by: Dr. Christine Chambers, Child Psychologist & Professor, IWK Health Centre & Dalhousie University & Dr. Jennifer Stinson, Nurse Clinician-Scientist & Associate Professor, The Hospital for Sick Children & University of Toronto
“As parents we never want to see our children in pain. Whether it’s a scraped knee or a broken bone, we just wish we could take it all away and make them feel better. Now imagine having a child with cancer. When our son, Shawn, was first admitted to the hospital after he was diagnosed with a brain tumour, they inserted an IV into his little arm. He screamed and I distressed at the cruelty of this intentional pain. Little did I realize that an IV insertion was the least of our worries as we journeyed down the road of surgery, radiation, chemotherapy and the thousands of pokes and prods that Shawn endured. Pain management is at the epi-center of comfort. Providing comfort to Shawn was at the core of my job as his mother. When his pain was at the surface, it was all that mattered and it robbed him of every second. When his pain was managed well we were all able to concentrate on what truly mattered: love, laughter and living.” – Sue
Pain is one of the most difficult things that children with cancer have to deal with. They can experience extreme, long-term pain throughout their disease and treatment. Pain makes it hard for kids to be kids. It affects quality of life, interferes with healing, and can be very distressing for both children and their families.
“The pain memories are the worst.” – Patrick
Cancer pain can be caused by procedures, treatments, or the disease itself. Whatever the cause, research has shown that there are a variety of ways to help children with cancer pain. We can assess their pain and better manage it using strategies like distraction, relaxation, and medications. Unfortunately, despite all the research, we know that children with cancer don’t always get the best pain management. We know that parents are often looking for more information about ways to help their children.
“Morphine, methadone, ketamine, siufentanyl and, fentanyl patches. All drugs I had to give to my son to try to address that pain caused by his tumours. Not to keep him out of pain, just so he could keep moving which ultimately tended to be the pain medication that helped him the most.” – Patrick
As a psychologist and as a nurse who study children’s pain, we have worked with thousands of children with pain, including children with cancer, and we are firm believers in the power of parents. Of course it’s important for health professionals to know about children’s pain, but it’s just as important for parents to be educated and involved when it comes to pain management. Parents are there. They’re part of the pain experience and it’s not easy. When they have access to the right information, parents can advocate, affect change, and help their child’s medical team make important choices about pain management.
“At the end of Shawn’s life he couldn’t tell us about his pain. It’s imperative that all caregivers, including parents are confident in managing their child’s pain. The quality of Shawn’s life and even his death relied on this confidence.” – Sue
We are very excited to be joining forces with the Cancer Knowledge Network (the most widely read cancer education resource in North America), for a special parent-focused project about children’s cancer pain. With funding from the Canadian Cancer Society’s Knowledge to Action grant program, we will be tackling the problem of pain in children with cancer by developing and evaluating a social media campaign for parents called “Making Cancer Less Painful For Kids” (#KidsCancerPain).
Over the next 12 months, we will be sharing the very best, cutting-edge research about children’s cancer pain with parents – what causes it, how to assess it, how to treat it, common myths, and more! We will be sharing this information in a series of blogs, videos, images, Facebook posts, and Twitter chats, all posted and shared on CKN’s website and social media.
We will be studying the reach of the campaign and its impact on parents. We are proud to be part of a research team of internationally known health researchers and health professionals with expertise in pain, children’s cancer, knowledge translation, e-health, and communications. We are also very happy to be joined in this campaign by a number of other supporters and groups, including patients and families.
“You cannot experience watching your son suffer in that kind of pain without wanting/needing to do something to help change that for all kids.” – Patrick
We hope that the campaign will help children with cancer by making high quality evidence about their pain available online so parents can find, understand and use it. You can find our campaign content over the next 12 months by following our hashtag #KidsCancerPain. Together, we are going to be “Making Cancer Less Painful for Kids”.
Watch our first short video here!
Dr. Christine Chambers (@drcchambers) is the Canada Research Chair (Tier 1) in Children’s Pain and Professor in the Departments of Pediatrics and Psychology & Neuroscience at Dalhousie University. Dr. Chambers’ research lab is based in the Centre for Pediatric Pain Research at the IWK Health Centre. She studies the role of developmental, psychological, and social influences on children’s pain, with a current research focus on the role of families in pediatric pain and social media for health knowledge mobilization
Dr. Jennifer Stinson (@drjenstinson) is the Mary Jo Haddad Nursing Chair in Child Health, a Peter Lougheed CIHR New Investigator, Scientist (Child Health Evaluative Sciences) and Nurse Practitioner in the chronic pain program at the The Hospital for Sick Children, as well as an Associate Professor in the Faculty of Nursing at the University of Toronto. Her major clinical research interests are in the area of pain and symptom management and the use of e-health (internet) and m-health (mobile phones) technologies to improve the assessment and management of pain and other symptoms in children with chronic illnesses.
Special thanks to Patrick Sullivan and Sue McKechnie for their comments.