Coming to the hospital for the first time and receiving your child’s diagnosis can be a whirlwind; tests, meeting staff, learning about their illness and how to care for them. At the time of diagnosis and throughout treatment, you continue to want to help your child/ teen and their siblings cope. One way to help your child/ teen cope is to explain the diagnosis in a way they can understand. During this initial busy time it can often be difficult to find the words to explain all that is happening to the child or teen. It is the job of your child life specialists to work closely with you and your child to provide clear, simple, and non-threatening teachings so they are not confused. Some children look for more information than others depending on their age and personality. Despite their ages they all have one thing in common; all patients will be wondering why they have to have tests, stay at the hospital, and take medicine.
Using explanations about the diagnosis that your child/teen can understand will often prevent them from creating and imagining explanations scarier than the truth. Helping them to understand can actually help them cope better with treatment and adjust easier. New responsibilities they may have are frequently accepted with more ease once they understand the reasons behind it.
It is important to use the specific name of their disease openly with your child/teen during treatment because they will be hearing it from staff and other families at the hospital. Many younger children have never heard words such as cancer, leukemia, and tumor, so often the words do not produce fear. For older children/ teens that are familiar with those words or may even know others that have had similar sounding illnesses (example: an older relative with lung cancer who has died, etc.) or have even seen it on a television show/movie. It is important to clarify for them how each person’s body and illness is unique and point out those specific differences.
Never talking about the illness does not mean that the concern your child may feel does not exist nor does it lessen the amount of thoughts or worry surrounding it. Avoiding the subject completely, in fact, can actually make it worse. Using the appropriate words will encourage your child/teen to be comfortable asking you questions about their illness or treatment plan. Most of all this is a great opportunity to clear up common misconceptions for all of your children/teens:
- This illness did not happen because of something that you or someone did or did not do. This includes behaviors and secret thoughts (many children/teens in school learn about the dangers of smoking and sun damage, which do not apply here, while others have wished their brother/ sister would leave their house). It is not a punishment.
- It is not contagious. They might worry that they can “catch” or “give” the illness.
- Questions such as “Am I going to die?” may come up as the words and illness are explained or first heard. It is important to be honest and tell them that each person is different, feels different, and reacts differently to their illness and treatment and the doctors and nurses here are doing everything they can to make this illness go away.
Here are some basic pointers when explaining an illness based on your children’s developmental levels. Remember child life specialists are available to all families to help with this process:
Verbal Toddler: Since the vocabulary of toddlers is limited, use words your child can identify with such as “owie or “boo boo.” Verbal toddlers are just learning their body parts. If they have a tumor that is located somewhere on the body, you can point to the area or use the name of that body part. However, if their illness is in their blood, which may be too complex to understand, saying that their body is sick and they need to come to the hospital for medicine is also appropriate. It is okay to use or teach the actual words such as “cancer” and “tumor.”
Preschooler: At this age children are more familiar with their body and can start to learn about a new part and its job. Along with explaining the body part that is sick, it is appropriate to start using the names of the illness or medicine (example: cancer, leukemia, tumor, chemo).
Early School Age: Conversations about the part of the body that is sick continue with this age group. They can often more easily learn and are interested in details about how things work. Talk further about the illness that grew/formed in the part of the body and that it is not supposed to be there. Appropriate names and clarifications on misconceptions are important.
School-Age: Many children at this age are learning about cells in school and know that all parts of their body are made up of cells. You may want to explain that cancer is made up of “a group of sick cells.”
Teens: Although these patients are older and can often understand the doctor’s explanations, it is important to talk afterward about the things that were said during these discussions. As with all ages, it is important to use the correct terms for the illness.
For more information, contact the Child Life Department at (901) 595-3020.