Healthcare Literacy – A Key to Success

Here's a real-life example: My 16-year old niece gave birth to her first child in January and the baby was a few weeks premature. She was sent home to her mom's house (my sister) with a "light blanket" because the baby was a bit jaundiced. This "blanket" has a cord attached to it that attaches to a motor that has a fan on the side of the casing. The fan helps keep the motor cool, and if the unit overheats the motor, it has a safety shut-off, which consequently STOPS the light treatment until the motor cools off.

Having been given very little instruction about the equipment, my sister and niece were left to set up this equipment on their own in my niece's room at home. Because of where the furniture was (bed, crib, etc.) it was most convenient to lay this motor casing box on its side which covered up the fan exhaust vent. So the machine cycled on and off as the motor overheated then cooled, etc.

It wasn't until a visiting nurse actually came to the house about 3 days later that she noticed the problem and explained how to fix it, "This needs to stand right-side up!" (Which way is "right-side up?"... without explicit instructions, we are only left to guess.)

So, as you can see.... FREQUENTLY, us family caregivers are given incomplete instructions with many assumptions about what is "common knowledge or common sense," without much thought given to what it was like when the INSTRUCTOR learned about this equipment/procedure for the very first time!

It is critical that we believe in ourselves and have confidence enough to say, "Wait a minute. I have a few questions!"

I know that sometimes we don't know what we don't know, and it is only after the fact that we discover that "steps" were left out or assumptions were made about how intuitive the process is for some people as they learn.... but, it bears conversation. With our medical professionals, with insurance companies who are loathe to reimburse for dialogue and conversation and Q&A sessions, with family members who share responsibility for providing the care for our loved ones, with our elected officials who establish policies and laws based on feedback from their constituents.

Thanks Suzanne! Keep up the good work.

David Ritter, CCANer from Pennsylvania

I absolutely agree.  My daughter was initially hooked up to respirator, heart monitor, feeding tube, IV in the ICU was wasn't expected to survive.  She came home 2 weeks later on 5 meds. and my husband and I didn't sleep the first night because we were afraid she'd stop breathing.  One of the first things I did was look in the Exceptional Parent resource guide (free at (800)E-PARENT) and called every organization on kidney disease.  This was in the days before the Internet and I racked up $700 worth of calls the first 10 months after she was born.  But I found getting the information helped us feel less helpless and hopeless once we knew what we were dealing with and what our options are.  Today I'd recommend using Google search but just make sure the source is reputable.