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Anxiety Around Medical Procedures
As a part of your child’s cancer treatment, your child may have to undergo medical procedures that are painful. Children respond to painful procedures in many different ways. As a parent, it can be very difficult to watch your child when they are scared and/or in pain. Even though you understand that these procedures are necessary for fighting cancer, your child may not understand — and it is often hard to see how something is good for you when it also causes you pain! Helping your child get ready for procedures can make them easier to deal with.
Here, we talk about how to share information with your child to prepare for upcoming medical procedures, about pain, and providing some tips for helping your child cope. While we cannot expect to completely eliminate pain in most situations, there are some basic steps you and your child can take to ease pain. It is also helpful to talk with your child’s doctors, nurses, psychologists, social workers or pain specialists (if available in your hospital). These professionals are trained to help children with pain and can work with you and your child to figure out a coping plan. Children respond to pain in different ways, and you may need to try a few different things before you find something that works for your child. Remember, you are the expert when it comes to recognizing that your child is in pain and identifying things that help soothe your child.
Of course, how much information you give and when you talk with your child depend on how old your child is, your child’s history with painful procedures, what type of procedure your child needs to have, and your best judgment about when to inform your child. Children usually need more time to prepare for more invasive and painful procedures — generally between a few days and a week before the procedure, but the timing depends on your child’s age and developmental level.1 Older children generally need more detailed explanations than younger children.
Information should be specific — tell your child what he or she can expect to happen (the procedure) and what he or she might feel (the sensory experience). Use simple language that your child can understand and check understanding by having your child tell you in his or her own words what might happen. Encourage your child to ask questions and be sure to ask your medical team any questions that you can’t answer.
Your child might ask, “is it going to hurt?” Your first instinct might be to say it won’t, in order to reduce fear or worry, but it is important to tell the truth so your child trusts what you say. This is also another opportunity to show your child that you know they can handle it — letting him or her know that they are likely to feel some “prick/pain/ouch” (or whatever word you and your child use to describe pain) but they will get through it and can then get back to more fun activities.
If your child seems very nervous about what the procedure is or where it will happen, it may be possible to work with your medical team, especially psychologists or child life specialists, to see the room where the procedure will take place or practice with a sample of the medical equipment that will be used. For example, children who were able to practice putting on the anesthesia mask prior to their surgery as part of a copings skills intervention were less nervous about putting on the mask during their actual surgery.2 Some hospitals also have specialized pain teams that work with children who have long-lasting or complex pain to help ease their suffering.
There are medications and creams that can help block or reduce the pain your child is experiencing, and they differ for different kinds of pains. For a discussion of medical or “pharmacological” options, review the information for a specific test in the Tests and Procedures section.
Emotions
It’s normal to feel scared or nervous before a medical procedure or any other big event. Take professional athletes, for example. Even though they are very good at what they do, they still get nervous and have to manage their feelings so that they can perform well. Have you ever watched a professional athlete right before the big event starts? What have you seen them do? Perhaps you’ve seen some athletes wearing headphones on the sidelines before the game starts. What do you think listening to music does for them — make them more tense? Probably not, or they wouldn’t do it. How about more relaxed? Next time you see a basketball game, watch what a player does as he or she is standing on the foul line ready to take a free throw shot. Most athletes take a slow breath right before taking the shot — just one way of helping their bodies and feelings stay calm.
To help your child feel more calm and relaxed, think about the things that normally relax and soothe your child — music, reading, etc. These things can help keep your child calm before a procedure is ready to begin. One of the most important things you can do to help your child cope is to stay calm yourself. Children and teens read body language pretty well. A grimace when you see the needle or turning away in horror when you see the procedure start, are cues that this is going to hurt! Now, it is very hard to watch your child in pain and it is okay to look away from the needle or whatever is happening, but it’s really important to communicate to your child that this is something they can handle. Staying cool and calm shows that you believe they can handle it.
Remember, you’re not in this alone. Talk with your child’s doctors, nurses, psychologists, social workers or pain specialists about ways to help manage your child’s pain.
Before the procedure begins, thinking about how much it’s going to hurt and how hard it’s going to be to get through it can make your child more nervous, therefore increasing his or her pain. During the procedure, paying a lot of attention to the pain, watching what is happening and thinking a lot about it also make pain worse. Here are some ideas to help your child manage their thoughts and attention to pain.
Be sure to point out how well your child did and heap on the praise. Many children have an opportunity to gain self-esteem and feelings of well being from their success. Your child should feel terrific about their accomplishment. You can also remind your child before the next procedure that they did such a great job last time and can do it again! Also, ask your child how much it hurt. If less than they anticipated, remind them of that before the next procedure.
Rewards. Getting procedures done can be challenging for some children. If this is the case for your child, be clear about your expectations. For example, you need to hold still. Or, you cannot kick the nurses. With clear goals in mind that your child understands, think about a small reward for their success. You help your child during the procedure and when they succeed, reward their efforts.
References
1. Jaaniste T, Hayes B, Von Baeyer CL. Providing children with information about forthcoming medical procedures: A review and synthesis. Clinical Psychology: Science and Practice. 2007;14(2):124-143.
2. Kain ZN, Caldwell-Andrews AA, Mayes LC, et al. Family-centered preparation for surgery improves perioperative outcomes in children: a randomized controlled trial. Anesthesiology. 2007;106(1):65.
3. Blount RL, Piira T, Cohen L. Management of pediatric pain and distress due to medical procedures. Handbook of pediatric psychology. 2003;3:216-233.
4. Blount RL, Zempsky WT, Jaaniste T, et al. Management of pediatric pain and distress due to medical procedures. In: Roberts MC, Steele RG, eds. Handbook of Pediatric Psychology. 4th Ed. ed. New York: Guilford Press; 2009:171-188.
Here, we talk about how to share information with your child to prepare for upcoming medical procedures, about pain, and providing some tips for helping your child cope. While we cannot expect to completely eliminate pain in most situations, there are some basic steps you and your child can take to ease pain. It is also helpful to talk with your child’s doctors, nurses, psychologists, social workers or pain specialists (if available in your hospital). These professionals are trained to help children with pain and can work with you and your child to figure out a coping plan. Children respond to pain in different ways, and you may need to try a few different things before you find something that works for your child. Remember, you are the expert when it comes to recognizing that your child is in pain and identifying things that help soothe your child.
Telling Your Child about an Upcoming Procedure
Doctors might talk with you first, without your child present about a procedure your child must have, especially if your child is younger. As a parent, you have to decide how much of this information to give your child and when to talk about it. In general, giving your child information ahead of time can help reduce distress about the procedure. It also gives your child the opportunity to ask questions and practice coping skills.Of course, how much information you give and when you talk with your child depend on how old your child is, your child’s history with painful procedures, what type of procedure your child needs to have, and your best judgment about when to inform your child. Children usually need more time to prepare for more invasive and painful procedures — generally between a few days and a week before the procedure, but the timing depends on your child’s age and developmental level.1 Older children generally need more detailed explanations than younger children.
Information should be specific — tell your child what he or she can expect to happen (the procedure) and what he or she might feel (the sensory experience). Use simple language that your child can understand and check understanding by having your child tell you in his or her own words what might happen. Encourage your child to ask questions and be sure to ask your medical team any questions that you can’t answer.
Your child might ask, “is it going to hurt?” Your first instinct might be to say it won’t, in order to reduce fear or worry, but it is important to tell the truth so your child trusts what you say. This is also another opportunity to show your child that you know they can handle it — letting him or her know that they are likely to feel some “prick/pain/ouch” (or whatever word you and your child use to describe pain) but they will get through it and can then get back to more fun activities.
If your child seems very nervous about what the procedure is or where it will happen, it may be possible to work with your medical team, especially psychologists or child life specialists, to see the room where the procedure will take place or practice with a sample of the medical equipment that will be used. For example, children who were able to practice putting on the anesthesia mask prior to their surgery as part of a copings skills intervention were less nervous about putting on the mask during their actual surgery.2 Some hospitals also have specialized pain teams that work with children who have long-lasting or complex pain to help ease their suffering.
Pain
Pain is subjective — that is, pain is experienced differently by different people and the only way to know if someone is in pain is by talking with them and seeing how they act. Since you know your child best, doctors may rely on you to help them understand your child’s pain.All pain has three parts:
- Biology
- Emotions
- Thoughts
Coping with Pain - What can we do about each part?
BiologyThere are medications and creams that can help block or reduce the pain your child is experiencing, and they differ for different kinds of pains. For a discussion of medical or “pharmacological” options, review the information for a specific test in the Tests and Procedures section.
Emotions
It’s normal to feel scared or nervous before a medical procedure or any other big event. Take professional athletes, for example. Even though they are very good at what they do, they still get nervous and have to manage their feelings so that they can perform well. Have you ever watched a professional athlete right before the big event starts? What have you seen them do? Perhaps you’ve seen some athletes wearing headphones on the sidelines before the game starts. What do you think listening to music does for them — make them more tense? Probably not, or they wouldn’t do it. How about more relaxed? Next time you see a basketball game, watch what a player does as he or she is standing on the foul line ready to take a free throw shot. Most athletes take a slow breath right before taking the shot — just one way of helping their bodies and feelings stay calm.
To help your child feel more calm and relaxed, think about the things that normally relax and soothe your child — music, reading, etc. These things can help keep your child calm before a procedure is ready to begin. One of the most important things you can do to help your child cope is to stay calm yourself. Children and teens read body language pretty well. A grimace when you see the needle or turning away in horror when you see the procedure start, are cues that this is going to hurt! Now, it is very hard to watch your child in pain and it is okay to look away from the needle or whatever is happening, but it’s really important to communicate to your child that this is something they can handle. Staying cool and calm shows that you believe they can handle it.
Remember, you’re not in this alone. Talk with your child’s doctors, nurses, psychologists, social workers or pain specialists about ways to help manage your child’s pain.
Here are some other tips to help your child right before and during a procedure:
- Breathe slowly. When people are nervous or panicking, their breathing gets fast and their heart beat goes up. To stay calm, do the opposite — breathe slowly. It is hard to be nervous or scared when you are breathing slowly and calmly. This also gets a child’s focus onto something besides the procedure—they are thinking about breathing.
- Hold your hand still and make it relax. Give your child the job of holding his or hand still and making it relax. Your child can put his or her hand wherever it’s comfortable — a lap, resting on the arm of a chair or bed, etc. If your child’s hand is really shaky, you can put your hand on top of it to help him or her relax it. As your child calms down, you can remove your hand or keep it on; you can let your child decide. Again, it is hard to be scared when your hands are calm and relaxed. You will also notice that you usually have to breathe slowly to keep your hand relaxed. The beauty of this exercise is that your child can do it anywhere, anytime without anyone even noticing! This makes it a good trick to use when feeling nervous before a test or a presentation at school, or before a big sports event.
Before the procedure begins, thinking about how much it’s going to hurt and how hard it’s going to be to get through it can make your child more nervous, therefore increasing his or her pain. During the procedure, paying a lot of attention to the pain, watching what is happening and thinking a lot about it also make pain worse. Here are some ideas to help your child manage their thoughts and attention to pain.
- Think about something else. If your child is worrying about the procedure, talk about other things or read a book or magazine, tell stories or sing songs. Anything interesting to get his or her mind off it!
- Distraction. Focus your child’s attention on something more fun and engaging — a toy, a video, bubbles, etc. — and away from the pain and procedure.3 The best activities for distraction are simple, very appealing and require some response that you can easily see so you know whether your child is engaged or needs more encouragement. Also, the activity shouldn’t interfere with the medical procedure (so things that require a lot of action are not good for keeping children still during the procedure). Examples are toys, musical toys, party blowers, windmills, videogames, videos, singing, telling stories, books such as “Where’s Waldo” and counting. You can use anything your child really likes. For younger children, introducing a new toy might be appealing. For older children, letting them choose enjoyable music, magazines or videos can be helpful. Special video games or apps are also especially appealing.
- Go to your favorite place. Coach your child to use his or her imagination and pretend to be in a favorite place — this can be anywhere your child likes to go! Your child should relax, breathe slowly, close their eyes and imagine all the things that he or she would be able to see, hear, touch and feel in the favorite place. Older kids are usually pretty good at using their imagination to go to their favorite place. It can be fun to find out what your child’s favorite place is and how it compares to yours. Children sometimes have more “active” scenes that relax them compared to adults (e.g., amusement parks). Just talking about favorite places is distracting even if you don’t go there in your imagination.
After the Procedure
Soothe your child. Once the procedure is over, soothing your child through hugs, gentle massage and calm talk helps recovery. Think about things that have worked to calm your child in the past (even if not related to medical procedures) and use them now. Some families have found it helpful to have a post-procedure ritual, something relaxing and enjoyable that they do together. This could be listening to good music, watching a favorite show or movie, reading fun magazines or anything your child would look forward to after getting through a tough procedure.Be sure to point out how well your child did and heap on the praise. Many children have an opportunity to gain self-esteem and feelings of well being from their success. Your child should feel terrific about their accomplishment. You can also remind your child before the next procedure that they did such a great job last time and can do it again! Also, ask your child how much it hurt. If less than they anticipated, remind them of that before the next procedure.
Rewards. Getting procedures done can be challenging for some children. If this is the case for your child, be clear about your expectations. For example, you need to hold still. Or, you cannot kick the nurses. With clear goals in mind that your child understands, think about a small reward for their success. You help your child during the procedure and when they succeed, reward their efforts.
Is there anything that I should avoid doing?
Although many parents’ first response is to empathize with their child (“I know it hurts, baby”; “I’m so sorry you have to do this”), excessive reassurance and apologizing to your child can actually increase distress rather than soothe.4 These comments usually focus the child’s attention on their fear and pain, rather than encouraging the child to actively cope with the procedure. While some reassurance is okay, coaching your child to cope rather than only focusing on the pain helps lower your child’s distress.What if these strategies don’t work for my child?
If your child is having a particularly hard time dealing with pain, talk to your doctors, nurses and support team members, like psychologists or child life specialists. Your hospital may even have pain specialists, though they may not be located within the cancer center. These professionals can work with you and your child to try additional strategies to manage your child’s pain and distress. If they teach your child a new strategy, ask them to teach you too, so that you can help your child use the strategy again.References
1. Jaaniste T, Hayes B, Von Baeyer CL. Providing children with information about forthcoming medical procedures: A review and synthesis. Clinical Psychology: Science and Practice. 2007;14(2):124-143.
2. Kain ZN, Caldwell-Andrews AA, Mayes LC, et al. Family-centered preparation for surgery improves perioperative outcomes in children: a randomized controlled trial. Anesthesiology. 2007;106(1):65.
3. Blount RL, Piira T, Cohen L. Management of pediatric pain and distress due to medical procedures. Handbook of pediatric psychology. 2003;3:216-233.
4. Blount RL, Zempsky WT, Jaaniste T, et al. Management of pediatric pain and distress due to medical procedures. In: Roberts MC, Steele RG, eds. Handbook of Pediatric Psychology. 4th Ed. ed. New York: Guilford Press; 2009:171-188.
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