Living with cancer blog

Health literacy critical in managing treatment

By Lonnie Fynskov, R.N. October 12, 2016

Many years ago I jokingly called myself technologically-challenged. My husband had a career in the computer industry and our young kids were comfortable using electronic devices, but my computer training was limited.

At that time, I didn't need to use computers for my job and I could always ask for my husband's help at home. That changed when health care switched to electronic charting and medical records. I found myself needing to understand new systems with their own vocabulary. Initially, it was hard to admit I didn't understand the instructions.

But as humbling as it was to ask those simple questions, I was more afraid of accidentally deleting, or not being able to find, important information. So I swallowed my pride and asked a lot of questions.

Health care is similar. It can be hard to understand important information. Providers may forget that the same words they use when talking with another provider may not be understood by you and your family.

Some providers may feel it's insulting to their patients if they use plain language. It can also be more challenging to explain a complex topic with everyday words. But everyone needs help understanding concepts and language outside their area of expertise.

So what do you do with information that is unfamiliar and hard to understand? Just like my fear of accidentally doing something horrible on the computer, it can be frightening to be uncertain of your healthcare instructions.

What happens if you don't understand a possible side effect of your treatment? Do you know when to call your healthcare team? Do you understand the type and stage of your cancer?

Health literacy is considered the ability to understand and act on the health education that's provided. Some of you are comfortable asking questions when you don't understand something, others are more hesitant.

Have you ever had a situation where you weren't confident you understood and could act on information you received? How did you respond? What worked or did not work? What could healthcare providers do to make it easier for you?

Please share your thoughts in the comments so we can continue to learn from each other.

Oct. 12, 2016