A serious progressive illness causes enormous changes in a family. Children of all ages will sense the feelings of people around them. Tension, tiredness, physical and mood changes, overheard or misunderstood conversations, all tells the child that something is wrong.
Each child will have different needs depending on their age and stage of development. Look out for any behaviour which is unusual for the individual child. It is often a very difficult challenge coping with an anxious child whilst adults are anxious themselves. You know your child better than anybody and are the “expert” who can help him or her.
This will ensure that children feel involved in what is happening, can ask any questions they may have and access specialist support if needed.
This leaflet is designed to give some suggestions and is deliberately short. It gives some guidance on dealing with difficult questions and preparing your children. It is not intended to replace specialist advice.
A list of further useful reading will be found at the back of this leaflet. It may also be helpful to share this information with others involved in the care of the child. This will ensure everyone involved responds to
Fives and under
• Can begin to understand that something is wrong but may not fully comprehend.
• It may help to encourage the child to draw something for the person in hospital. They could also be given something by that person to keep with them, to remind them that their special person is thinking of them.
• Young children often feel they have magical powers and that what they wish will come true. They may, therefore, feel guilty that their special person is ill. Assure them that nothing they have done, said or thought could have caused the illness.
• Because of their limited vocabulary it can be difficult to express feelings verbally. This means that young children use other ways of expressing their feelings such as through play, drawing or behaviours.
Ages 6-11
• Many children of this age have a basic knowledge of body parts and their functions and can understand simple explanations about the illness. Checking out their understanding can be helpful to ensure they have understood the information correctly.
• Children may show their worry or concern through disturbances in eating, sleeping, schoolwork or friendships.
• School can be an important place to escape to. If teachers and friends are aware, they can have a positive role in supporting. You could ask the child if they would like you to tell anyone that their special person is unwell.
Teenagers
• Teenagers can have an especially difficult time when someone close to them is seriously ill. Their emotions are sometimes complicated. They may find it hard to talk and show how they feel and, at times, their behaviour may be difficult for everyone to deal with.
• This is a time when they may be struggling to be grown-up and they may feel that it will be seen as childish to show their emotions or to ask for help.
• It may help to reassure them that talking about their feelings and worries is a positive way of coping. If they are finding it hard to communicate and share feelings, encourage them to talk to someone whom they trust e.g. a teacher or friend.
• They will need to be given information about the illness and for adults to check what their understanding is.
• The illness may mean that they are asked to take on more responsibility. This can be a positive experience.
However, difficulties can arise if they feel over-burdened. Teenagers need to be included and consulted as adults but will continue to need guidance, support and reassurance.
Children need:
• Accurate information
• Reassurance
• To express their feelings
• To be involved
Parents or carers are generally best placed to talk to their children about what is happening and you might find yourself repeating information many times.
Accurate information
• To be told about the illness, in words that they can understand, but not in too much detail.
• Their questions to be answered, as they arise, by someone they trust.
• About the ways family, friends and professionals can help.
• Explanation that there may be physical changes such as weight loss/gain or hair loss.
• To know what has happened and that there is likely to be uncertainty about the future.
• Honesty is essential, as it creates and maintains trust.
Reassurance
• It is important to deal with practical anxieties such as: who will take me
to school? Who will come to me if I cry at night?
• They need to know what won’t change, as well as what will.
• They may worry about whether they themselves, or a surviving parent, will also become ill. They may need reassurance that they and other people they love are healthy.
• Children learn that they are allowed to comfort as well as be comforted.
• Children need to learn that life does change and that their parents will do all they can to be there and to care for them through whatever happens.
To express their feelings
• Children’s anxiety is often acted out in behaviour rather than through words.
• Parents may need help to anticipate, understand and accept altered or difficult behaviour, especially when they themselves are anxious.
• Encouraging children to express their feelings does not mean telling them how to feel.
• Many children will find it easier to express their thoughts and feelings through play.
To be involved
• If a member of the family has a serious progressive illness, children may like to help, as
memories of helping will be important later on.
• The physical environment, where the special person is being looked after, has a big impact on how easy it is to involve a child.
If recovery is not going to happen
• It is important to balance hope with reality.
• It is helpful for all the family members to face it together.
• Some parents may not want to tell their children until just before the person dies. This could result in the children feeling that they were not important enough to be told. If children can be involved throughout, it is more likely to help in the long term.
• Children often know much more than we imagine and need to be given permission to talk about it.
• Avoid jargon and use open, honest and direct communication.
• It can be helpful to think ahead and to consider some of the questions your children may ask.
• Some children may not respond immediately and resume normal activities after they have been told. They may need time to make sense of their feelings before talking to you about them.
Some questions your children may ask
• What about me?
• Am I going to be ill and die too?
• Will other people I love die?
• How do people die? Does it hurt?
• What will happen to their body?
• Is it my fault?
Some answers you can give
• There is no one “right” answer to any of these questions. Some things will depend on your philosophy on life and your beliefs.
• Perhaps the most important thing is that your children are able to talk about their concerns and questions and that their feelings are taken seriously.
• Children will want specific answers but don’t be afraid to say that you don’t know.
• Explanations and information should be given gradually and repeated as things change.
For further advice please contact St Richard’s Hospice on 01905 763963 or at
www.strichards.org.uk
The hospice can also advise on national organisations available to support.
Recommended further reading
Lifetimes - Bryan Mallonie & Robert Ingpen
Why Do Things Die? - Katie Daynes & Christine Pym
The Invisible String - Patrice Karst & Joanne Lew-Vriethoff
No Matter What - Debi Gliori
Saying Goodbye to Hare - Carol Lee & Donna Bell
When Someone has a Very Serious Illness - Marge Heegaard
As Big as it Gets (for parents) - Winston’s Wish