Talking to a child about a life-limiting illness

Reassuring a child

Involving others

On the whole, children can be very resilient, but if they are not themselves or are having difficulty adapting to changing circumstances, do talk to them. Encourage them to share what is worrying them, listen to their concerns and answer their questions as directly as you can.

It is really important that the information children receive is consistent from all the adults that are involved in their lives. It can be very confusing if they receive conflicting messages from different people. You might want to let close friends and family know what you have said. For school-age children you might also want to involve teachers and school nurses. In this way they can raise any concerns quickly, and provide any additional support that might help them.

Above all, give them plenty of reassurance. It is natural for them to worry about how their lives will be affected. Let them know that even though the person they love is ill, they still love them and that they will be cared for.

How can Trinity help?

How to contact Trinity Royal Trinity Hospice 30 Clapham Common North Side London SW4 0RN Call: 020 7787 1000 Email: enquiries@royaltrinityhospice.london www.royaltrinityhospice.london @trinityhospice RoyalTrinityHospice @royaltrinityhospice

Some families may prefer to deal with things themselves and are happy and confident supporting one another. But there may be times where you or a child might need some extra support, advice, or counselling.

At Trinity, we understand the impact illness can have on a family. Our Patient and Family Support Team has experience of helping families at times of stress and is here to help you and your child cope.

“Trinity offers a wonderful support network for patients and their families�

Talking to a t u o b a d l i h c a life-limiting illness

The team will work with interpreters to ensure that every patient and their loved ones can access the support they need, regardless of their language and/or communication needs.

Royal Trinity Hospice will always store your personal details securely. For full details see our privacy policy: www.royaltrinityhospice.london/privacy

Charity no. 1013945 Date of publication September 2018

Information for patients and families

This leaflet provides some help and advice on how to talk to a child when someone they love has been diagnosed with a life-limiting illness.

Talking to a child – why it is important Finding out that you or someone close to you has a life-limiting illness can be hard, but having to tell a child about it can feel just as daunting.

The first thing to realise is that it is very important that a child is told. While it is natural to want to protect them from bad news, they will intuitively know when something is not right. If you keep the news from them or misrepresent what is happening, they may become anxious, confused or frightened.

Talking to a child about life-limiting illness is hard, but allowing them time to express how they feel and ask questions can be hugely beneficial and can bring you closer together.

How to tell a child It is best to use simple, straightforward language that children can understand. It is also important to choose the right time and place to talk, so set aside a time when you are unlikely to be interrupted.

If you have children of different ages it might be better to speak with them separately as the level of conversation you have with a child about a life-limiting diagnosis will depend, in part, on how old the child is (see opposite).

An initial conversation is a good starting point for further chats. You can talk about what has happened, and why, and what is likely to happen next - but don’t feel you need to cover everything in one go.

What to tell a child - explaining illness Try to explain the illness in simple terms, using age-appropriate language. Don’t use difficult medical terms that might be confusing, be honest and keep information specific to the situation.

You might want to start by finding out what they already know about the illness and use this as a way of correcting any misunderstandings they might have. Try not to play down the seriousness of the illness but to answer any questions they might have honestly. If you don’t know the answer, it is fine to say so.

A child’s understanding Generally, a child’s understanding of illness and death will depend on how old they are and their stage of development. How a child reacts and deals with the situation will depend on things like their relationship to the person who is ill, their age and their personality.

Below is a general guide of how children may understand illness at different ages: 0 to 3 years old • At this age, children don’t really grasp what is happening but they will be aware of the changes to their daily routine and to their main care giver.

• Very young children can sense distress in others and will react to unfamiliar environments and faces.

This can disrupt their eating/sleeping patterns.

• They are much better at verbally expressing how they feel than younger children. However, they might also show their emotions through physical symptoms, for example a headache, stomach ache or even copying some of the symptoms of the person who is ill.

• Some children might find it difficult to sleep and may lose their appetite.

9 to 12 years old • At this age a child will want more specific details of the illness and the treatment. They are able to understand the emotions of others as well as express their own feelings, although they may still show how they feel through physical symptoms.

• They might turn to their friends for support.

3 to 5 years old • A child of this age doesn’t understand illness fully.

They might think they can catch the illness themselves or even believe that they can make it go away. They might think that if they get ill they won’t get better and become fearful of doctors and hospitals.

• They might try to be very good, setting high standards for themselves or stepping into an adult role to be helpful.

• They may become clingy or struggle when they are separated from people they know well, especially if their routine changes.

• Teenagers are at a stage when they are trying to find their own identity and will want to understand how their own lives might be affected.

Before you talk, it’s best to be clear about how much you want them to know and what you feel ready to tell them.

• It is common for a child of this age to revert to behaviour they have outgrown. This could include wetting the bed, talking like a baby, or having tantrums.

Every family is different so you will need to judge whether you want to talk to a child alone of have someone else with you for support.

5 to 9 years old • Children of this age are likely to ask lots of questions as they are capable of understanding details of illness. They will want straightforward answers to the questions they ask.

Teenagers • Teenagers usually understand illness fully, but might be reluctant to talk about their feelings.

• Some teenagers will cope with sadness and anxiety by being angry and hostile or refusing to open up.

• Even if a teenager prefers to be alone or doesn’t want to share their feelings, do let them know that you are there for them if they need to ask anything.