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Children: Why To Tell About Your Condition And How To Tell

General Guidelines For Telling All Underage Children About Your Health Condition

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The guiding principle for telling children about your health condition should be to tell the truth in such a way that the child is able to understand and prepare for the changes that will happen in the family.  Children can sense when they are being told the truth or not.

Keep in mind that communicating with young people about an adult's illness is not a one-time event. It is a process that will continue over time. Expect that the discussion will be ongoing as things change.

  • There is no need to tell a child everything at once.
  • Start with information the child needs now. Plan to tell more as the weeks progress.
  • Do not go beyond a child's attention span.

When telling a child about your condition, it may help to think about it just as you have about any other health condition you had in the past.

In addition:

  • Make notes about the key points you want to say
  • Choose the timing and setting for the discussion.
    • Look for a time when the child is calm and isn't tired or hungry.
    • Choose a quiet setting without other people nearby or other distractions.
    • For children who are in school, a weekend is a good time becuase it givce the child time to process the news before going back to school
  • Consider starting the conversation with a statement which prepares the listender for the gravity of the conversation. For instance, "I have some important news to tell you...."
  • Let the child know that you are sick. 
    • Tell the name of the illness (in simple terms). If you have cancer, use the word.
    • Present information truthfully, but as reassuringly as possible. For example, tell them that the doctors are working to make you better.
    • If you need to be hospitalized, reassure them that you will be back.
  • Tell children about your treatment.
    • Show and tell may be appropriate. Consider using the internet, videos, dolls and/or drawings. 
    • Use clear and simple words that they can understand. 
    • Let them know about potential side effects so they will not be worried if any occur. If the side effects do occur, remind them that they relate to the drugs you take that are helping to heal you.
  • It is critical to let children know:
    • That they are in no way responsible for your illness. 
    • That your illness is not contagious. Because you are sick does not mean that they will get sick. They will not "catch" your illness.
  • Anticipate the concerns your children will have about the impact your illness will have on them. It is natural if a child seems more concerned about him or her self at first than about you.
  • Let children know how your illness and/or treatment will affect their routine.
    • Let them know that they will alway be taken care of no matter what happens. Their daily needs and activities will still be addressed. They will still get their favorite sandwich and get to Little League etc.
  • Address any fears children may have about separation and who will take care of them. Reassure each child that he or she will be safe, secure, and loved.
  • Encourage your children, whatever their age, to talk about their feelings. Let them know it is okay to be upset, angry, or scared. 
  • Also encourage your children to ask all the questions they may have. 
    • Let them know that you will answer as honestly as you can. This helps keep an open dialogue. If children are not told the truth about an illness, they can become even more scared. They often depend on their imagination and fears to explain the changes around them.
    • When you respond to your children, the answers can vary depending upon the age of the child. Don't provide more information than the child is ready to hear. One approach to consider is to answer questions briefly and wait to see if your child asks more questions.
    • When talking about your health condition, use a hopeful tone. Try not to use a tone that is overly optimistic or pessimistic.
    • Prepare answers for the difficult questions. For instance, prepare answers to questions such as "Is this going to happen to me?" or "Are you going to die?"  When thinking about an answer to the last question, it is helpful to reassure a child that you are going to do everything you can to live. It is also okay to say  something like: "I don't know." Particularly if you add something positive such as: "The doctors and I are doing to our best to keep that from happening." 
    • It may be helpful to read a book together. Ask a children's librarian for guidance, or look for books or brochures on your own such as books for children facing loss by the Centering Corporation (www.centering.org offsite link
  • If you could die in the foreseeable future, talk about death if it is appropriate for the child. It is advisable not to use code words such as "I am going to sleep forever." If a child equates death with sleep, he or she will be afraid to go to sleep.
  • Do not promise that you will not die. Such a statement takes away the child's chance to come to terms with the possibility of your death. 
  • Be on the lookout for any feelings of guilt or wrongdoing. Try to deal with them immediately.
  • Expect that your children will repeat whatever you tell him or her to other people - and not necessarily correctly.
  • Ask children for their support. Think about ways they can be helpful in an age appropriate manner.
  • Arrange for children to talk with other adults. It may be easier for children to share their emotions and ask questions of other adults.
  • Warn children about all the information that is out there which (a) may not be accurate and (b) probably does not apply to you and your situation. Suggest that children ask you about whatever information they hear or learn about on the internet or elsewhere.
  • Coordinate what to tell the children and the words to use in describing the condition with your spouse or significant other, caregivers and other people in your household who will come into contact with the children. This kind of coordination keeps the children from being confused.

Do not involve children in treatment decisions. The complexities are likely beyond their development level. They may also unnecessarily focus on the "what ifs."

If you go to treatments, consider taking the child with you to take away the mystery. For example, when Sarah told her 5 year old daughter Melissa about her need for radiation treatments, Melissa asked if that meant that there was going to be some kind of box that she would be put in without any light and thunder sounds. Sarah took Melissa with her to a radiation treatment so Melissa could see the machine for herself, the people who administered the treatment, and how non-threatening it all was. The technicians explained to Melissa how the machine worked. It took the fear away. As Sarah said in recounting the situation: "I told my children everything I could. I let them lead me to what they wanted to know about."

If you will be away from home for a while, reassure the child that he or she will not be abandoned. Instead, he or she will be well taken care of and routine will be followed as closely as possible.

As time goes on, children will require updates tailored to their own changing understanding and emotional needs.

The other sections of this article describe guidelines for different age groups. As a general matter, keep in mind:

  • The age of each child.
  • What he or she may or may not be able to understand.
  • The personality and maturity of the child.
  • The manner in which the child typically tends to deal with things.

How much to tell very young children

Try not to tell a child more information than the child is ready to hear. It may be enough to indicate that you are sick and will need to take medicine, be hospitalized, or require other treatment.  

How much to tell older children

Older children will likely need more detailed information about your illness and its implications. They may also be more likely to equate a serious illness with dying and thus should be told about any treatment possibilities and potential outcomes. In some cases, your prognosis may be good, but your child may be concerned that you are likely to die because they know of relatives that have died from your general diagnosis or have heard news reports that your diagnosis is often fatal. If this is the case, it can help your children to know some of the specifics that make your situation different and your prognosis more favorable. For example, you may be younger, in better overall health, have a different type of specific illness, and may be receiving more advanced treatment than a relative who died some years ago. (When thinking about your prognosis, keep in mind that if it isn't what you hope, that a prognosis is based on statistics and does not predict what will happen to any particular individual.) 

Drugs

  • Let your children know that any drugs you take are to help you, but could be harmful to them. Warn them against taking your pills (or any of your pills for that matter). Preferably keep your drugs out of reach of underage children (and possibly locked away from older children.)
  • Dispose of unused drugs safely.
  • To learn more about drugs, how to store them safely and how to dispose of them safely, see the articles in "To Learn More."

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