Coping when your child has cancer

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Pain in children

Having cancer doesn’t always mean having pain. Sometimes it can even be prevented, and if your child is in pain there are ways to help.

Types of pain

Pain is often described based on how long it lasts.

Acute pain is short-term pain. It comes on quickly, lasts a relatively short time and can range from mild to severe. It is caused by tissue damage or inflammation.

Chronic pain is long-term pain. It may last a few weeks or months or be ongoing. It may be constant or come and go, and it can range from mild to severe. Chronic pain can start as acute pain and then stay beyond the normal expected healing time. It is also called persistent pain.

Pain can also be described based on the part of the body it affects.

Nerve pain is caused by pressure on the nerves or spinal cord, or by damage to nerves. It may be described as burning or tingling. Children being treated for cancer may have nerve pain after surgery, radiation therapy or chemotherapy.

Bone pain is caused by damage to a bone and may be caused by cancer spreading to the bone. It may occur in one or more areas of bone. Bone pain is often aching, dull or throbbing.

Soft tissue pain is caused by damage to an organ or muscle. It is usually described as sharp, aching or throbbing.

Visceral pain is pain that starts in internal organs such as the intestine or bowel. It is often difficult to describe or find the source of the pain. It is described as colicky or vague and is often linked with other symptoms such as nausea and sweating.

Phantom pain is pain or changes in sensation in a body part that has been removed. For example, some people feel pain in an arm or leg that has been amputated.

Referred pain is when one part of the body causes pain in another part. For example, a swollen liver can press on nerves and cause pain in the right shoulder.

Causes of pain

Pain may be caused by the cancer itself, medical tests or procedures and cancer treatments or their side effects.

Tumours

Some tumours can cause pain as they grow. They can damage parts of the body or press on organs, nerves or bones. For example, a tumour may spread to the spine and cause spinal cord compression. Tumours can also cause pain if they block organs, tubes or blood vessels.

Medical tests or procedures

Medical tests or procedures sometimes cause pain. These tests or procedures can include injections, placing an intravenous line, a lumbar puncture, a bone marrow aspiration or surgery. Whenever they do a test or procedure, the healthcare team tries to prevent pain as much as possible.

Cancer treatments

Cancer treatments may cause pain. For example, surgery to remove a tumour can damage tissue or nerves. Some chemotherapy drugs may cause vomiting, diarrhea, constipation or mouth sores, which can be painful. Radiation therapy can also cause discomfort or pain, depending on the area treated.

Understanding your child’s pain

Understanding or assessing your child’s pain is the first step in treating it effectively. Pain is very personal and emotional, so it can be hard to measure. However, parents and the healthcare team can use different ways to get a good idea of the amount and type of pain that a child has. Assessing pain in children includes listening to what they say, watching for signs of pain and noticing how their bodies react to pain.

What children say

How children describe their pain is the most important part of assessing their pain. Only the child knows what the pain is like for them, so it is important to listen to how they report it.

It is important to assess pain by age and developmental level. Children may report their pain differently according to their age. An infant may kick and scream, while a toddler may use the words “owie,” “boo-boo” or “hurt.” Older children may describe their pain in more detail.

Some children may not say that they are in pain or they may be too young to tell you how they feel. A child may try to hide pain or not report pain because they fear injections or procedures or don’t want to go to the hospital. They may also hide pain because they don’t want to upset their parents or make them unhappy. Some children don’t report pain because they don’t want to appear weak.

Signs of pain

Some children express pain through changes in their behaviour. As a parent, you are more familiar with your child’s normal behaviour than the healthcare team. You can help assess your child’s pain by watching for any signs that they are in pain, such as:

  • making facial expressions of pain
  • crying or moaning
  • thrashing or kicking
  • staying very still
  • guarding or protecting the part of the body that hurts

When pain lasts hours, days or weeks, a child’s behaviour may change to include:

  • eating less than usual
  • having trouble sleeping
  • clinging to a parent
  • avoiding activities that they usually enjoy
  • misbehaving

How a child’s body reacts to pain

Another way to assess pain is to watch how your child’s body reacts to the pain. For example, some children sweat more when they’re in pain. The body can react in other ways – the heart rate goes up or breathing becomes heavy or laboured (as if they’ve been running).

Factors that affect pain

It is important to remember that children might not say they are in pain even though they are. Many factors can affect a child’s pain and each of these factors can influence the others. The healthcare team will consider the following factors when assessing your child’s pain.

Physical factors

Physical factors can directly affect how children feel pain. For example, pain feels worse when you are tired.

Psychological factors

Children’s emotions affect how they behave and respond to pain. Fear and anxiety are closely related to pain and may make pain worse, so it is important to consider if a child is afraid or anxious when assessing pain. On the other hand, being able to imagine, relax, play and share their feelings with others can help lessen children’s pain.

Behavioural factors

Your child may react to pain with changes in their behaviour. Depending on their age, children may react to pain with anger, fear, denial or anxiety. Some children cope with pain by distracting themselves with certain activities, such as watching television, talking on the phone, playing and reading.

Age and developmental stage

How pain is assessed will depend on your child’s age and developmental level. Children communicate or express pain in different ways according to their developmental stage. Children of different ages understand, communicate and react to pain in distinctly different ways. Younger children may connect pain with something they have done, while older children can associate pain with cancer and its treatment. Teens may be more reluctant to express when they are in pain for fear of appearing weak.

Gender

How we react to and express pain is often a learned behaviour and may be different for boys and girls. For example, boys are often taught that they shouldn’t cry or show pain. While boys will cry when they are young, they may try hard not to cry as they get older, especially if other people are around.

Culture

Family and cultural factors greatly affect how people feel and express pain. In some cultures, pain is seen as punishment or even as a necessity for reaching a spiritual level or status. Talk to your child’s healthcare team about any factors that may affect how your child feels and expresses pain. Language differences can also affect pain assessment and treatment. After assessing a child’s pain, the healthcare team usually develops a pain management plan that incorporates the family’s cultural practices, as long as they are compatible with treatment.

Managing your child’s pain

Once the healthcare team completes a pain assessment, they will develop a pain management plan. Managing pain is best done with a team approach that involves the child, their family and the healthcare team. The pain management plan depends on the child’s age, overall health, type of cancer, what parts of the body are affected and previous responses to pain and procedures or therapies. The healthcare team will also consider the child’s and their family’s preferences.

In general, a combination of pain-relieving methods will be used, including drugs to manage pain, medical therapies or physical, psychological or complementary methods. Many members of the healthcare team may be involved in managing your child’s pain. These might include pharmacists, anesthesiologists and child life specialists, psychologists or other counsellors. Music, art and recreational therapists may also be involved in managing pain.

Find out more about medicines for managing pain, medical therapies for pain and physical, psychological or complementary methods for pain.

Helping your child cope with pain

Parents can’t always make the pain go away right away, but there are ways you can help your child cope.

Be involved

The most important way to help children cope with pain is to be there and care for them. You know your child’s behaviour and expressions, so you can help by watching for any signs of fear, discomfort or pain. You can speak for your child to let the healthcare team know if they are scared or in pain. Children often look to people around them to know how they should react. Let the healthcare team know what things create a sense of calm for your child.

When talking to your child about pain, language is very important. Try to be as clear and honest as possible and use words your child can understand. Try to explain why something hurts. Give information that is appropriate for your child’s age and understanding.

Help reduce your child’s fear and anxiety

If possible, stay with your child in times of pain. Children may be scared if they are alone and in pain. Having a loved one close by helps comfort and reassure them. Be calm and confident. Remaining calm will help your child stay calm.

Explain any test or procedure in a way your child understands. Be honest about what is happening and what your child should expect. Rather than saying something will hurt, try to describe what your child might feel – for example, a quick pinch, sting or prick, burning or pressure. Never promise that something will not hurt when you know it will.

Give your child a sense of control. For example, let them hold the bandage or choose which finger to prick.

Trust your instincts as a parent. If your child seems to be in pain, contact the healthcare team and discuss ways to better manage the pain. Ask the healthcare team for a referral to see a child life specialist, pediatric psychologist or therapist.

Acknowledge the pain and be sympathetic

Ask your child to describe the pain and how much it hurts. This will help give your child a sense of control because they know that you believe them.

Use language that is hopeful and not alarming when you talk about pain. For example, you can talk about ways to get comfortable rather than about the pain itself. Talking can also help distract a child from pain.

Keep your child as relaxed and comfortable as possible

Make sure your child has enough sleep and time to rest. Fluff the pillows and help them change position so they are comfortable. Offer drinks or other things that you know they like. Make sure your child has comfort objects with them, such as a favourite toy, blanket, shirt or good-luck charm.

Learn and practise simple relaxation techniques, such as playing, listening to music, breathing deeply and evenly and using visual imagery. For example, have your child picture themselves in a safe, relaxing or fun place.

Distract your child from pain by giving them something fun or relaxing to focus on. Depending on your child’s age, you might blow bubbles, read a book, watch a movie, listen to music, take deep breaths or play a game.

Be affectionate and reassuring

Show your love and give emotional support by gently touching your child. This may include stroking, rocking or holding your child in your arms, rubbing their back or feet or applying ice or heat to certain areas of the body.

Be aware of how your own body shows tension and calmness. Use a calm voice and manner to reassure your child. Speak in a slow, low voice. Make your own breathing slow and deep. Relax your own body. Slow down your movements.

Questions to ask about pain

You can help manage your child’s pain by asking questions and then talking to the healthcare team. Try to take notes or record what the healthcare team says so you can review it later. These questions can get you started. Choose the questions that fit your child’s situation and add questions of your own. Remember that you can ask questions at any time during your child’s cancer experience. Your healthcare team is there to help.

  • What types of pain could my child have during and after treatment?
  • What medicines may be used to manage my child’s pain?
  • Are there other ways (not medicines or drugs) that might help manage my child’s pain?
  • How can we manage my child’s pain during uncomfortable procedures, such as injections and biopsies?
  • What side effects will my child be likely to experience from pain medicines? How will these side effects be managed?
  • How can we tell if my child is in pain?
  • Is there a pediatric pain team?
  • Who do I call at night or on weekends if my child is in pain?

Stories

Now I know that I will help someone with cancer even after I’m gone. It’s a footprint I want to leave behind me.

Read Barbara's story

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