Pain and childhood cancer

Pain and childhood cancer

Children have different ways of letting us know they are in pain. The same injury can cause a different amount of pain in different children and the same procedure can cause a different amount of pain each time it is done to the same child.

Key points to remember

  • expect your child to experience no more than mild pain
  • your child should be comfortable enough to move around and engage with others they know well
  • if your child appears to have poorly controlled pain, let your nurse or doctor know so that a good pain management plan is put in place
  • children have different ways of letting us know they are in pain
  • the same injury can cause a different amount of pain in different children and the same procedure can cause a different amount of pain each time it is done to the same child

How can I tell if my child is in pain?

Pain is a common unwelcome sensation that we all experience at different times through our lives. Children often experience some pain as they learn to walk, ride bikes and do all the normal stuff children do. Pain is something we do not enjoy; and as children develop they learn to avoid things that cause pain.

Unfortunately pain is also often present and an unavoidable part of being unwell. Pain adds worry to an already miserable situation and has no useful purpose. Despite this, children do not always admit they are sore; especially when they are in a different environment like a hospital. Young children often deny pain because they fear what will happen to them, such as having medicine. However you have spent a lot of time with your child and know them well. You might notice things about your child like:

  • being grumpy and fussing over things
  • being difficult to comfort or distract
  • not sleeping through the night
  • refusing food and drink
  • lying very still and not wanting to move
  • not wanting to get up and play
  • being clingy and not wanting you to leave the room
  • having a 'pain face'
  • holding or protecting a body area
  • hitting the sore part of their body; for example, hitting their head if they have a headache
  • being unusually angry and physical

With such a variety of ways children show us they are in pain, how can parents know if their child is really in pain or has some other problem?

Who is the pain expert?

Your child is the expert on how much pain they are experiencing. Try to get as much information as possible from your child. Children as young as two or three will be able to give some information about the pain. But if your child is unwilling or unable to talk about their pain, the person who is the best judge of how sore they are is you, their parent or caregiver.

Parents need to have the confidence to know they know, and to trust their instincts. You are the experts and health professionals often rely on the parents' reports to decide on the type of medicine required to get your child comfortable.

How can I find out how much pain my child is having?

When you first arrive in hospital the responsibility may seem a little overwhelming, but there are a few things that can help to find out how much pain your child is having:

  • talk to your child and get them to point to where they are sore. Also ask if the pain is there all the time or whether it comes and goes. Children and parents often know what will help to relieve the pain. Ask them what sort of words they might use to describe it, like achy, dull, burny, or sharp. It is also useful to know if the pain only bothers your child at night
  • there are also a number of different pain tools that you can use with your child to talk about the amount of pain. The most common is the "Faces Pain Scale" and a newer version called the "Faces Scale Revised". Generally adults like the round faces but children find it easier to use the other ones. At the end of the day it doesn't really matter a lot as long as one is used

Some helpful tools

Pain scales
 

Drawing illustrating the different faces of pain
 

Both scales are from one to ten. What do the numbers mean?

Face 0 – No pain
Face 2 - Mild Pain
Face 4 - Moderate pain
Face 6 - Strong pain
Face 8 - Very strong pain
Face10 – Worst pain imaginable

Notice there are no tears in the second line of faces. Children do not have to be crying to have severe pain. In fact children may become extremely still and withdrawn when in severe pain.

Behavioural rating scales

Behavioural rating scales are used for very young children who don't have the language to enable them to talk about their pain. The FLACC Behavioural Scale is the most commonly used. The main benefit of using this scale with infants and young children is that it gives both parents and health professionals confidence that what they are seeing is pain rather than crying or other forms of misery due to wet nappies or hunger etc. When we have confidence that what we observe is pain, we are more likely to treat the pain with the right amount of pain relief.

FLACC (Face Legs Activity Cry Consolability Scale) Behavioural Rating

 
 0
 1
 2
 Face

 No particular expression

or smile

 Occasional grimace or
frown; withdrawn;
disinterested
 Frequent to constant frown;
clenched jaw; quivering chin
 Legs  Normal position or relaxed
 
 Uneasy, restless, tense
 Kicking or legs drawn up
 Activity
 Lying quietly; normal position;
moves easily
 Squirming, shifting back
and forth;  tense
 Arched, rigid or jerking
 Cry
 No cry (awake or asleep)
 Moans or whimpers;
occasional complaint
 Crying steadily; screams
or sobs; frequent complaints
 Consolability
 Content, relaxed
 Reassured by occasional
touching / hugging / talking to;
distractible
 Difficult to console
or comfort

Other tools

Poker Chips
This is a tool which is useful for children who are three to four years of age. The child is shown four poker chips and asked to take the number that shows how much pain or sore they have.

Numerical scale
Children are asked to rate their pain from zero to 10. Zero is no pain and 10 is as bad as it can possibly be. This can be useful for children over eight years of age.

What causes pain and discomfort?

There are lots of different reasons a child with cancer might experience pain. It is common for children to have some pain when they first come to hospital because of the pressure of the cancer cells on other body organs.

During their treatment, pain might occur during treatments or as a side effect of some medications.

The important thing to know is that one of the goals during treatment is to remove as much pain and discomfort as possible. With the help of doctors, nurses and other people caring for your child, almost all pain and discomfort can be reduced or removed totally.

Always tell the doctors and nurses if your child says they are sore or if it appears to you that there might be pain. As a general guide, if something would be painful to an adult it is equally painful to a child.

The health care team will work with you and your child if old enough, to find out what is causing the pain and to decide the best treatment.
See:

Where to go for information and support

On this website

All the information in the Childhood cancer section of this website have been written by health professionals who work in the field of paediatric oncology. They have been reviewed by the members of the National Child Cancer Network (NZ). Medical information is authorised by the National Child Cancer Network Clinical Leader.

First faces pain scale (round faces)
Wong-Baker. FACES Pain Rating Scale. From Hockenberry MJ, Wilson D: Wong’s essentials of pediatric nursing. 2009. 8th ed. St. Louis: Mosby.

Second faces pain scale (elongated faces)
Hicks C.L. and others. 2001. The Faces Pain Scale - Revised: Toward a common metric in pediatric pain measurement. Pain. 93:173-183.

FLACC (Face Legs Activity Cry Consolability Scale) Behavioural Rating Scale
Merkel, S. and others. 1997. The FLACC: A behavioral scale for scoring postoperative pain in young children. Pediatr Nurse. 23(3):293-297. Copyright: Jannetti Co. University of Michigan Medical Center.

This page last reviewed 22 June 2013.
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