Coping when your child is ill and in hospital

This is page is for parents or carers of children who are ill and in hospital. It describes some of the reactions that parents or carers may experience when their child is ill and in hospital. It also describes some practical coping strategies that some parents or carers find helpful.

Introduction

Having a child who is ill and in hospital is a very stressful experience. Parents and carers report experiencing a wide range of emotions including anger, sadness, and guilt. When your child is in hospital it is very important to not just take care of them but also to take care of yourself. Not looking after your own needs can lead to “burn out” and feeling overwhelmed with stress.

You may also have worries about other family members. For advice on managing the needs of siblings see our leaflet “Brothers and Sisters: What can help when a sibling is ill or in hospital”.

Looking after yourself means having regular breaks. We encourage you to be with your child while they are in hospital, but it is important to have short breaks and leave the ward to have meals, drinks, and to get fresh air and sleep. If you are not looking after yourself you won’t be as effective at looking after your child due to fatigue. It might be helpful to remind yourself when you are doing activities to look after yourself that you are doing this for your child.

Daily routines

Parents and carers often find it useful to develop a daily routine, where they come to ward each morning at the same time and plan regular breaks throughout the day, then have a regular evening mealtime and bedtime. This can help with feelings of tiredness and also feelings of being out of control and stressed. Planning daily routines can be difficult to do and it might be useful to speak to a member of staff who is looking after your child to see if they can help you think about what the most useful daily routine would be.

Support

Having support from friends and family is very important when your child is in hospital. This can be difficult for some families especially if you are a long way from home. Often phone calls, texts, social media and video calls can help families feel connected.

Sometimes communicating with family and friends about your child’s condition can be stressful. Some families find it useful to ask one friend of family member to be the link person for them who contacts everyone and passes on information about how your child is doing and their treatment.

If you have questions about your child’s care please speak to a member of staff. Within the hospital there are also chaplains, social workers, and psychologists who may be able to support you with specific issues e.g. chaplains can support with religious, spiritual and pastoral care, social workers can support with financial and practical issues e.g. housing issues or contacting your employer. Psychologists can support with any anxiety and low mood you may be experiencing, they can also support your child if they are having specific psychological difficulties related to being in hospital or their health condition. Speak to a member of ward staff about how you can get to see these services.

Your health

When your child is in hospital it is very important to take care of your own health. If your child is going to be in hospital for a while and you are a long way from home it might be useful to register with a local GP, particularly if you yourself take medication or have specific health issues. Speak to hospital staff about this as the hospital has links with local GP practices.

Common difficulties

Sometimes parents and carers experience specific difficulties while they are in hospital. This section outlines some strategies that may help with common difficulties.

Trauma symptoms

Your child being in hospital can be traumatic. A traumatic event occurs when someone feels very frightened, out of control and they perceive there is a threat of serious harm or death to themselves or someone else.

After a traumatic event it is normal to experience trauma symptoms. When traumatic events happen they are stored in the brain in the form of sights, smells, sounds, feelings and thoughts. Often when a person is very frightened or distressed the brain does not store the memory in the usual way and the memory gets “stuck”.

Usually with a bit of care and attention these difficulties get better over time e.g. nightmares reduce over a number of weeks.

If you find that you or your child is experiencing these symptoms and they do not resolve or are significantly interfering with daily life you should seek help. Some people may need help to get the traumatic memory “unstuck and to help process it”.

You can access help in relation to trauma from your GP or speak to your medical team to see if you can access support from clinical psychology. 

Experiencing excessive worries

Your child being in hospital is understandably a worrying and stressful time. It is normal to feel worried. If these worries are significantly interfering with daily life then it might be useful to get some further support and to try some of the following strategies:

• Try to focus on the here and now and not think about what ifs. People often refer to this approach as “living day to day or one day at a time”.
• Try writing down your worries in a diary or note pad, sometimes writing down worries can help to get them into perspective or can help you devise a plan to solve the worries.
• Sometimes when people are experiencing anxiety and stress they may turn to cigarettes, alcohol or substances, these can give short term relief but are unlikely to help in the long term and can have health implications.
• Talking with friends, family or a trained professional may help you manage your worries.
• Try and create room for these worries or worrying thoughts – try and not push them away. Create room for them to be there and focus on things you can do day to day that are helpful/enriching. 

Sleep difficulties

Parents or carers may also experience difficulties with their own sleep. This may relate to worries or to changes in routine.  Having better sleep can help with coping and make you more able to support your child. 

Below is a list of some of the things which might particularly affect sleep in such circumstances:

• Anxiety can make our bodies more tense and alert, causing difficulties with falling or staying asleep. 

• Worried thoughts at night can make it difficult to ‘switch off’ and keep us awake. 

• Our surroundings can impact on sleep.  If you are away from home for example on a ward or in other hospital accommodation, things such as unfamiliarity, noise, light or discomfort may affect ability to sleep. 

• Disrupted routines such as reduced levels of physical activity or unpredictable sleeping times can make falling or staying asleep more difficult. 

• Changes in diet can also reduce ability to get to sleep for example more caffeine or hard to digest foods. 

Here are some tips which could help to improve your own sleep:

• Set up a routine for going to bed.  Try not to do anything too active for 90 minutes before bed. Set aside this time for relaxing.  

• Try to go to bed at the same time every night. 

• Don’t try too hard to sleep; this can have the opposite effect.  Say to yourself ‘my body will sleep when it is ready, relaxing in bed is still resting.’ 

• Try counting backwards from 99 to distract from worries about sleeping or other things. 

• Try keeping your eyes open in the dark for as long as you can, this can help to bring on sleep as your eyes naturally want to close. 

• If you can’t get to sleep after 30 minutes of being in bed, get up and try to relax in another room, then go back to bed. Try not to lie in bed for a long time if you are unable to sleep. This gets your body into the habit of being awake in bed. 

• Avoid caffeinated drinks such as tea, coffee, hot chocolate or fizzy drinks in the evening. 

• Try not to nap during the day, even if you feel tired, this can disrupt your sleep pattern for the evening. 

If you are finding it hard to let go of worries at night, try getting out of bed and writing them down.  Then tell yourself there is nothing you can do about this at the moment, it is time to sleep. 

Difficulties relaxing

It is common to experience difficulties with being able to relax, sometimes you may find your concentration is also affected. Planning breaks or pleasurable activities can be very helpful e.g. a walk round the hospital grounds, reading a book or watching a favourite movie. There are also some specific activities that can help your body physically relax often when we are stressed our body holds a lot of anxiety and tension.

Breathing exercise

We breathe without thinking about it. Sometimes our breathing can feel irregular and we take faster, shorter breaths than we need. This can make us feel panicky or light headed, and is a normal part of the ‘fight or flight’ reaction. We can use breathing exercises to slow our breathing down. Follow this step by step guide:

• Get yourself into a comfortable position.

• Notice your breathing.

• Rest one hand on your chest and one on your stomach.

• Take slow deep breaths through your mouth.
  
• Notice how your stomach rises as you breathe in and falls as you breathe out.

• This shows that you are breathing from the very bottom part of your lungs.

• Breathe in while you count to two in your head.

• Gently hold your breath while you carry on the count to four.

• Slowly breathe out while you carry on the counting to six.

• Repeat this until you are feeling calmer and less tense.

Physical relaxation

Physical relaxation is a kind of exercise routine to deliberately tense and relax muscles in our bodies in a step by step way. You might prefer to do this when you are on your own in a place where you won’t be disturbed. Follow this step by step guide for physical relaxation:

• Get yourself into a comfortable position and take some slow deep breaths.
  
• Close your eyes if it feels right for you and let worrying thoughts float away like sticks down a river.
  
• The aim is to work a muscle group to make it tense, then to let it go floppy and heavy.

• Start with your shoulders, bringing them up towards your ears.

• Notice the tight feeling you have when your muscles are working.

• Let the muscles go floppy quickly and notice how heavy they feel.

• Rest the muscles for a few seconds then do it all again.

Be careful when doing these exercises; do not push yourself too much. If you experience any pain or discomfort stop the exercises.

Use this routine of tensing, holding and going floppy with other muscle groups around your body:

• Arms and hands – clench your fists and push your arms out straight in front of you, then let them rest by your side.

• Legs and feet – push your toes downwards, gently raise your legs and stretch them out in front of you, then let them rest.

• Stomach – push out your stomach muscles, take a breath and hold it, then relax.

• Face – screw up your face to squeeze your eyes tight, push your lips together, then relax.

• Forehead – raise your eyebrows, hold them up high then let them down.

When you have tensed and relaxed these muscle groups, you should notice that your whole body feels relaxed and that your breathing has slowed to a gentler rate. Spend a few moments enjoying the relaxed feeling that you have created in your body. You might feel a bit cool because your temperature will have dropped slightly. You might want to put a blanket over you to warm up.

Imaginative relaxation

We always have our imagination with us wherever we go, which means that we can use it to help us anytime. We can choose what we think about and how we let our imaginations take us to places we feel safe and calm. For example, think about when you concentrate very hard on a book, film or game and you don’t really notice what is going on in the outside world. Imaginative relaxation works in the same kind of way.

Imagine a place where you would feel safe and calm. Some people would choose their bed, a beach or lying beside their pet. You can choose anywhere you like, so long as it is a place you can imagine well.

Concentrate really hard on the details of this place and try to imagine yourself there. Think about what you can hear, what you can see and how things would feel in your imaginary safe place.

When you do this your imagination might try to bring you back to things that are worrying you or everyday stuff. This is normal and doesn’t mean that you have to give up. Keep bringing your imagination back to the safe place that you have decided on.

Clinical psychology

This has been produced by the department of psychology in healthcare. Clinical psychologists are based at the RVI and Freeman Hospitals. Clinical psychologists have been trained to understand how people, think feel and behave. Some families have found it useful to talk to the clinical psychologist about their experiences having a child who is ill and in hospital. If you have any further concerns about the issues discussed, please discuss these with your GP or medical team.