.
• Keep anticipatory anxiety to a minimum by planning before the procedure and giving the child some limited choices when this is possible.
• Hospital play specialists can help with preparation for procedures and distraction during procedures.
• Clinical psychologists can help when the problem interferes with treatment and if the child has more generalised anxiety; for example, worries about a lot of things, or if the anxiety is so severe that you as parents would like further help.