Talking to a child about a life-limiting illness
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.
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.
Every family is different so you will need to judge whether you want to talk to a child alone or have someone else with you for support.
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 conservation 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.
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 may become clingy or struggle when they are separated from people they know well, especially if their routine changes.
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.
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.
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
They might try to be very good, setting high standards for themselves or stepping into an adult role to be helpful.
Teenagers
Teenagers usually understand illness fully, but might be reluctant to talk about their feelings.
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.
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.
Reassuring a child
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.
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
Involving others
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.
How can Trinity help?
Some families may prefer to deal with things themselves and feel confident supporting one another. But there may be times when you or your child might need some extra support and the staff at Royal Trinity Hospice are here to help
At Trinity, we understand the impact illness can have on a family. Our Patient and Family Support Team has experience of supporting families at times of stress and is here to help you and your child cope Referrals can be made for assistance from our social work service and art therapy team. We can provide support and advice around difficult conversations, provide 1:1 emotional support to the child, and can liaise with community networks, such as schools, to further support the child. The team will work with interpreters to ensure that every patient and their loved ones can access the help they need, regardless of their language and/or communication needs. Trinity also hosts a number of events at the hospice that might be suitable for children. Please speak to our staff if you are interested in hearing more about our services and events.
To make a referral, please contact us at: 020 7787 1062 and ask to be referred to the Patient and Family Support Team.
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
RoyalTrinityHospice
@royaltrinityhospice
@trinityhospice
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Date of publication March 2024