A View from Another Side of the Waiting Room
By Lisa Gualtieri, Ph.D, Sc.M. - as told to Michelle Badash
Boston, Massachusetts
Helping a Cambodian refugee through cancer was my first – and lasting – impression about the importance of health literacy
My health literacy revelation came while I was a patient advocate for a Cambodian refugee who had cancer. Although his English was good, he was not used to navigating the American medical system. I won’t go into the details of his health condition; just that I took him and his wife to his doctor’s appointments. I knew that they were very scared and wanted to do anything I could to help.
Since I did not know a lot about cancer and had never been in the position of communicating health information for someone else, I asked the doctor questions: Can we see the test results? What does this difference from the last test means? What are the other treatment options?
During the appointments, I encouraged him to talk about his symptoms and medication side effects and asked the doctor about test results and treatment options until I understood them. I always made sure the couple were following and checked to see if they had other questions. While all three of us liked and trusted the doctor, I noticed that they had a more passive attitude and didn’t know how much of that was due to trusting the doctor, fear, personality, or culture.
What struck me was that on the drive home, and even weeks after a meeting with the doctor, they would ask me questions that we had already discussed with the doctor. Although we had all been there together, they had apparently not retained the information the way I had.
This was my introduction to health literacy. I began to recognize how the emotional impact of disease and treatment can limit a patient’s comprehension and retention.
Because I was working professionally in the field of online consumer health, I was starting to read about comprehension and retention of health information, immediately finding out that this was referred to as health literacy. The experience of working with the Cambodian family opened my eyes to the importance of health literacy skills. I learned to incorporate this in both my work and my family life.
Today, health literacy is part of my courses and an important component of what I do professionally. And, when I go to the doctor for myself or one of my children, I always ask the doctor to write out the information for me, so I can refer to it later. I know that when I’m feeling overwhelmed and exhausted, or scared, it’s likely that my own retention of information will be limited.
And one final note about my Cambodian friend: I am glad to say that he is still doing well today.
Dr. Lisa Gualtieri is an Adjunct Clinical Professor in Public Health and Community Medicine at Tufts University School of Medicine. She is the Editor-in-Chief of eLearn Magazine and writes a blog on health and a blog on education. She can be reached at lisa@acm.org.
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