Pain and childhood cancer

Pain and childhood cancer

Children have different ways of letting us know they are in pain. The same procedure can cause a different amount of pain each time a child has the same procedure.

Key points to remember about pain and childhood cancer

  • 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 they can put a good pain management plan in place
  • children have different ways of letting us know they are in pain
  • the same procedure can cause a different amount of pain each time a child has the same procedure

How can I tell if my child with cancer is in pain?

This page is part of a whole section about childhood cancer.

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.

You know your child better than anyone and you are the best judge of their pain. 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 trust their instincts. You are the experts and health professionals often rely on the parents' reports to decide on the type of medicine your child needs to be comfortable.

How can I help my child with cancer experience less anxiety and pain?

You can play an important part in helping your child experience less anxiety and pain. Families can expect to be as involved in their child's care as they wish to be.

Anxiety and fear can make pain feel worse. You can help by explaining what is going to happen and by suggesting small actions that your child can choose to do, such as:

  • how to get onto a treatment bed
  • which finger for a skin prick
  • how to travel to the operating theatre

Although children may display or verbalise more distress in the presence of their parents/caregivers, there is evidence that your presence is a helpful contribution to pain management. Because you can often accurately judge your child's pain, you can help the healthcare team to recognise your child's pain levels.

Health professionals will recognise and respect the amount you wish to, or are able to be, involved in your child's care.

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

Talk to your child and get them to point to where they are sore. 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.

Use pain tools

There are a number of different pain tools that you can use with your child to discuss the 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.

Pain scales

Drawing illustrating the different faces of pain

Both scales are from 1 to 10. 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 health professionals have confidence that what they are seeing is pain, they 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

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 4 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 8 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 medicines.

Doctors, nurses and other people caring for your child can usually reduce or sometimes even remove all pain and discomfort.

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 healthcare 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 Pain treatment in childhood cancer.

All the pages 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.

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 05 October 2018.
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