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Parents often find it difficult to understand medical language
Parents often find it difficult to understand medical language

Parents often find it difficult to understand medical language

1. The medical jargon (language) of childhood cancer is difficult to understand and is  complex. Family and community members will ask one 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 [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.

2. 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 one 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. 

3. 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. 

4. 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.  

5. When one starts to seek for 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 new 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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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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