How can I understand the medical jargon?
Parents often find it difficult to understand medical language used by doctors and healthcare providers during their child’s cancer journey.
The medical jargon (language) of childhood cancer is difficult to understand and is complex. Family and community members will ask questions, and the correct knowledge will eliminate false information and misconceptions. It is imperative that a parent/caregiver fully understands the child’s medical condition and treatment. Knowledge of staff who constitute the medical team as well as finding one’s way around the hospital will help one’s confidence and will assist one to make informed decisions without stress.
Practical ways parents and caregivers can cope:
Try to understand the complex medical terms such as chemotherapy, (a drug treatment that uses powerful chemicals to kill fast-growing cancer cells), neutropenia (a deficiency of neutrophils - type of white blood cells that are crucial for fighting infections - which can be caused through chemotherapy), remission (symptoms of cancer lessen or go away for a period of time), protocols (a detailed, written plan for a medical treatment), and other terms that you hear about your child’s treatment. Get an app or have a little notebook on hand for easy access to write down questions you may have for the medical teams. Summarise your understanding in your own words.
Always ask a member of the medical team to explain to you the interpretation of test results, scans, and lab reports.
Try to understand the difference between terms such as treatment side effects, late effects, and complications. Side effects are unwanted or unexpected problems that occur during treatment or shortly after it while late effects are health problems that appear months or years after cancer treatment has ended. Complications are unintended medical conditions that make treatment or recovery more difficult. They are often more serious than regular side effects and may require additional medical attention or intervention.
One may feel uncertain and stressed about the overload of information and uncertain of what and who to trust. This Knowledge Portal hopes to give practical information from experience and resources that are available on open source, easy to find and that have been selected and reviewed to be trusted.
Practical ways parents and caregivers can cope:
Familiarise yourself with the treatment phases of your child. Ask the medical team to explain them to you and don’t be scared to ask. You have a right to these answers so that you can prepare yourself, your child and your family on what to expect and when to expect it.
Ask for clear timelines. Your child may react differently to treatment than expected and may throw you and the medical team curve balls. Trust the medical team and ask direct questions.
Sometimes it may feel as though you get mixed messages from different healthcare professionals. Find a member of the medical team that you trust and don’t listen to passage talk.
Gaps in information may cause stress especially if one has to make decisions or answer questions. This may lead to more confusion and uncertainty.
Practical ways parents and caregivers can cope:
Discuss gaps in the information or a lack of enough and or clear information that was given to you by the medical team. Talk to the doctor, social worker or a trusted member of the medical team on how this influences you to make correct and informed decisions. Ask them to guide and support you.
Learn more about long-term effects, fertility, or survivorship so that you can prepare yourself for the journey ahead.
Use trusted and reliable resources to get information, as advised by this portal to find reliable, child-specific cancer resources.
If you would like to read more, below are a few articles and resources that we like:
Anne Kastel, et.al. Sept 2011. Parents’ views on information in childhood cancer care. ScienceDirect.
OB Eden, et.al. 1994. Communication with parents of children with cancer. Palliative Medicine. 1994; 8:105 114.
J.W. Mack, et.al. 2006. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. Journal of Oncology. 2006; 24:5265-5270.
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