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How can I understand the medical jargon?
How can I understand the medical jargon?

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

 

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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 fullyunderstands 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 [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. 
  • Learn how to interpret test results, scans, and lab reports by asking a member of the medical team to explain them to you.
  • 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 [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 [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 as advised by this portal to find reliable, child-specific cancer resources.
     

To make the right decision can be a huge stressor. The decisions that one snow makes for one’s child may not only have an influence on  the child, but on the whole family going forward. 

Practical ways parents [caregivers] can cope.

  • Ask the medical team about side and long-term effects before you give consent to treatment. You cannot say yes to something you barely understand. Ask for clarity.
  • Breathe and get professional help to guide you to do the best possible thing for your child while protecting quality of life for the child and the family.
  • The uncertainty of wondering if you made the right decision, can be a huge stressor. After consulting with the medical team and when making an informed decision, trust yourself that you have done the right thing. Stressing about whether it was right or wrong won’t change anything but may have a negative effect on your health and mental well-being. Trust your decision-making.

 

When one starts to seek information, one may find conflicting or overwhelming resources.  Don’t stress, Childhood Cancer International (CCI) developed this knowledge portal to give non-conflicting and accurate information.  The resources that we refer to have been reviewed, researched and are easily accessible. As the latest trends develop and new research has been tested and tried, we will update the knowledge portal. 

Practical ways parents [caregivers] can cope. 

  • Childhood Cancer International (CCI) works in collaboration with the World Health Organisation (WHO) , St Jude Research Hospital, The International Society of Paediatric Oncology (SIOP) and other  professional organisations focussing on childhood cancer.  We use their technical expertise to review information and resources. 
  • CCI also works with over 200 members globally so that we can share best practices and trusted experiences on our different media and social media portals.
  • The internet can be helpful but frightening. We have added references, blogs, webinars and other information that you can read. (see Read More). 
  • Be careful when listening to relatives, friends and communities who want to offer unverified “cures” or advice. Do not use any “cure or remedy” before discussing it with your paediatric oncologist. The most innocuous remedy could interfere with the treatment and may have negative outcomes. 

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The medical jargon (language) of childhood cancer is difficult to understand and is complex.

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