It is difficult for parents to hear the news that their child has an illness that may affect the rest of their life, but even more difficult is sharing this news with the child. It is natural for parents to feel that they are protecting their child by not discussing the illness; however, more damage is often done when communication is hindered.

Tips to remember when talking about the illness:

• Gather as much information as possible about the illness and treatment. If it is difficult to understand, ask the physician for clarification. Being well informed helps to explain the illness more accurately and appropriately to the child. Use appropriate terms when explaining the illness and treatment. These new terms will become part of the child’s vocabulary.

• Talk directly with the child about his illness. If your child has a chronic or terminal illness, it is important to talk about it openly. The child may experience disagreeable symptoms, have frequent trips to the doctor and/or hospital, and overhear conversations between parents, doctors, relatives, and friends, and begin to notice a change in how other people relate to them. Feelings of insecurity and fear begin to develop when children sense that they are the focus of many secrets. Their imagination begins to create images that are often much more terrifying than reality.

• Be honest. Children need to know they can trust what their parents and doctors are telling them. If they discover that the people they trusted have been dishonest, this creates a great deal of insecurity during an already difficult time. For example, don’t tell the child that a certain procedure won’t hurt when you know that it will. In addition, don’t tell the siblings that you are taking their brother or sister to visit grandma and grandpa when you are really taking him/her to the hospital.

• Encourage the child to ask questions. When parents are willing to listen, the child feels more free and comfortable to discuss their illness. Don’t hesitate to admit that you don’t know all the answers. If it is something that can be researched, allow the child to help. This helps them feel more confident and independent.

• Always explain the procedures prior to them occurring. Painful surprises usually cause more insecurity. Stay with the child during the procedure if possible. If not, allow them to take something for them to hold on to for security such as a blanket, stuffed animal, etc.

• Take advantage of resources. Use children’s encyclopedias, anatomy books, computer programs, etc. to show children what is happening in their body when they get sick (such as having an asthma attack, seizure, allergic reaction). This can help them understand what the doctors are telling them. Analogies can also be helpful when describing an illness or treatment to a child.

• Encourage support from the child’s siblings and friends. It is best if the child can tell others about their illness. Parents can help fill in the gaps once they see how others respond. Siblings and friends can be great advocates for the child.

• Inform relatives, caregivers, and teachers about the child’s illness. This helps avoid false rumors and opportunities for the child to hear inconsistent information. Keep conversations positive. Don’t discuss problems that will further burden the child or make them feel guilty, such as financial concerns, family stress, etc.

• Establish rapport with your child's physician, and encourage open communication. Let the doctor know that you want her to be open with you and your child. If she is too busy to answer your questions, and you are unable to establish a comfortable rapport, find another doctor. Support groups can be a good resource for referrals.

No parent can truly prepare himself or herself for the journey they will face if their child is diagnosed with a life threatening illness.  However, open honest, communication can help both the parent and the child tackle the tough road ahead.  Providing honest, age appropriate information helps build a safe foundation as children face both common and serious illnesses.