As recently as the 1980s, it was customary to withhold news that a family member had cancer to children. The theory: It would be too upsetting for children to know a parent, grandparent or other loved one was seriously ill.
Decades of research in child development and child psychology have led to recommendations that children and teenagers benefit greatly from timely, age-appropriate education about the illnesses and treatments of their loved ones. As a result, numerous books, websites and health care professionals are helping families educate and support children when a loved one is diagnosed with mesothelioma.
Most people nowadays acknowledge children need to know when a parent or loved one has the disease. However, some adults worry about when and how to discuss it because they fear their choice of words or timing may scare or upset the child. Many adults also fear questions the child may ask like: “Will grandpa die of cancer?”
While these types of conversations may be difficult, it is reassuring to know that proactively talking to children allows them to cope more effectively with a medical crisis like mesothelioma. Sitting down with a child and letting them know what is going on sends them the message that no matter what happens in the family, they will be told the truth.
An ideal time to tell children about cancer is when it will begin to affect them or when they will see something different. It is helpful to wait until there is a treatment plan for a loved one to tell children what is happening. At that point, there is usually a clear understanding of where the mesothelioma is located in the body.
But if the child lives with the mesothelioma patient or notices the patient is sick and often going to the doctor, then someone should discuss their loved one’s condition and meaning behind the doctor visits, even if there is no treatment plan in place.
Recommendations by Age
Children process information differently at specific age groups or ranges. For example:
- Children under age 2 cannot understand the concept of cancer and are best supported by keeping their daily routine as normal as possible. If the person with cancer is child’s parent or primary caregiver, try to allow the young child to spend as much time as they normally would with that caregiver to ensure healthy attachment.
- Children between ages 2-7 may be capable of understanding concepts like “good cells” and “bad cells” in the body. Often, children of these ages think their misbehavior or their germs caused the cancer, so reassure them cancer is not contagious and that they didn’t cause the illness. When explaining cancer treatment, think of the visual cues, including hair loss, exhaustion and treatment visits, and explain it from the child’s perspective.
- Children in the pre-adolescent phase (ages 8-12) are better able to understand the causes and effects of serious illnesses, but mesothelioma and its treatment needs explanation in simple terms. They may have many questions about cancer and its consequences. Answer questions as honestly as possible. It is okay to say “I don’t know” to questions about prognosis and other disease-related uncertainties.
- Children older than age 12 are capable of abstract thoughts and can understand more in-depth explanations about mesothelioma. Some children and teenagers may want to learn about the disease and will turn to the Internet for answers.
Pictures and Drawings Are Useful Tools
It’s always helpful using pictures or illustrations when describing cancer and treatments to children. Rather than trying to explain chemotherapy, many parents find it helpful showing children a photo of someone undergoing chemotherapy.
Many books and pamphlets about mesothelioma include diagrams that show the disease and how it affects the body. Cancer treatment facilities often will allow patients to show their children or grandchildren the treatment areas so children will better understand and be less fearful of their loved one’s treatment.
Younger children can be encouraged to draw pictures of their loved ones with the illness and tell a story about what they drew. Some children will draw the patient without hair or in a hospital bed. Drawing helps younger children process their thoughts and feelings.
Another useful tool to help children understand and adjust to their loved one’s diagnosis is offering them a chance to see scars, port and other physical effects of treatment, like grandma without a wig covering her bald head. Children shouldn’t be forced to look at anything they don’t want to, but offering them the opportunity helps them to feel involved, reassured and informed about their loved one’s illness and treatment.
Be Ready for Questions
Be prepared for a wide variety of reactions from the child. Questions about the cancer and their loved one will come after the conversation. It’s helpful to think back to the time you heard about your or a loved one’s diagnosis of mesothelioma, and how long it took for the information to sink in before you formulated questions.
It is also important to include feelings, thoughts and emotions in the cancer discussion with children. Of course, they need to know the facts about their loved one’s illness. But they also may be experiencing some anger and a fear of the unknown.
Children need to hear these emotions are normal and it is okay to talk about them. It is tempting to reassure children that everything will be okay and to only think positively, but that doesn’t give them permission to feel scared or any of the other emotions that are common when someone we love has mesothelioma.
There are many resources to help you talk to the children in your life about mesothelioma. In addition to books and online support site Cancercare, many cancer treatment centers have counselors or social workers who can help you find the best way to educate and support children. They also may give children a tour of the treatment center, which is usually quite helpful in helping them adjust to the situation.
Books of Interest
- “My Daddy’s Cancer: An Interactive Book for Children,” Cindy Klein Cohen.
- “What Is Cancer Anyway?: Explaining Cancer to Children of All Ages,” Karen L. Carney
- “Can I Still Kiss You?: Answering Your Children’s Questions About Cancer,” by Neil Russell
- “When a Parent Has Cancer: A Guide to Caring for Your Children,” by Wendy Schlessel Harpham, M.D.
Questions and Answers from the July Online Support Group
Q: Does physical therapy help patients experiencing fatigue from chemotherapy?
A: Physical therapy may help certain patients experiencing fatigue from chemotherapy. Ask your oncologist if you’re an ideal candidate. Patients with extreme fatigue, low red or white blood cell count or lack of muscle coordination should not exercise or do physical therapy while going through chemotherapy. People on doxorubicin (Adriamycin) should not exercise the day of treatment, but can return to gentle exercise 48 hours after administration.
Q: What is the purpose of a pleurodesis? How does it help pleural effusion?
A: The purpose of a pleurodesis is to fuse together the two layers of the lung lining. Pleural effusion is a liquid that builds up between the layers and causes pain and breathing difficulties. A pleurodesis eliminates the space between the layers, making it impossible for fluid to build up once the layers are fused together. If a person as recurring pleural effusions, a pleurodesis may be recommended to permanently resolve the condition.
Q: What’s an easy way to describe mesothelioma to people who don’t know what it is or where the mesothelium is located?
A: You can simply say that “mesothelioma is a cancer of the lining of the lungs or abdomen.” It can affect other organ linings, but the lining of the lungs and abdomen are the most common.