Children with neuroblastoma (NBL) and their family members face major challenges whilst undergoing treatment for cancer. Some of the critical challenges the caregivers face include coping with the pain of NBL treatment, emotional side effects of NBL and the financial burdens of NBL treatment.
Children with neuroblastoma (NBL) and their family members face major challenges whilst undergoing treatment for cancer. Some of the common difficulties faced by the patients due to NBL treatment includes coping with the treatment of cancer, emotional and mental aspects of cancer treatment, and the financial burden of cancer treatment.
Coping with the pain of NBL and the associated treatment
Children diagnosed with NBL and their family members can have social and emotional consequences after being diagnosed with cancer. This can include overcoming various emotions, such as anxiety, depression, anger, or managing stress levels. Sometimes it gets difficult for the family members to express their feelings towards a loved one1.
Children with verbal expression use direct words to express pain, which is the most visible way to warn caregivers. Caregivers assess the child’s pain using the child’s verbal expressions and behavioural responses. Behavioural observation includes scenarios where children cry due to pain, decreased physical activity, and sleeping problems. Some nonverbal or immature children engage in harmful behaviours such as scratching, tearing, biting, and fighting. Persistent pain can make some children introverted and dependent. Sometimes caregivers are unaware of the extent of the child’s suffering because they cannot communicate with the caregiver. Occasionally, children with NBL lose all strength and become weak throughout the body, which can further cause trauma for the caregivers. It has also been observed that muscle and tendon stiffness and pain frequently occur during normal development in children because muscle and tendon growth does not accompany rapidly growing organs and bones. Some children with NBL and bone metastases also experience pain in the extremities. As a result, caregivers and health care providers often misinterpret symptoms as growing pains2.
Coping with Mental/Emotional side effects of NBL
Diagnosis of a malignant tumor often leads to a family crisis, which changes on several levels. Most families experience shock and distress in the early stages. The central focus of life begins to revolve around the child to accommodate the child’s needs. The lifestyle of the family is being adjusted.
In addition to the stress of coping with the child’s physical discomfort, the primary caregiver has to also address the fear of losing the child. Religious support, comfort, and spiritual listening may help parents take care of their children2.
Coping with the financial burden of NBL
“Financial toxicity” has become a well-known term in the discussion of cancer drugs and treatment. The rising medication prices, health insurance costs, and other disease management expenses of NBL in recent decades have been a rising problem for the family members and caregivers of NBL patients1.
- 1.Zizinia S. Life After Cancer. Social & Emotional Impacts of Cancer. MD Anderson Cancer Center. Published 2022. Accessed March 2022. https://www.mdanderson.org/patients-family/life-after-cancer/social-emotional-impacts.html
- 2.Lu C, Huang C, Park J, Lin H, Lee Y, Cheng S. Main caregivers’ experiences of managing pain for children with neuroblastoma in Taiwan. J Pediatr Oncol Nurs. 2011;28(6):326-335. doi:10.1177/1043454211408104