Coping as a Patient

Mind & Body | GIST in Your World (Relationships) | GIST at Different Stages of Life | End of Life

Kids with GIST | Teens with GIST | GIST in Young Adults | GIST in Older Adults

How a Child Understands Cancer

For most parents, few things are as frightening as being told that your child has cancer. At a time when parents are dealing with their own fears and confusion, they must also face the responsibility of helping their child understand his or her cancer. Should I tell my child he or she has cancer? Many parents think they can protect their child by not telling him or her about the cancer diagnosis. Most children already know that something is wrong. They may not be feeling well or may wonder about frequent visits to the doctor or hospital. Children who are not told about their cancer often imagine things that are worse than the truth. They may think their illness is a punishment for bad behavior or they did something to make themselves sick. Older children who find out they have cancer from a doctor or nurse may be upset a parent did not tell them about the cancer. Not knowing what is wrong or what to expect may cause your child excessive anxiety and fear. If you are open and honest with your child in the beginning, he or she will be better able to maintain trust throughout the course of the cancer and treatment. In addition to experiencing less stress and guilt, children who know the truth are more likely to cooperate with treatment. Do what is best for your family, but try to keep the lines of communication about the cancer and your feelings about cancer open. What should I tell my child? What you tell your child will depend on both his or her age and what you think he or she is capable of understanding. The following guidelines briefly describe what children of different ages are likely to understand at each stage of development: Two to seven year olds Look for a specific cause for their cancer, such as something they did or thought Need to be reassured that they did not cause their cancer Still need reassurance that you will not abandon them Are afraid of pain and of being hurt. Be honest about tests and procedures that may hurt, but also explain that the treatment is being done to help make them better. You may also explain that doctors have ways of making the pain go away. Can understand cancer explained in simple terms Seven to 12 year olds Are less likely to believe that their cancer was caused by something they did Are more likely to understand that they will need to take medicine and undergo other treatments in order to get better Are still afraid of pain and of being hurt, therefore, honest information about tests, treatments, and pain control is needed Are capable of understanding a more detailed explanation of cancer Teenagers Are most likely to think about their cancer in terms of its symptoms and its impact on their daily activities such as school, sports, and relationships with friends Are capable of understanding the relationship between their symptoms and cancer and the role of treatment Can understand a complex explanation of their cancer and may have many detailed questions. They may be interested in learning more about their type of cancer. May want to be involved in making decisions about their treatment Have a unique set of concerns surrounding their physical appearance and their ability to fit in with others. They may be concerned about gaining or losing a lot of weight. It is important to talk honestly about the possibility of other side effects. The following resources are designed for children and teenagers to help them understand different aspects of their cancer: Just for Kids and Just for Teens from the Candlelighters Childhood Cancer Foundation provide links to websites designed to help children and teenagers understand their cancer. Points to remember when talking to your child about his or her cancer Practice what you are going to say beforehand and ask for advice from your child's doctor, nurse, social worker, or another parent who has been in a similar situation. When you first talk to your child, consider asking another person to be with you. This might be another family member who can provide emotional support, or a doctor or nurse who can help describe cancer in detail. A single conversation with your child probably won't be enough. Have frequent, brief conversations with your child to keep the lines of communication always open. Be open and honest and encourage your child to ask questions. Questions should be answered honestly, even if this means you don't know the answer and need to follow-up later. Share your feelings with your child and encourage them to share as well. You are your child's most important source of information and support. If they think they can't share their feelings with you, they may think they can't share them with anyone and, therefore, feel completely alone. Explain the meaning of cancer-related words your child may encounter at the doctor's office or hospital. For example, an x-ray is "a picture of the inside of your body," a tumor is "a lump inside your body." Talk to your child about the special treatments they will need and what will happen during the treatments. Be honest about possible pain and other side effects. For more information, read the PLWC Feature: Preparing your Child for Medical Procedures. Seek support for both you and your child. Sources of support include hospital social workers, support groups, individual and family counseling, and spiritual resources. Other resources that may be helpful include: Talking with Your Child, from the National Cancer Institute (NCI) publication, Young People with Cancer: A Handbook for Parents A special note on talking to your child about death Fortunately, childhood cancers are relatively rare, and up to 70% of children with cancer can expect to be cured. Unfortunately, not every child will recover from cancer and some parents are faced with the task of helping their child prepare for death. Each family has its own beliefs about death, and discussions should reflect these beliefs. Children also need to know that they will not be alone. For more information on talking to your child about death, view the following resources: Addressing Concerns about the Possibility of Death and If Death Must Come, from the Leukemia & Lymphoma Society publication, Emotional Aspects of Childhood Leukemia When the Cancer Cannot Be Cured, from the NCI publication, Young People with Cancer: A Handbook for Parents More information ASCO Expert Corner: Returning to School After Cancer PLWC: Cancer in Children PLWC: Cancer in Teenagers Additional Resources In addition to the resources listed above, the following sources provide information for parents and children: American Cancer Society provides a variety of resources for information and support. Candlelighters Childhood Cancer Foundation is an organization designed to educate and support children with cancer and their families. CureSearch represents the combined efforts of the National Childhood Cancer Foundation and the Children's Oncology Group. The website includes information about diagnosis and treatment for both parents and family and patients. National Childhood Cancer Foundation provides links to a variety of cancer information websites, including sites for kids, teens, and young adults.   Preparing your child for Medical Procedures Listen to the PLWC Podcast: Preparing Your Child for Medical Procedures, adapted from this feature. September 2003 Learning more about your child's cancer and the best ways to treat it may require a variety of medical procedures. Both surgical and diagnostic procedures can be a major source of anxiety and stress for both children and parents. Fortunately, much of the anxiety surrounding procedures can be reduced by carefully preparing your child and yourself. How does preparation help? Children's fear often comes from not knowing what to expect. While many parents think they should not tell a child about an upcoming procedure or that a procedure may hurt, children need honest information. If you do not tell your child that a procedure will hurt and then it does, you may lose your child's trust. Or, your child may start to expect all procedures to hurt, regardless of what you say. Most children can cope with pain, loud machines, or uncomfortable positions if they know when it is going to happen and how long it is going to last. Preparing yourself As a parent, in order to help your child prepare for a procedure, you need to prepare yourself. Ask your child's doctor or another oncology team member for written information about the procedure(s). Find out who will be administering the procedure and ask them to give you a step-by-step explanation of what will happen. Ask which parts of the procedure may be painful or frightening and what measures will be taken to control any pain. Find out how long any pain is likely to last. Take a tour of the room(s) where procedures will take place and familiarize yourself with any equipment that will be used. In addition to collecting information about the procedure, you will need to be prepared emotionally. Many parents become upset when their child is in pain or scared. Children sense this and become more scared and upset themselves. Knowing what to expect will help you stay calm, allowing you to better comfort and support your child. Preparing your child Children over the age of two should be given as much information about the procedure as they ask for. As with all the conversations you have with your child about cancer, your discussions should be geared to your child's age and level of understanding. You should be honest and open, but avoid graphic or overly frightening descriptions. Encourage questions, but look for signals that your child has received enough information, such as wanting to talk about something different or not wanting to talk at all. Below are tips for making sure your child knows what to expect. Discuss the procedure with your child, explaining step-by-step what will happen. Be honest about what may hurt or be scary. Have a nurse or social worker explain the procedure to your child—many hospitals employ child life specialists who specialize in helping children understand and cope with medical experiences. Ask if your hospital or clinic has educational materials for children. Many hospitals provide story or coloring books, videos, or pamphlets designed for children. Take your child on a tour of the procedure room(s). If possible, allow him or her to look at and touch the equipment. Have an oncology team member explain how each piece of equipment will be used. Have your child meet and talk to the person who will be performing the procedure. Encourage your child to ask questions. Explain words that may be used during the procedure, such as an "IV" is a "shot in the arm" or a "restraint" is a "seatbelt." Younger children often benefit from "playing" at a procedure before undergoing the actual procedure. Your child may want to watch the procedure being done on a teddy bear or doll first. Have a child life specialist or social worker help guide your child's play session. When you tell your child about an upcoming procedure will depend on both the age and personality of your child. In general, preschool-aged children need only be told a day or so in advance, while school-aged children and teenagers may want to know earlier. Some children may worry for days if told about a procedure too far in advance. Some school-aged children and teenagers may find it helpful to keep appointments on a calendar. You will probably need to experiment to determine what works best for your child. During the procedure You and your child may want to establish a special plan for procedure days; for instance, who will go to the hospital, what you will bring with you, or what special treat you will give your child after the procedure. Older children may want to write plans down on paper. Having a plan helps children feel more in control of the situation and respond more cooperatively, making the procedure easier. Be sure to discuss your plan with a member of your child's oncology team to make sure it will not interfere with the procedure itself. Below are tips for helping your child stay calm during procedures. Comfort your child with soothing words and gentle touches. Offer to hold your child's hand. Provide distraction by telling a story, singing, or reading a book. Older children may want to listen to music on headphones. Some hospitals have video players in treatment rooms. Encourage your child to bring along a favorite object such as a teddy bear or blanket. This is especially helpful for radiation procedures when your child must be alone in the room. If it helps your child, talk him or her through the procedure as it is occurring. Most children count on their parents for support during procedures and want a parent to stay with them. This may not be possible in some situations, so ask for an oncology team member to be present to comfort and support your child. Pain management Even the best preparation cannot eliminate all of the pain associated with some procedures. Talk with your child's doctor about pain management during procedures. For procedures that involve injections or intravenous (IV) insertions, pain medicine is usually rubbed on the skin or injected just under the skin. Longer procedures such as spinal taps or bone marrow aspirations usually require sedation or general anesthesia. A note on common fears Children's fears will depend on their age, personality, and the procedure itself. Usually, infants and younger children are most afraid of being separated from their parents, while older children are most afraid of pain. Some teenagers are not only afraid of pain, but also embarrassed to admit they are afraid of pain. Older children and teenagers may also be embarrassed if procedures involve their genital area. For procedures involving needles, pain is usually the biggest fear. Children who need surgery may be afraid of feeling pain during the surgery itself. They may not understand what it means to "go to sleep" with general anesthesia, and need to know that you will be there right after the surgery. Older children and teenagers may also worry about how their bodies will look after surgery. It is important that you discuss and acknowledge your child's fears and feelings. It may help your child to know that his or her fears are normal and that other children feel the same way. While most children learn to cope well with procedures, not all children do. This is especially true if your child has a pre-existing fear (such as a fear of needles) or has a bad experience with a procedure that does not go well. If your child is fearful of a certain procedure and it is repeated often, your child may benefit from working with a child psychologist or other specialist. For more information The following websites will help children and teenagers understand cancer-related procedures: CancerCare for Kids helps families throughout the country through their online and telephone support groups, telephone education workshops, and through the information available on their website. Just for Kids from the Midwest Children's Brain Tumor Center has tips for kids on visiting the doctor and information on common procedures. Just for Kids and Just for Teens from the Candlelighters Childhood Cancer Foundation provide links to websites designed to help children understand their cancer. The Candlelighters Foundation also offers free books to help children and teenagers learn about cancer and its treatment. Resources for parents Young People with Cancer: A Handbook for Parents (a National Cancer Institute publication) has information on treatment and side effects, common medical procedures, and pain management. American Cancer Society provides a variety of resources for information and support.   Reprinted with permission from the American Society of Clinical Oncology. All Rights Reserved.