Listen to the Cancer.Net Podcast: Preparing Your Child for Medical Procedures, adapted from this feature.
Doctors may need to perform a variety of medical tests and procedures to learn more about your child's cancer and to provide the best treatment. Anticipating and having these procedures often is 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 you and your child. The amount and type of preparation needed may vary depending on whether the procedure is a diagnostic examination or a treatment procedure. Diagnostic examinations may happen infrequently, while treatment procedures may be frequent occurrences for a specific time.
Why preparation helps
Many parents think they should not tell a child about an upcoming procedure, especially if they anticipate it may hurt. However, children need clear and honest information. If you tell your child that a procedure will not hurt, and then it does, the child may be surprised and confused. Your child may then expect all procedures to hurt and will not believe you if you say otherwise. Many children can cope with pain, loud machines, or uncomfortable positions if they know when it will happen and how long it will last. With this upfront information, your child may be able to express what he or she needs to stay calm and bear the unpleasant experience. You may want to explain to your child that things that are unpleasant have to be done to help him or her get better, but remind the child that he or she is not having this procedure because he or she did anything wrong.
It is natural for you to become upset if your child is in pain or scared. Take the time you need to learn about the procedure and prepare yourself emotionally. Knowing what to expect will help you stay calm, allowing you to better comfort and support your child.
Find out the details of the procedure or intervention, such as who will perform it, how long it is expected to last, and what kind of sedation or anesthesia will be provided. In addition, ask which parts of the procedure may be painful or frightening, what measures will be taken to control any discomfort, and how best to prepare your child so that he or she may be relaxed. Also ask whether you will be able to stay with your child.
A social worker, nurse, child life specialist, or another member of the health care team can help you find the right words to explain the medical procedures and help your child understand what is happening.
Preparing your child
Children older than age 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. 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 changing the subject or expressing a lack of interest in talking. Below are tips for making sure your child knows what to expect.
- Ask the hospital staff whether it offers a pre-admission program. These programs allow children and families to familiarize themselves with the procedure and the equipment that will be used. If not, have a nurse or social worker explain the procedure to your child.
- Ask if your hospital or clinic has educational materials for children. Many hospitals provide story or coloring books, videos, or pamphlets designed for children.
- Younger children often benefit from "playing" a procedure before undergoing the actual procedure. Your child may want to watch the procedure being done on a teddy bear or doll first. A child life specialist or social worker can help guide your child's play session. At home, you may want to rehearse this procedure with your child. For example, with radiation therapy or a magnetic resonance imaging (MRI) test, you can practice with your child by holding still for the length of time that the treatment or procedure will occur.
- If your child is staying overnight in the hospital, speak to the nurse or child life specialist about using the treatment room versus the child's hospital bed for any procedures. It is important, whenever possible, to keep the child's bed a safe space.
When to tell your child about an upcoming procedure depends on both the age and personality of your child. In general, preschool-aged children only need to 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 they are told about a procedure too far in advance. Meanwhile, 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. Parents know their child the best, but a general rule of thumb is to determine how soon to tell your child about a procedure based upon his or her age. For example, a three-year-old child can be prepared three days in advance of the procedure. Another important rule of thumb is to prepare the child according to his or her senses, addressing what the child will see, smell, hear, taste, or touch during the procedure.
During the procedure
You and your child may want to establish a special plan for procedure days; for instance, determine who will go to the hospital, what you will bring with you, and what special treat you will give your child after the procedure. Older children may want to write plans down. Having a plan helps children feel more in control of the situation. Be sure to discuss your plan with a member of your child's health care team to make sure it will not interfere with the procedure.
Consider these tips for helping your child to remain as calm as possible 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. Sometimes children like to imagine pleasant scenes during a procedure, such as going shopping, playing at the beach, or scoring the winning goal. These types of experiences can help pass the time.
- 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. You may want to give your child something of yours, such as a scarf or keys. For procedures involving radiation therapy, it is a good idea for the child to bring his or her own music or book on CD to listen to during the treatment.
- Give your child an achievable goal, such as holding still. Tell your child that is okay to cry, but that his or her job is to keep still during the procedure.
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 the doctor for guidance and identify who will be present so that you can ask them to comfort and support your child.
It is important to make arrangements for the siblings in advance of the procedure day and inform them in an age-appropriate manner of what will be happening with their brother or sister. Try to keep their routine as regular as possible, and make sure that the siblings know how to contact you on that day.
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 medication is usually rubbed on the skin or injected just under the skin to numb the area. Longer procedures, such as spinal taps or bone marrow aspirations, usually require sedation or general anesthesia.
Children's fears 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 and worry about privacy during the procedure.
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 the "special sleep" associated with general anesthesia, and they need to be reassured that you will be there after the surgery. Find out if the hospital policy allows you to be in the recovery room after your child wakes up from the anesthesia.
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.
Although 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 had a bad experience with a procedure that did not go well. If your child is fearful of a certain procedure, your child may benefit from working with a child life specialist or a child psychologist or psychiatrist who is a member of your child's health care team.
After the procedure
You may notice some behavioral changes in your child after the procedure. Some children may regress by acting younger than their age. Others may cling to you more than usual and will not separate from you as easily as they have in the past. These are common reactions that usually disappear with time. Acknowledge your child's frustrations and regressive behavior, but it is important to continue to provide age-appropriate activities and remain consistent with your family's regular routine and behavioral guidelines.