Talking With Your Child About Cancer
"
Should I tell my child about the cancer
at all? "
Learning that your child has cancer is perhaps
the hardest news you ever have had to face. As a parent, you must
now decide how to tell your child.
The questions that many parents ask are: "What should my
child be told?" "Who should tell my child?" and
"When should my child be told?" This booklet was written
to help you answer these questions.
------------------------------
You probably already are asking, "Should I tell my child
about the cancer at all?" In the past, children were often
shielded from the diagnosis. But, studies show that most children
know they have a serious illness despite attempts of parents and
health care workers to protect them.
Most likely, your child already suspects that something is wrong.
He or she may not feel well, is seeing the doctor more often,
and has had some uncomfortable and frightening tests. Your child
also may sense the anxiety and fears of family members and close
friends.
Children who are not told about their illness often depend on
their imagination and fears to explain their symptoms. Many children
with cancer believe their illness is punishment for something
they have done; as a result, they may feel unnecessary anxiety
and guilt. Health professionals generally agree that telling children
the truth about their illness decreases stress and guilt. Knowing
the truth also increases a child's cooperation with treatment.
In addition, talking about cancer often helps bring the family
closer together and makes dealing with illness a little easier
for everyone.
------------------------------
Who should tell my child?
The answer to this question is personal. It depends on the relationship
you have with your child and on your own feelings and attitudes.
You may want to tell your child yourself, or you may want your
child's doctor to help explain the illness. Either way, you or
someone close to your child should offer support, encouragement,
and love.
If you choose to tell your child yourself, talking to others
might help you decide what to say. Health professionals such as
your child's doctor, nurse, or social worker can offer ideas.
Talk with parents of other children with cancer. Contact members
of support groups such as the Candlelighters Childhood Cancer
Foundation for advice.* Thinking about what you want to say, talking
it over with other concerned adults, and rehearsing it with someone
close to you will help you feel more at ease.
* To find the Candlelighters chapter nearest you, contact the
Candlelighters Childhood Cancer Foundation, 7910 Woodmont Avenue,
Suite 460, Bethesda, MD 20814, or call (800) 366-2223 or (301)
657-8401.
------------------------------
When should my child be told?
Because you are the best judge of your child's personality and
moods, you are probably the best person to decide when your child
should be told about the illness. There is no "right"
moment to tell a child he or she has cancer. Try to choose a quiet
time and place where you and your child can be alone. This will
create a calm and supportive atmosphere. It is probably best to
talk with your child soon after diagnosis. Waiting days or weeks
gives children more time to use their imagination and develop
fears that may be hard to get rid of later.
What should my child be told?
Before you speak with your child, you need to understand the
type of cancer he or she has and the treatment that will be given.
This way, you will be prepared for questions. Your child will
feel more secure if you can provide the correct information.
The amount of information and the way it should be told depend
on the child's age and intellectual maturity. As a rule, a gentle,
open, and honest approach is best. The following describes general
stages in child development and what children are likely to understand
about a serious illness at different ages. Please keep in mind
that these are only general guidelines. Your child may fit into
more than one or none of these categories.
------------------------------
Newborn to 2-Year-Olds
Children this young can't understand an illness such as cancer.
They can't see it or touch it. They are more concerned with what's
happening to them. Separation from their parents is a major worry.
Children more than a year old are concerned with how things feel
and how to control things around them. Very young children are
most afraid of medical procedures and tests. Many cry, run away,
or squirm to try to control what's happening.
After 18 months, children begin to think about what is going
on around them. That's why an honest approach is best. Be truthful
about trips to the hospital and procedures that may hurt. You
can tell your child that needle-sticks will hurt for a minute
and that it is okay to cry. This lets your child know that you
understand and accept his or her feelings. Your honesty also helps
build trust.
Being able to make choices, as long as they do not interfere
with treatment or harm health, can increase your child's confidence
and sense of control. For example, if a medicine is taken by mouth,
your child could choose to have it mixed in apple juice, grape
juice, or applesauce.
------------------------------
2- to 7-Year-Olds
Children ages 2 to 7 are better able to understand illness.
They tend to look at things from one point of view-their own-and
believe that the world revolves around them. They link events
to one thing. For example, they usually tie illness to a specific
event such as staying in bed or eating jello or popsicles. Children
at this age often think their illness is caused by a specific
action. Therefore, getting better will happen automatically if
they follow a set of rules.
Younger children, in particular, need to be reassured often
that they did nothing to cause their illness and that their cancer
treatment is not punishment for something they have done, said,
or thought. Children in this age group also need to have medical
procedures explained honestly and realistically. It helps to remind
children that all of the tests and treatments are done to help
them feel better.
Simple explanations about cancer are also important. Stories
that relate cancer to familiar ideas will help in explaining the
diagnosis. These comparisons may be tailored to the child's specific
cancer type. The 2- to 7-year-old, for example, understands good
and bad. Try explaining cancer and treatments in terms of a battle
between "good guy cells" and "bad guy cells."
Taking medicine will help the good guys become stronger so they
can beat the bad guys.
------------------------------
7- to 12-Year-Olds
Children ages 7 to 12 years are still limited by their own experiences
but are starting to understand relationships among several events.
Thus, they see their illness as a set of symptoms. They are less
likely to believe that their illness resulted from something they
did. They understand that getting better comes from taking medicines
and doing what the doctor says. Children at this age are able
to cooperate with treatment.
An explanation of cancer to this child can be more detailed
but should still include familiar situations. Comparisons also
are useful in explaining cancer to children in this age group.
You might say that there are different kinds of cells in the body,
and these cells have different jobs to perform. Like people, these
cells must work together to get their jobs done. Cancer cells
can be described as "troublemakers," that disrupt the
work of the good cells. Treatment helps to get rid of the "troublemakers"
so the other cells can work together once again.
Although the understanding of death varies among 7- to 12-year
olds, many children in this age group think or worry about dying.
However, they often are afraid to say anything to you. Be open
and honest with your child. Tell your child that you, the doctors,
nurses, and others are doing everything they can to make the cancer
cells go away. Reassure your child that a lot of children with
cancer get better, but no matter what happens, you'll be there.
If you are not sure what to say, ask the doctor, nurse, social
worker, or chaplain for help.
------------------------------
12 Years and Older
Many children older than 12 years are able to understand complex
relationships between events. They are able to think about things
they have not experienced themselves. Teenagers still define illness
by specific symptoms such as tiredness, and by limits on everyday
activities, but they also understand the reasons for their symptoms.
Thus, you can explain cancer as a disease in which a few cells
in the body go "haywire." These "haywire"
cells grow more quickly than normal cells, invade other parts
of the body, and disrupt normal body functions. The goal of treatment
is to kill the "haywire" cells. Then the body can function
normally again, and the symptoms will go away.
Teenagers understand that cancer can lead to death. They need
to be reassured that much progress has been made in treating childhood
cancer. They also need to know that many children who have cancer
survive their disease and live normal, healthy lives. In fact,
the number of survivors is increasing all the time.
------------------------------
Keeping lines of communication open
Throughout treatment and followup care, you should continue
to talk openly with your child. Like many other children, your
child may, with time, ask more complex questions. Setting up patterns
of open communication early will support your child now and strengthen
your relationship for years to come.
At times, you may feel strong emotions when you are with your
child. You do not want to burden your child with your fear, anger,
or sadness. But children often are aware of how you feel. In fact,
children may hide their own feelings to protect their parents.
You may want to discuss your feelings with your child if you think
they interfere with your relationship. You can tell your child
why you are sad. This reassures your child that you are not angry
with him or her and also lets your child express feelings. Let
your child know that it is okay to cry and be sad. This gives
him or her permission to show feelings.
During treatment, it is important to remember that you, your
child, and the health care team are partners. Children who truly
feel like a member of this team are more likely to cooperate and
to accept treatment. You can help your child by explaining what
will happen and allowing him or her to make simple, safe decisions
about care.
Questions your child may ask
Children often are curious and may have many questions about
their illness and treatment. Your child knows and trusts you and
will expect you to respond to questions. Some children will ask
questions right away, while others will ask them later. Here are
some ideas to help you answer some of the questions your child
is likely to ask.
------------------------------
"Why Me?"
Children, like adults, wonder why they have cancer. They may
feel strongly that their cancer was caused by something they did.
A child with cancer should be told honestly that no one-not even
the experts-knows why a person develops cancer. Children need
to be reassured that nothing they did, or didn't do, caused their
disease. Children also need to know that their illness is not
contagious-they did not "catch" cancer from someone
else.
------------------------------
"Will I Get Well?"
Often, children know about family members or friends who have
died from cancer. As a result, many children are afraid to ask
if they will get well; they fear the answer will be "no."
You should tell your child that cancer is a serious disease but
that the medicine, x-rays, and/or operation will help to get rid
of the cancer. You should also tell your child that the doctors,
nurses, and family are trying their best to cure the cancer. By
using this approach, you are giving your child an honest, hopeful
answer. Knowing there are caring people such as doctors, nurses,
counselors, and others also may help your child feel more secure.
------------------------------
"What Will Happen to Me?"
When children are first diagnosed with cancer, many new and
frightening things happen to them. While at the doctor's office,
clinic, or hospital, they may see other children with cancer who
are not feeling well, are bald, or have had amputations. A child
may be too afraid to ask questions and may develop unrealistic
fears about what will happen. For this reason, children should
be told in advance about their treatment and possible side effects.
They should know what will be done to help if side effects occur.
Children also should know that there are many types of cancer
and that what happens to another child will not necessarily happen
to them, even if they have the same type of cancer or the same
type of treatment.
Children should know about their treatment schedule. They also
should be told about any changes in their schedule or in the type
of treatment they receive. Having your child keep a calendar that
shows the days for doctor's visits, treatments, or special tests
will help prepare for these visits.
------------------------------
"Why Must I Take Medicines When I Feel Okay?"
Most of us link taking medicine to feeling sick. It's confusing
to children to take medicines when they feel well. Answers to
this question may relate back to the original explanation of the
cancer. For example, children could be told that even though they
are feeling well and have no signs of disease, the "bad-guy
cells" are hiding. They must take the medicine for a while
longer to help find the bad guys and stop them from coming back.
------------------------------
"What Should I Tell the Kids at School?"
Children with cancer are concerned about how their friends and
schoolmates will react. This is especially true when they have
missed a lot of school or return with obvious physical changes
such as weight loss, weight gain, or hair loss. Encourage your
child to keep in touch with close friends and classmates. Friends
often want to know what happens when a child is away from school.
Encourage your child to talk honestly about the disease and the
kind of treatment being given. Suggest that your child reassure
friends that they cannot "catch" cancer from anyone.
You or one of the teachers at school also may be able to talk
to other students.
Try to help your child understand that not all people, including
some adults, know about cancer. People who don't understand cancer
often act differently or may give your child incorrect information.
Such talks with others may cause your child to have doubts and
fears despite all your reassurance. Ask your child about conversations
with others so that you can correct any misunderstandings.
You may want to ask your child's doctor, nurse, or social worker
about a school conference, classroom presentations, or a school
assembly that includes a question and answer session to help other
students better understand cancer and what is happening to your
child. Your child's teachers or the school counselor can help.
Your child will learn two important lessons about how people
react to illness. First, some people, no matter what they are
told, may act different because they do not know much about cancer.
Second, good friends will remain friends. They know your child
is still the same friend as before.
------------------------------
Will I Be Able To Do the Things I Did Before I Got Cancer?
The answer to this question is individual and depends on the
child's type of cancer and treatment. Most likely, your child
will need some restrictions at different times during treatment.
Tell your child why the doctors or nurses think it's best to restrict
certain activities and how long this will last. Help your child
substitute one kind of activity for another. For example, you
could suggest that friends come over to paint, have a snack, or
play video games if the doctor feels that your child should not
ride a bike because the chance of injury is high.
------------------------------
Supporting your child
Like adults, children with cancer feel uncertain, anxious, and
afraid at times. But, unlike many adults, children often are not
able to talk about their fears. Instead, they may express their
feelings by being unpleasant, boisterous, or bossy, or by being
quieter than usual. As a parent, you know how your child usually
behaves, so you will probably be the first to notice any differences.
Play is a way for a child to express and reduce fears and anxieties,
and you should encourage it. Drawing pictures and playing with
puppets, dolls, and even medical supplies are ways children may
show that they don't understand what is happening or that they
need more reassurance and love.
Some children find it hard to express their feelings. These
children may have nightmares or eating or behavioral difficulties.
They also may not do as well in school. Some children resume behaviors
that they had outgrown, such as bedwetting or thumbsucking. You
should talk about these things with your child's doctor, nurse,
social worker, or school counselor.
Remember that through the years, you as a parent already have
developed a "sixth sense" about your child. You do not
need to look for problems in the way your child behaves. If problems
exist, they will be obvious to you. Also, remember that your child's
doctor, nurse, social worker, teachers, and school counselor have
had experience with situations like yours and are willing to help.
------------------------------
Here are ideas for reassuring your child during the cancer diagnosis
and treatment:
*Remind your child that the cancer is not caused by anything
he or she did.
*Neither the disease nor the treatment is punishment.
*Be honest and realistic in your explanations of procedures
and treatments.
*Let your child know about any changes in treatment.
------------------------------
Nobody-not even your child-expects you to know everything. Don't
be afraid to say "I don't know." If your child has questions
that you cannot answer, tell him or her that you'll try to find
the answers.
Don't be afraid to ask your child questions. Asking children
what they are thinking and feeling does not create new fears;
it gives them the chance to express the fears they already have.
Tell your child that it is okay to feel sad and cry. This provides
an outlet for emotions.
Set limits. During this period, your child may challenge the
rules you've set. It's natural to let ill children "bend
the rules," but this actually may make them more anxious.
They may imagine that things are worse than they really are.
Let your child have some control as long as it does not harm
his or her health or interfere with treatment. This allows your
child to grow in spite of the needed restrictions.
------------------------------
Encourage activities to reduce anxiety. Drawing, playing with
medical supplies or puppets, and role-playing may help your child
express feelings. Therapeutic play with a social worker or psychologist
can help young children better understand and adjust to their
illness.
Encourage your child to talk about his or her feelings. Frequent
family talks can help reduce anxiety. Talking helps the whole
family cope with this illness together.
Recognize that children, like adults, have good days and bad
days.
Remember that the health care team is there to answer questions
and give support to you and your family.
Children, especially those younger than age 5, worry about being
separated from their parents. Reassure your child that even though
you have to leave, you love him or her and will return as soon
as you can.
Help your child keep in touch with friends, family members,
and schoolmates while away from school. This tells your child
that he or she is still a normal kid with friends, interests,
and responsibilities.
Encourage your child to do homework and to go back to school
as soon as possible. If your child is unable to attend school,
even for a short amount of time, you may be able to request a
tutor or a teacher to come to your home. Encouraging your child
to keep up with schoolwork, even at home, will send a positive
message.
------------------------------
Despite all that is going on, your child is the same person
as before, with the same emotional needs as any other growing
child. Take some time each day to love and enjoy each other as
much as you can.
Talking with a child about cancer is not easy. We hope this
information has given you some helpful ideas. You also can use
these ideas when talking with your child's brothers, sisters,
and friends.
Source: National Cancer Institute - June 2000
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