Pain in children with cancer: myths, management, and the family context

This week’s EBN Twitter Chat on Wednesday 7th June 2017 between 8-9 pm (UK time) will focus on pain in children with cancer and is being hosted by Roses Parker (, PhD student in Children’s Nursing, London South Bank University @Roses_Parker and Perri Tutelman (, PhD student in Clinical Psychology, Dalhousie University Twitter @PerriTutelman.

Participating in the chat requires a Twitter account. If you do not have one you can create an account at Once you have an account, contributing is straightforward. You can follow the discussion by searching links to #ebnjc. You can contribute by sending a tweet (tweets are text messages limited to 140 characters) and adding #ebnjc (the EBN Twitter chat hash tag) to your tweet.

Each year, over 300,000 children are diagnosed with cancer worldwide (Steliarova-Foucher, 2017). With an increasing amount of research on pediatric cancer, greater consideration is now being given to the symptoms and side effects associated with the disease, in addition to the cancer itself. Pain is one of the most common and burdensome symptoms of pediatric cancer according to both children and their parents (Miller, Jacob & Hockenberry, 2011; Poder, Ljungman & Essen, 2010). Evidence suggests pain affects children with cancer regardless of their age, gender or diagnosis and continues throughout the cancer journey (Twycross et al., 2015). Children with cancer experience pain from three main sources. Firstly, cancer itself causes pain when tumour affects bones or soft tissue (Oakes, 2011). Secondly, children with cancer undergo many painful procedures such as lumbar punctures, bone marrow aspirates and surgery (Cline et al., 2006; Walco et al., 2005). Finally, increasingly aggressive treatments, such as chemotherapy and radiotherapy, have painful side-effects such as mucositis, peripheral neuropathy, and burns (World Health Organisation, 2012). Evidence suggests pain affects children with cancer regardless of their age, gender or diagnosis throughout the cancer journey (Twycross et al., 2015), and can have a significant impact on the lives of children and their families. Unfortunately, while various pain management strategies exist to manage children’s cancer-related pain (e.g. medications, psychological and physical pain management techniques), pain continues to be a problem for the majority of children with cancer.

Due to changes in oncology care models, many children with cancer are spending less time in the hospital, and instead are being cared for primarily by their parents at home on an outpatient basis (Fortier et al., 2014). The responsibility for assessing and treating children’s cancer pain at home can be overwhelming for parents, and may be complicated by common attitudinal barriers and misconceptions about pain and pain management. For instance, research in the area of postoperative pain management has found that parents often avoid pain medications for fear of addiction and tolerance, and see analgesics as a last resort. One study by Fortier and colleagues found emerging evidence for similar beliefs about pain in parents of children with cancer (Fortier et al., 2014). Parents and children may also have cancer-specific misconceptions about pain such as the belief that pain is an inevitable part of cancer (Ameringer et al., 2006) and misconceptions around the use of acetaminophen (paracetamol).

This Twitter chat will explore some emerging issues on the topic of pain in children with cancer and ways in which health care professionals can help support children and parents overcome barriers to pain management so that children with cancer can receive the best possible pain care. Below are some of the questions that will be discussed in the Twitter chat.

  1. In what ways does unmanaged pain impact children with cancer and their families?
  2. What pain strategies are helpful for children with cancer to manage pain during treatments, procedures and in their day-to-day lives?
  3. What do you feel are the main barriers that children with cancer and their families face in terms of pain management?
  4. Many people hold misconceptions about pain. What are some common myths parents and children have about children’s cancer pain?
  5. Parents play a key role in managing their children’s cancer pain. How can HCPs support parents so that they feel confident doing so?


Ameringer, S., Serlin, R. C., Hughes, S. H., Frierdich, S. A., & Ward, S. (2006). Concerns about pain management among adolescents with cancer: developing the Adolescent Barriers Questionnaire. Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses, 23(4), pp. 220–232.

Cline, R. J., Harper, F. W., Penner, L. A., Peterson, A. M., Taub, J. W. and Albrecht, T. L. (2006) Parent communication and child pain and distress during painful pediatric cancer treatments, Social Science & Medicine, 63 (4), pp. 883–898.

Fortier, M. A., Wahi, A., Bruce, C., Maurer, E. L. and Stevenson, R. (2014) Pain management at home in children with cancer: A daily diary study, Pediatric Blood & Cancer, 61 (6), pp. 1029–1033.

Kankkunen, P., Vehviläinen-Julkunen, K., Pietilä, A., Kokki, H. and Halonen, P. (2003) Parents’ perceptions and use of analgesics at home after children’s day surgery, Paediatric Anaesthesia, 13 (2), pp. 132–140.

Miller, E., Jacob, E., & Hockenberry, M. J. (2011). Nausea, pain, fatigue, and multiple symptoms in hospitalized children with cancer. Oncology Nursing Forum, 38(5), E382-393.

NICE (2012) Neutropenic sepsis: prevention and management in people with cancer. Available from: [Accessed 23 May 2017].

Oakes, L. L. (2011) Compact clinical guide to infant and child pain management: An evidence-based approach for nurses. New York, NY, US: Springer Publishing Co.

Pöder, U., Ljungman, G., & von Essen, L. (2010). Parents’ perceptions of their children’s cancer-related symptoms during treatment: a prospective, longitudinal study. Journal of Pain and Symptom Management, 40(5), pp. 661–670.

Steliarova-Foucher E, Colombet M, Ries LAG, Hesseling P, Moreno F, Shin HY, Stiller CA, editors (2017). International Incidence of Childhood Cancer, Volume III (electronic version). Lyon, France: International Agency for Research on Cancer. Available from: [Accessed 27 May 2017].

Twycross, A., Parker, R., Williams, A. and Gibson, F. (2015) Cancer-Related Pain and Pain Management Sources, Prevalence, and the Experiences of Children and Parents, Journal of Pediatric Oncology Nursing, 32 (6), pp. 369–384.

Walco, G. A., Conte, P. M., Labay, L. E., Engel, R. and Zeltzer, L. K. (2005) Procedural distress in children with cancer: Self-report, behavioral observations, and physiological parameters, The Clinical Journal of Pain, 21 (6), pp. 484–490.

World Health Organisation (2012) WHO | WHO guidelines on persisting pain in children, WHO. Available from: [Accessed 28 January 2016].


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