by Sue McKechnie, CKN Editor
No parent wants to see their child suffer. Each and every one of us would take on the pain felt by our child if we could. In 2006 our 16 month old son, Shawn, was diagnosed with a cancerous brain tumour. We went from kissing his scraped knees to supporting him through surgery, radiation, chemo and many, many pokes and prods. Helping Shawn to remain comfortable was at the centre of our every day, our every moment. Because of his young age, Shawn was unable to verbally express his needs and as much as we understood his body language, we were traversing unknown territory when it came to assessing and managing his cancer pain.
Like many parents of children with life-threatening illnesses, we relied heavily on the medical care team assigned to Shawn and thankfully their expertise was invaluable. However, there were many times when that expertise was not readily available leaving us feeling helpless, as Shawn’s main caregivers. What I didn’t realize – and perhaps many other parents don’t realize – is that there are pain assessment tools available that can help, like the ones listed below.
When your child is in pain, everything else falls by the wayside. When you are able to assess and manage their pain, your child, your family and those around you can concentrate on making the best out of every day.
How do I know my child is in pain?
Parents know their child the best so they can help identify changes in their behavior that might indicate they are in pain. Here are three ways that can help determine if a child is in pain, in order of reliability:
- what the child says (verbal)
- how the child behaves (changes in movement, sleeping, eating)
- how the child’s body responds (heart rate, breathing, sweating)
How do I assess my child’s pain?
The best way to assess how much pain someone is in is to ask them, but for children, verbally expressing their level of pain can be difficult, especially for younger children who may not have the verbal skills to do so. Also, when both the child and their parents may be anxious and afraid it becomes even more difficult to tell how much discomfort the child is feeling.
Helping a child in pain starts with knowing they are in pain and the level of pain that they are experiencing. This can be difficult because pain itself is subjective and personal. Pain cannot be easily measured like heart rate, blood pressure or temperature.
How do we know what to ask children to understand how much pain they are having? We can say to the child, “I want to talk with you about the hurt you may be having right now, and ask, are you hurting right now?” If the child says no, zero is recorded for the amount of pain. If the child says yes, research has identified several age-based tools that have been proven to help determine how much pain a child is having. These tools can be kept in a handy place so the child can readily use them to communicate their pain. Here are a few examples.
1. r-FLACC (Assessing pain for non-verbal children)
For children older than 1 year who are unable to use words to talk about their pain, parents can use the revised Face, Legs, Activity, Cry, Consolability scale (r-FLACC) to assess the level of pain their child is experiencing.
To use this tool, parents need to observe the child for a specific period of time. For a child who is awake, observe for 1-3 minutes; for a child who is asleep, observe for approximately 5 minutes.
This scale looks at pain in 5 areas (face, legs, activity, cry and consolability) and the parent gives a score of 0-2 for each area. When each of the 5 areas has been given a score, the parent can then calculate a total score out of 10. When the score is 3 or more, we often find that some form of pain management is needed.
For more detailed information, follow this link to view the r-FLACC tool: http://ilemsc.org/PainMgt/rFLACC.pdf
2. The Pieces of Hurt Tool (for 3-6 year olds)
This tool can be used to identify how much pain a child is experiencing. The child is shown 4 of the same item lined up on a flat surface. You can use poker chips, quarters or your child`s favourite toy. It is important to use the same type and number of items each time you do an assessment to ensure your child understands the concept. Explain to the child that each piece represents how much they hurt. One item shows they hurt a little, two items show they hurt a little more, three means even more hurt and four identifies the most hurt the child has ever experienced. Simply ask the child, “How many pieces of hurt do you have right now?” Keep track of their answers each time you do this, in a log, to get a better understanding of their pain levels, what caused their pain, and what was done to ease their pain.
3. The Faces Pain Scale – Revised (for 4-12 year olds)
This free downloadable PDF can help assess all types of cancer pain. The child is shown pictures of faces with varying expressions and told that the face on the far left shows no pain and the face on the far right shows the most pain. The child is then asked to point to the face that shows how much pain they are experiencing right now. Choosing any face to the right of the 2nd image usually indicates that the child is experiencing moderate to severe pain and needs help. As with other tools, keeping track of each pain assessment, including what caused their pain and the action taken can help understand their level of pain and whether the strategies used to reduce the pain are working or not.
4. Numerical Scale (for 8 year olds and up)
The child is told that 0 = no hurt and 10 = the worst hurt possible. A score of 3 or more usually indicates that the child is experiencing significant pain and needs help to manage it. Oftentimes, after the child has been shown this scale once, this tool can be used without showing any picture.
5. Pain Squad App (for 8-18 year olds)
The Pain Squad app can be downloaded onto a Smartphone to measure how much pain a child is feeling, where in their body the pain is felt, the quality of the pain, how the pain impacts the child’s activities, and what helps to relieve the pain. This app has been shown to be effective in managing cancer pain in kids, and can be downloaded free of charge here: https://itunes.apple.com/ca/app/pain-squad/id929781246?mt=8. A great thing about this tool is that it will produce a PDF of your child’s pain ratings that you can bring with you to medical appointments or email to your health care team, to discuss whether the current pain treatments are working. A video explaining the Pain Squad App can be found here: http://www.sickkids.ca/Research/I-OUCH/Pain-Squad-App/index.html#Campaignvideo
Like many kids with cancer, my daughter Phoebe spent many days in hospital and was wise beyond her years. For this reason, at just five years old, she responded best to the Numerical Scale and used it to measure her pain. Phoebe had a very high tolerance for pain and often took it upon herself to control her pain with breathing techniques, so when she talked about her “number”, we knew she needed better pain management. Having this tool helped to give us a clear way to talk about pain in a way that Phoebe could understand and relate to. – Jenny Doull, mother of Phoebe
Over the next 12 months we will be bringing you the very best, cutting-edge research evidence about children’s cancer pain through our monthly blogs and videos. Stay tuned by following us on social media using the hashtag #KidsCancerPain. Together, we are “Making Cancer Less Painful for Kids”.
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book “A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer” hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Megan’s Walk (http://www.meaganswalk.com/); benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.
Special thanks to: Jenny Doull, Childhood Cancer Advocate and Mother of Phoebe Rose and Mae, for her comments.
Reference: Stinson, J.N., Kavanagh, T., Yamada, J., Gill, N., Stevens, B. (2006). Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents. Pain,125(1-2), 143-57. Epub 2006 Jun 13.