When your child is in the Intensive Care Unit

Each family will experience their time on intensive care differently and find different aspects of the situation difficult. There is no right or wrong way to feel.

Common reactions from families may include:

• Feeling anxious, irritable, or becoming easily upset.
• Experiencing shock, helplessness, feelings of loss of control and fear.
• Finding it difficult to maintain the role of a parent/carer when there are many different people looking after your child and/or when your child is asleep or heavily sedated.
• Functioning on ‘auto pilot’.
• Not wanting to leave your child’s side.
• Finding it hard to concentrate and take in information. Needing information to be broken down, repeated, and written down.
• Trouble sleeping or eating.
• Losing track of time and the situation.
• Feeling guilty.
• Feeling anger and despair if there are unexpected setbacks with recovery.

These are all normal reactions, which may last for a few days or weeks depending on your child’s recovery. Usually, as you adjust to the situation and your child’s health improves, stress reactions may reduce.

It is not uncommon for parents/carers to remain very alert for setbacks for the whole of their child’s admission. If your child has a setback on intensive care, you may feel like you’re on a roller-coaster ride, having ‘good days’ and ‘bad days’.

You may think you need to remain ‘strong’ for your child and family which can be an added emotional strain.

If there are other children in the family, they may also be upset by the disruption and worry of having a sibling on intensive care. This can be shown by:

• A change in behaviour, including ‘acting out’ or ‘misbehaving.’
• Pretending everything is fine.
• Being tearful.
• Appearing quiet and withdrawn.
• Becoming ‘clingy.’
• Feeling that they’re being ignored, or that you are favouring your sick child by spending a lot of time at the hospital.
• Performing less well in school than normal (if your child is on intensive care for a long time). This often resolves itself but can be an additional worry at a stressful time.
• Some children ask a lot of questions, while others do not ask any.

To be a helpful support to your child, you need to look after yourself during this time. The professionals who are caring for your child all need to take breaks from the intensive care environment- you need to take breaks too.

Take care of yourself:

• Anxiety is normal, but it can be reduced by taking regular breaks away from the ward and trying to eat and sleep, even though this may be difficult. You’ll need food and rest to enable you to take in the information that you will be given about your child. You may be entitled to meal vouchers whilst you’re on ICU- please ask your child’s team for further information.
• It can be helpful to structure your day with regular times for meals and rest to break up the time you spend on the unit.
• Trying to do things to relax and improve your mood like going for a walk, taking a bath, or meeting/speaking with friends. This can help you manage your anxiety even if these things only last a short while. There are some lovely gardens in and around the hospital- please ask your child’s team for information and directions.
• It is ok to leave the unit, go somewhere else and even enjoy yourself at times. This does not mean you do not care about your child- it is just a way the body and mind try to cope with a stressful situation.

Ask questions:

• If something is not clear or you need more information, please ask.
• It can sometimes be helpful to write down a list of questions before you meet the doctor or nurse.
• Don’t worry if you forget to ask something important. It can be harder to take in information and remember at stressful times. You can always ask more questions at another time.

Get support from family and friends:

• It can be helpful to contact one or two key people and ask them to contact and update others rather than doing all this yourself.

Setbacks:

• Be aware that setbacks can happen. Try to concentrate on the steps to come and try not to become discouraged. Focus on how best to manage the day for you and your family.

Just being there

• Being there for your child during this time is as much as anyone could ask of you. Talk to your child’s nurse about being involved in the daily care of your child, such as washing or nappy changing. Parents have told us that this can lessen the feeling that there is nothing they can do to help.

Comfort:

• Bring in photographs or a toy to try and make the hospital feel more familiar.
• If it is medically safe you can use also touch, for example, stroking or holding to help your child feel secure. Please ask for advice if you are not sure- staff will be happy to offer support.
• Offer distraction by reading or, if your child is old enough and awake, playing a game. Try to take a break if you notice you’re getting tired or anxious.

Understanding:

• Try to help your child understand what is happening to them- this will help them feel safer in hospital. Consider what information is right for them to know for their age. Sometimes the ‘basic headlines’ are enough but other children find it helpful to have more details. Medication can sometimes make children forget, so you may need to tell them again.
• Answer any questions they have in an honest way that is appropriate for their level of understanding and sensitive to their emotional needs. If you are unsure about how to answer your child’s questions, you can always ask advice from the medical or psychosocial teams.
• Encourage your child to talk about how they might be feeling. It can be helpful for you to name difficult feelings such as anger, happiness, sadness, and worry. Explain that these are normal and understandable feelings to have in hospital.
• Don’t worry if you cry in front of your children. Explain why you are upset and make sure they know it’s not because of something they have done. It is helpful to know that you feel sad that they are unwell and in hospital.

Routine:

• Try to stick to a daily routine and work together with the healthcare team to achieve this. For example, your child might always have physio in the morning, then school and rest in the afternoon. This will make the hospital environment more controllable and predictable. Try not to make the routine too rigid in case things happen at times that are unexpected.
• Where possible, let your child know when you are leaving the ward and when you are coming back.

Understanding:

• Take time to explain what is happening to their brother or sister who is ill. Try to explain at a level that they will understand and in a way that is not over emotive. These conversations can happen little and often- there is no pressure to say everything all in one go.
• Reassure them that they were in no way responsible for what has happened and that the same is not going to happen to them.
• Try to answer their questions as honestly as possible. If you do not know the answer, say so. Offer to ask the nurses and the doctors or encourage the child to do so.
• It may be helpful to regularly remind them that they can ask questions if they want to.

Routine

• Try to maintain some routine and normality. Keep up expectations for appropriate behaviour and keep to the boundaries you would set at home. This can be reassuring for children when other things have to be different for a while.
• Set aside special time with them, especially if you are spending long periods at the hospital.

Visiting

• Siblings of all ages are welcome to visit, but it can be helpful to prepare them first. This may involve talking, or showing them photos, so that they know what sights and sounds to expect.
• It is usual for children, particularly younger ones, to not want to spend too long at the bedside. Accept their choices and allow them to go off and play if they want to.
• It can be helpful for siblings to draw, write, or make something for their sibling who is ill or bring in their favourite toy or music. This can also be helpful if they cannot or do not want to visit.

We have a psychology team who work specifically with our ICUs, who can offer support to you and your family.

They can work with you on issues, including:

• Managing stress and anxiety.
• Helping with decision making.
• Helping your child cope with procedures.
• Working with siblings.
• Support you with the transition home or to another ward or hospital.

They can work with you either by the bedside or in a confidential space away from the bedside- whichever you prefer.

If you would like to contact a psychologist directly, please call 020 7405 9200 extension 5166 and ask to speak to one of the psychologists.

We also have other professionals in our psychosocial team, who can support you and your family on the ward including:

• social workers
• family support officers
• family liaison nurses
• play specialists
• chaplains
• ICU specific volunteers.

These professionals work very closely with the doctors and nurses and have a lot of experience in supporting families on our ICUs. They will often visit you by the bedside, but if you would like to speak with them at other times, please ask your child’s doctor or nurse.

The potential trauma and distress of ICU may mean that you are as much in need of support as your child in adjusting to life after ICU. Sometimes parents/ carers put their feelings ‘on hold’ whilst their child is on intensive care, and it is only afterwards that they begin to feel upset.

Families have told us that after ICU they have experienced:

• Difficulty sleeping, feeling constantly exhausted.
• Nightmares/ bad dreams.
• Anxiety and worrying, panic attacks and phobias.
• Depression or feeling very low.
• Feeling very emotional- sad, irritable and angry.
• Feeling jittery and having difficulty relaxing.
• Going over what has happened repeatedly.
• Difficulty concentrating.
• Overworking.
• Stress and tension in relationships (particularly between parents).
• Difficulty coping with their ill child, or with siblings.

If any of the above become unmanageable, it can be helpful to talk to a professional about this. Please ask your child’s nurse or family liaison nurse who can help you access support.

What else can help?

• Accepting help and support from friends.
• Accessing local emotional support- your GP will be able to advise you further on local support.
• Joining a support group- it can be helpful to speak with other families who have experienced ICU. There may be specific support groups available- please ask the family liaison nurse for further information.
• Taking time to be with your family and also to be alone.
• Try to eat a healthy diet, ensure good rest and exercise. Please speak with your child’s nurse or family liaison nurse to find out more about free gym passes, massage and other support we can offer.

Please contact the Family Liaison Team if you would like further information and support.

• Cardiac ICU- Flamingo Ward: 020 7405 9200 Extension 6357
• Paediatric ICU- Seahorse Ward: 020 7405 9200 Extension 6347
• Neonatal ICU- Dolphin Ward: 020 7405 9200 Extension 6347

The Rainbow Trust is a charity which supports families with a seriously ill child.

You can find out more on their website:

The Rainbow Trust website