Parents & families

Feel as though you are facing emotions with your child's diagnosis? 

Read on for some practical advice about recognising and managing your emotions.

Overwhelmed

It may seem as though everything is happening at once and you don’t have any control.  You may feel you will never cope and are struggling.

There is no right way to react to being told your child has a chronic illness and everyone will react differently.  How you react is unique to you –  becoming distressed or feeling scared doesn’t mean you are a not coping or a failure.  It is natural for you to be ‘ all over the place’ in these early days.

Angry

You may feel angry knowing that your child has CKD and that your life and the life of your family has changed, or may change, and not in a way that you would have wanted.

Although it is important to allow yourself to feel your emotions, managing them is also important.  Most people are able to do this but sometimes it is difficult. If you do feel yourself getting angry, especially with other people, it is often better to walk away and take some time out.  There is a parent room on the ward as well as a large restaurant and two cafes in the hospital and there are staff you can talk with to try to work through with you how to deal with any issues that are causing problems.

There is a zero tolerance policy in all our hospital departments towards aggressive behaviour. 

Frightened

You may be fearful of the now and of the future, of your child’s condition, of how they will cope with schooling, careers, life prospects, your own health needs, operations, procedures.... the list is endless. 

If you are frightened or worried about anything just tell someone.  No matter how silly you think that fear is or that question is, it is likely someone else will at some time have said or asked something very similar. If the person you ask doesn’t know the answer they will find someone who does for you.  Better to talk about it than to sit worrying!

Resentful

You may feel resentful about having all this in your life, about having to split your time between other children and your child who needs more attention.  You may resent having time off work as this may hamper your career or affect your finances.

Feeling you have lost control and are unable to help your child

The majority of parents want the best for their children and naturally want to make things better for them when they go wrong . From an early age children look to parents for then to ‘make it better’ but when your child is faced with long term illness you can’t make them better and this can be very distressing.

I'm used to making it better for him and I can’t and it’s rubbish.

You want to pretend this isn’t happening

You can’t believe this has happened to your child and your family. You don’t want to believe it and want it all to go away – but at the same time you have to deal with treatment plans, medication and procedures

I was ok for a while then I just withdrew and thought maybe they’ve got it all wrong and she’s not ill.

Loss and Change

When we lose something or someone, we usually go through a period of grieving. Receiving a diagnosis of long term illness can leave family members having similar feelings because they can feel they have lost their ‘well child’ and their existing life and  have to adjust to something different.

I had a plan of things she would do and now I don’t know if he will be able to do any of those things.

Having CKD doesn’t mean your child won’t be able to do all the things you thought they would.  Although some things may be more difficult, many children grow up to lead successful, fulfilled lives.

The team are here to support your child to be the very best they can be and to achieve everything that is possible for them in their future life

Your child’s illness will affect the whole family and getting through is about all family members learning and finding new ways to live with a new sort of life

Coming soon: Parents/carers/friends have told us about the way they felt in those early days and beyond

Coming soon: Parents/Carers/friends have also told us of some of the things that helped them and tips they would like to pass on to others

Talking with your child and their siblings

It may feel daunting to talk with your child or their siblings about having a serious illness but talking with them is important.

Why talk?

They may have read information ,on the internet, or been told information from their friends both of which could be unhelpful or wrong, by talking with your child you can give them correct information and reassure them.

You can encourage your child to talk openly and honestly and respond in the same way – this will help them in communicating with the team and when talking with others such as other family members, friends and teachers.

You can explain what needs to happen during treatment and why and this will help your child to understand the need for procedures.

Talking with your child and allowing them to talk freely to you will help them come to terms with their, or their siblings, condition and help them adjust to change.

When to talk?

If your child begins to ask questions – they may give you cues about wanting to know information.

Once a week give your child special time (not at bed time) when you give them your undivided attention, no mobiles, no games, no tv, when they can talk about anything including their kidney condition. It doesn’t need to be too long say 15/20 minutes. This will reassure your child that no matter what they will have that time with you and be able to express thoughts and feelings and these  are important to you.

What to talk about?

What is going well and what is your child struggling with.

What needs to be done to keep well including diet, medication, procedures/tests.

What you both might need to find out - make a list.

Tell your child that it is ok to feel sad, angry, confused or resentful.

How to talk?

Be honest and talk at a level your child can understand.

Be mindful of the language you use and how much information you give – better to give small chunks of information each time than overload your child with lengthy explanations and detail.

Encourage your child to talk about their feelings and worries -remember, your child will learn from you how to talk with others about having a long term illness.

Use age appropriate books to explain how the body works.

Younger children may find hospital play or art work helps them express themselves.

If you don’t know the answer to a question don’t ignore or dismiss it – give reassurance that you will find out and ask a member of the team for information. If your child doesn’t feel able to talk with you directly they could write a note or e mail to you or leave a worry in a special box or folder for you to read. 

If your child doesn’t feel able to talk with you directly you could them to  write a note or e mail  you or leave a worry in a special box or folder for you to read.

Childline – 0800 1111 -  will provide free confidential counselling child by trained telephone counsellors to children and young people up to 19 – your child can ring just once or often and doesn’t have to give their real name or contact details if they don’t want to.