Editor’s Note: Jenny is the mother of two children with special healthcare needs and a Patient & Family Advisor at her local children’s hospital. In addition to her lived experience, Jenny calls upon her professional experience as a social worker to help her write blogs from her home in Wisconsin. – Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics
Family Connections with Pediatrics
My son was just 9 months old when we learned about his severe peanut allergy. One nibble of a peanut butter snack bar sent us straight to the hospital, with our first visit to the allergist a few days later.
I remember walking out of the clinic that day, my head swimming with phrases like IgE antibodies, angioedema, anaphylactic shock, and epinephrine autoinjector. It all felt so scary and overwhelming. How would I explain this all to my son? How would I explain it to his friends, cousins, and classmates? How could I possibly keep my child safe if I barely understood what the doctor said myself?
In reality, most of our lives are not spent in a doctor’s office. We need language to talk to our children about their health care in a way that makes sense to them. This month’s Pediatrics speaks to this need in an article entitled “Children’s Understanding of Commonly Used Medical Terminology” (10.1542/peds.2024-067871).
What is medical terminology?
Medical terminology, or jargon, refers to words and phrases that are easily understood by healthcare providers but are more confusing and unclear for patients. Common types of medical jargon include:
- Technical names of diseases (e.g., “conjunctivitis” instead of “pink eye”)
- Acronyms and abbreviations (e.g., CBC, EKG, PCP, and IV)
- Words that are familiar but often misunderstood (e.g., “culture” or “febrile”)
- Words that have the opposite meaning when used in everyday life (e.g., “negative” test results)
- Using phrases that are too complex (e.g., “upper extremity” instead of “arm”)
- Using phrases that soften the message (e.g., “passed away” instead of “died”)
- Using phrases that feel judgmental (e.g., describing a patient as “non-compliant”)
How does medical jargon impact children?
The authors talked to 100 children, ages 4–12, at the Minnesota State Fair. They asked each child 11 questions about words and phrases they might hear in a medical setting. Responses to these questions showed that many children:
- Filter what they hear through their own lens
- Have scary or harmful ideas of medical concepts
- Did not understand the word or phrase or confused the meaning with something else
Despite these findings, the authors also found that children have an interest in learning and showed a lot of curiosity, motivation, and trust in their healthcare providers.
What can you do with this article?
- Share this article with your child’s doctor. Work together as a team to find useful metaphors or visual aids to help your child understand the medical concepts.
- Do not be afraid to speak up if you or your child do not understand something. You have a right to know what your child’s healthcare team is talking about. Your questions can also help your doctor learn to communicate more clearly with others in the future.
- If you are part of an advisory council for your children’s hospital, suggest this article as a topic for continuing education and training for staff and families.
- Advocate for additional research on communication strategies in health care. Future studies should center children’s voices and be done in partnership with families.
