Ways to help your child

Ways to help your child

This leaflet is part of a series to give information, advice and practical strategies on how families can help their child, other siblings and themselves through the stressful time of a Paediatric Intensive Care Unit (PICU) admission.

Most parents find it very stressful to have their child admitted to PICU. Often admissions are unplanned, you are worried about your child’s health and you are in an unfamiliar place. You may also feel stressed because your feel unsure on how best to support your child.

Important things to remember:

• You know your child best
• You are still the most important person for your child and the best person to provide love, comfort and support
• Visit/stay as much as you wish but remember to take breaks and rest away from the unit too..

Some things you can do to help your child in the early days:

• Talk to your child, hold his/her hands, stroke him/her, sing to him/her, read a familiar story. Even if you are not sure how much he/she is able to hear or understand this will be comforting
• If you are nervous about touching or holding your child because of the various tubes and equipment, tell the nurses who will help you.
• If you feel comfortable you can help with aspects of your child’s care, eg washing, turning or preparing for procedures.
• If you are present during a painful procedure, you may wish to support your child by stroking or talking gently to them or trying to distract him/her. It is also ok to not be present during procedures, you may be asked to leave by the team.
• Bring in familiar things from home, such as toys, photos, music, a recording of family members reading a story or singing.
• Remember to look after yourself by taking regular breaks, keep eating and drinking, and getting some sleep.
• Parents are asked to leave the unit during ward round, this can be a good time to take a break for yourself.
• Try to talk about your feelings with somebody away from the bedside; it’s natural to feel upset at times.
• Some people find keeping a diary, either for themselves or for the child, can be helpful. This could be a written diary or voice recordings on a phone.

Further into your stay

You may see changes in your child’s usual behaviour as he/she becomes more awake and tries to make sense of the experience of being in hospital.

Common behaviours and feelings that you may notice:

Fears and worries

Children can become very fearful and worried when they are in hospital. They can also experience nightmares.

• Try to establish some regular daily routine, particularly around bedtime.
• Tell your child the plan for the day so he/she knows what to expect.
• Prepare your child for when you have to leave him and talk about who will be looking after him/her.
• Spend special time with your child, doing something they enjoy.
• Reassure your child that they did not cause the illness and it is not their fault.
• If your child has been on a ventilator they may experience withdrawal symptoms from the medication e.g. inability to sleep, irritability, hallucinations, jittery – these are temporary.

Anger/Aggression

e.g. temper tantrums, hitting out, angry with family.

• Name your child’s angry feelings – all feelings are ok but children need help to express them in ways that don’t hurt anybody.
• Help your child to express angry feelings with words or in play or in drawings eg squeezing playdough, acting out with playmobil figures or drawing feelings.
• Set limits on inappropriate behaviour.

Difficulty co-operating in hospital

eg not wanting to do physiotherapy exercises, not wanting to move around.

• Children usually have little say over what happens to them in hospital and these behaviours can be their attempt to gain some control over the situation.
• Give your child age appropriate choices so he/she feels he/she has some control over what happens, eg choosing what he has to eat or choosing what activity to do.

Regression

Many children return to doing what they did when they were much younger eg sucking their thumbs, being very clingy, difficulty sleeping..

Accept regression as part of the recovery process, reassure your child, and give lots of comfort as he/she recovers. Start to encourage him/her to do more things for themselves and praise appropriate independent behaviour that you notice.

Feeling and acting sad and withdrawn

eg losing interest in things that they previously enjoyed, tearful.

Let your child know that is it is ok to feel sad and that all feelings are ok.

Use play, drawing and painting, or music to talk about sad and happy feelings. You can use simple face drawings to help a younger child identify or talk about happy/sad/worried/angry feelings.

Be gentle with yourself and your child and allow time to recover.

However, when back home, if you do have concerns at any point, please contact your GP who can refer on for local support as needed, or contact the PICU psychosocial team.

Contacts/Further information

The PICU psychosocial team can be contacted during your stay, please ask your nurse or doctor to contact us and we will visit you to find out the best way of supporting you.

The PICU psychosocial team admin number is 01223 216878 and you can leave a message and someone will get back to you.