Your child's medical treatment: Making decisions and supporting your child
Advice on exploring treatment options, having conversations about treatment with your child and tips on how you can support your child’s recovery.
A checklist of things to consider before your child goes into hospital for treatment for their visible difference, to make things as easy for them as possible.
Depending on your child’s condition, mark or scar they may have to spend some time in hospital. This can feel very distressing, even with a great medical team and nursing team around them.
Being in an unfamiliar medical environment away from the place they know can be upsetting and scary for your child as well as for you and the whole family.
Here is a checklist to make things as easy as possible for you and your child if they will be staying in hospital.
Gather as much information as possible about what will happen to your child during their hospital stay. You can ask your doctor, nurse and the Patient Advice and Liaison Service (PALS) at the hospital.
Although it can feel daunting, interacting with health professionals can be positive and an opportunity to get answers to any questions you have. It will also mean that you are familiar with the jargon, the different roles and even some of the medical staff who will be looking after your child while they are staying in hospital.
It is helpful to find out what the ward is like. You could ask the medical team or you might find information on the hospital website.
Look out for information about the children’s ward, such as:
Children of different ages may react in different ways. Babies under eight months old can usually be more easily comforted by parents and nursing staff. However, toddlers may be more fearful of new places or find it hard to be restricted to their beds, rather than running around. Older children may feel anxious or upset.
These are some of the natural responses your child, particularly if they are young, may have to being in hospital:
Although this may cause you some concern, these reactions will usually pass as your child adapts to the situation and environment. You can reassure your child just by being with them and helping them with their reactions – this may help them adapt more quickly.
Staff on children’s wards are all too familiar with the challenges of keeping young children happy and often there are playrooms and toys to help you keep them entertained.
If there are specific things you need to take for your child while they are staying in hospital, hopefully your medical team will have discussed this with you or you will find it outlined in hospital letters.
Some things to think about:
Packing and choosing what to take can help children, even toddlers, to feel more in control. This will help reassure them going into an environment where lots of decisions and choices are being made for them.
You may be feeling anxious, but don’t forget that you may be doing a lot of waiting around and that at times you will probably get bored.
If you have other children, plan who will take care of them while you are staying in hospital. This can be very tricky and vary depending on your personal circumstances.
If you have a partner and are planning to split the childcare, make sure you have time together to support each other.
For extended hospital stays, you might want to take it in turns to have a night at home to get some more rest. Hospitals are not the best place to get a good night’s sleep.
Whilst you may be able to stay with your child, you still need to factor in washing and changing. Check what facilities there are for parents at the hospital. Is accommodation available? If so, what is the cost and how do you book? Often accommodation is limited so it is a good idea to look into this as early as possible.
Check with work what you need to do to take time off to be with your child. If your child will be staying in hospital or recovering for longer than a few weeks you may need to look at what provisions are in place at work to support you through this.
Balancing home and work life can be tricky when your child needs medical care. Organisations such as Contact A Family and Working Families can offer information and support to working parents.
If you are not currently working and claiming benefits you may need to speak to a benefits advisor about this if you are not going to be able to attend appointments. You could also ask for information and guidance at Citizens Advice.
Looking after your needs is important. You may find it helps to talk with family, friends and hospital staff, take regular breaks and ask for support or information.
You might want another trusted adult there to support you and your child. Sometimes this can be difficult if you have had to travel far away from home. Think in advance about how you will speak to friends and family while you are away.
Take a look at our guide to looking after yourself if you have a child with visible difference.
Check what sort of after care, if any, your child will need.
It’s important to know the answer to these questions so you can make practical arrangements with school and work, and buy or order any medication, equipment or anything else you need to help with your child’s recovery.
When your child returns home from treatment you may feel a range of feelings. This can include:
These feelings won’t last forever. As your child settles down, things will start to return to normal.
But these feelings can be hard to deal with and you may like to talk them through with someone. Speak to people who you trust and try not to bottle up feelings. It might be helpful to speak to friends or family-members outside your household.
When you are preparing for your child’s hospital stay, it may be helpful to speak to other parents for advice on managing hospital stays. Ask your medical team if this is possible as they may be able to put you in touch. You can also contact us here at Changing Faces if you need further advice.
Advice on exploring treatment options, having conversations about treatment with your child and tips on how you can support your child’s recovery.
We look at the importance of parental mental health if you are raising a child with a visible difference and point you to helpful resources.