It is important to be compassionate and understanding of your child’s emotions, yet still set appropriate expectations and limits. It is natural to be tempted to relax your family’s rules and limits because of your child’s illness. Many parents want to allow their child extra privileges because they feel sorry for what their child is going through. We encourage you to continue your normal rules and limits. Your child may be confused by extra attention and lowered expectations. Siblings may begin to resent your child with cancer and wish they were sick also, if you don’t maintain previous limits.
In order to have normal emotional and psychological development, your child needs appropriate limits. Setting limits can be challenging but the benefits are well worth it! Here are some examples of limits that can be helpful for your family:
- Keep bedtime the same at home or in the hospital.
- Have your child attend school when possible and complete homework assignments when at home.
- Expect your child to be kind to brothers and sisters and to show respect to parents and other adults.
You may also need to set new rules for your child’s new schedule for example, taking medicine and having medical procedures. It is important for your child to know that these things are essential for him/her to feel better.
Child life specialists are available to help you find ways for your child to cope and to prepare for procedures.
Let Your Child Make Choices
Throughout the course of treatment for cancer your child will be expected to comply with many difficult things such as taking medications, going through tests, or missing school to be admitted to the hospital. This decreases your child’s feelings of control over his/her life and may increase the sense of worry and stress.
Offering your child choices when there is a choice available increases your child’s sense of control and ability to cope with the requirements of treatment. Some examples of choices you can give are: “What kind of juice would you like with your pill?” “What movie do you want to watch?”, “Do you want to sit up or lie down in bed?”, etc.
It is equally important not to offer choices when your child does not actually have a choice. For example saying, “Mommy, has to leave now, okay?” when you need to leave, or “Do you want to take your medicine?” when your child does not truly have a choice can be confusing and takes away your child’s sense of control.
In addition to wanting to be lenient, parents often want to overprotect their child and keep her from situations they cannot control. If you worry too much about your child, you may deny your child valuable opportunities for growing and developing normally. Certain activities may be inappropriate for your child—it is okay to say no to these requests. However, other activities may be very appropriate and even helpful for your child. Ask your care team about appropriate activities for your child. When you know what to expect, you will be better able to treat your sick child as normally as possible.
Tips for Talking With Children of Different Ages
Try to remember your child’s age and developmental stage when you talk with him/her. The following are basic guidelines for talking with children of different ages that may be helpful.
Infants (Birth to 1 Year)
The most important developmental need for an infant is to build trust and become attached to parents. Infants need to be kept comfortable: by being fed and kept dry and warm. Through meeting these needs, you will develop your baby’s trust and sense of comfort.
Infants also need experiences that develop their senses. Use of mobiles, rattles, mirrors, or music will help fill this developmental need.
Infants who are ill are not able to understand illness cognitively. They often experience disruption of feeding, sleeping, and close contact with parents. This can disrupt normal development and bonding with parents. You should make sure that you interact with your baby in a soothing, comforting way.
It is helpful to interact with your child face to face. Talk or sing to him/her in a quiet voice. Cuddle with him/her to reduce tension. Gentle stroking and cuddling are also ways to reduce a stress response in your infant who is ill.
Generally, infants up to the age of around seven months will accept a substitute caregiver in place of mom or dad. After this time it is harder for the infant to be separated from you.
Toddlers (1 to 3 Years Old)
During the toddler years, a child works to develop a sense of independence and self-mastery. They continue to develop language skills and show great curiosity in learning new things. Toddlers learn by copying what they see others do. Play is an important part of mastering skills.
Toddlers cannot completely understand what it means to have cancer. Your child will understand that he/she doesn’t feel well and will not like taking medicines or having treatments. The unknown faces of hospital staff are intimidating, especially during medical procedures. Stay with your child during procedures when you can. Help him/her understand that the tests and medicine are needed in order to feel better. Let your child know that it is okay to cry.
A toddler’s biggest worry is being separated from his/her parents. Reassure your child that you will be there whenever possible. If you need to leave the hospital, make it very clear when you will return. Use times that a toddler can understand, such as “before you eat dinner,” rather than “at 4:30.”
Pre-School (3 to 7 Years Old)
During the pre-school years children master language and physical skills. They are very energetic in playing and feel satisfaction as they are able to gain new skills through play. They are now able to think and verbalize thought processes. However, this is the time period when children will have magical thinking. They believe they can think something, and it will happen. They also attribute life-like qualities to inanimate objects such as stuffed animals or dolls.
Children in this age group are better able to understand how serious cancer can be. They can understand that cancer is a serious disease and may be life-threatening, but treatable. They can understand that the doctors are doing everything possible to help them get better. However, because of your child’s magical thinking, your child may believe the cancer was caused by, or is a punishment for something he/she did or thought. Reassure your child that he/she did nothing to cause the illness.
Children this age may also fear physical pain. Explain medical procedures simply, honestly, and realistically to your child. Use language that is easily understood and non-threatening. Understanding what will happen will prepare your child to better cope with the procedures that will occur. Invite a child life specialist to assist you in preparing your child for procedures. They will encourage your child to play with and explore medical equipment (syringes, catheters, etc.). This type of play helps children learn about and prepare for medical procedures by making the tools more familiar.
School-Age (7 to 12 Years Old)
The challenge for children of this age is to become proficient in social, physical, and academic skills and to become more independent from parents.
School-age children focus on obeying rules that are set for them and peers have a strong influence on them. They want to “fit in” and not be different from the group. School-age children generally are better able to understand that illness can be cured by taking medicine and doing what the doctors say. With this understanding, they are more likely to cooperate with treatment. When explaining cancer to them, use familiar situations or images. For example, “Cancer cells are out of control and are trying to take over in your body. Chemotherapy tries to eat up cancer cells.”
Children in this age group may worry about dying, but they may be afraid to talk about it. Be open and honest — reassure your child that most children with cancer get better, but no matter what happens you will be there. If you are not sure what to say, ask a member of the care team that you feel comfortable with for help.
In addition to worrying about pain and separation, your child may be concerned about how the treatment will affect his/her appearance. Your child may be concerned about missing school — not only falling behind in class work, but missing out socially as well. Find ways to keep your child involved with schoolwork and friends.
Adolescents (12 years and Older)
Adolescence is a time of polishing skills and working to establish a unique identity. Teens examine beliefs and values of others and then decide which values and beliefs to incorporate into their own lives. This is also a time period when teens feel they are invincible. Many teens participate in risky activities.
Your teen is mature enough to understand his/her diagnosis and how it may change his/her life. Adolescents need to be fully informed about their diagnosis and its treatment. From past experiences, they may link cancer with dying. Your teenager needs to be reassured that childhood cancers are most often successfully treated. Your teen should be considered an important part of the treatment team, actively involved in treatment, and encouraged to take some responsibility for making sure the treatment goes smoothly.
Your teen may also be concerned about how the treatment will affect his/her appearance, specifically hair loss. Help him/her plan what to do to help with his/her appearance — wigs, hats, etc. Encourage him/her to keep involved with schoolwork and friends.
The teenage years are important years for your child to build self-confidence, independence, and personal values. Having a diagnosis of cancer at this time makes this extra difficult. As a parent, you will need to find ways to help your teenager through cancer treatment and through normal adolescent development.
Let your teenager know that his/her concerns are normal. Respect his/her concerns, just as you would want respect for your own opinion and feelings. Help your teenager remain active in as many areas of life as possible. Encourage your child to do independent activities whenever possible.
During their teen years, most young people begin to relate independently to their doctors during medical exams. Teens with cancer, however, tend to rely more on their parents and medical staff. You can help your child feel more independent and responsible by letting your child meet alone with the doctor and nurse. This allows your teen to strengthen communication skills with medical personnel. This action also respects your child’s growing need for privacy. After the exam, the doctor or nurse will share important medical information and answer questions with you and your teenager together. We encourage you to begin this pattern with your teenager if he/she is comfortable with it.
Encouraging independence does have its limits. Do not assume that your teenager will be able to completely fulfill his/her treatment plan without your help and support. As a parent, you have the ultimate responsibility for your child’s cooperation with treatment.
Because your child has cancer does not mean he/she is uninterested in sexuality. You should assume that sexual interest and activity are the same as any healthy adolescent. In fact, facing the fear of an uncertain outcome, a teenager may “act out” sexually as a way to affirm life, independence, or choice. Even though you may feel uncomfortable or embarrassed to talk about sexual issues, there is added importance in discussing these issues with your child.
Illegal Drugs, Alcohol, and Smoking
It is especially important that your child does not take illegal drugs during treatment. Your child is receiving strong medications. Their kidneys and liver are working extra hard to deal with these medications. Taking drugs that are not prescribed (including alcohol and tobacco) will stress these organs and interfere with how effective the treatment is. If you do not feel comfortable discussing these issues with your child, please ask your care team for help. They would be happy to give you ideas, sit with you while you talk with your child, or have a private discussion with him/her.