Article from the Boston Globe’s On Call Magazine, April 2004
By Helen Osborne, M.Ed., OTR/L
President of Health Literacy Consulting
Archie Willard is an adult learner who learned to read when he was 54 years old. Although he was always good at solving problems and making decisions, Willard struggled with reading and spelling. He worked for many years at a meat packing plant in a job which didn’t require any reading. When the plant closed, he was offered a job as an insurance adjustor which meant he needed to learn to read, spell, and fill out insurance forms.
About this time, Willard’s wife read an article about Bruce Jenner. The article wasn’t about Jenner’s athletic successes, however. It was about his dyslexia. Willard thought Jenner’s story sounded a lot like his own, although he hadn’t heard the term “dyslexia” before. He went for testing and, indeed, was diagnosed with two types of dyslexia. Willard explains that his reading difficulties are due to brain processing problems which make it hard for him to blend sounds together to make words and also cause “motor-clumsy disorder” which affects his fine motor skills. Willard’s testing also showed that he is of above average intelligence and not “stupid” like some of his teachers had said.
Once aware of his problem, Willard went for help at a local literacy program where he worked one-to-one with a tutor twice weekly for two and a half years. He went from reading at a fourth grade level to being able to fill out job-related insurance forms and reading newspapers and most other “items that are not complicated.” In fact, after his second career as an insurance adjustor, Willard became a literacy coordinator at Iowa Central Community College in Fort Dodge, Iowa where he was a student.
Willard knows firsthand how difficult life can be when people cannot read, or read well. He is particularly sensitive to how literacy difficulties impact healthcare. A well-known and well-respected “health literacy advocate,” Willard shares tips that health providers can use to better communicate with all patients — including those who have limited literacy skills.
Allow time to get to know each other. Willard says that he finds it usually takes him two to three visits to “bond” with new health providers. From his perspective, one of the most important ways providers can help patients feel more at ease is to spend a few minutes at the beginning of appointments getting to know each other. Willard said that when providers talk about situations they’ve found difficult, he’s generally much more willing to discuss his struggles with reading.
Be sensitive to patient’s feelings of shame or fear. Willard says that people often try to keep their illiteracy a secret from most everyone, including health providers. This means they might answer “no” to all health history questions so as to not get any follow-up questions. “People who cannot read, or cannot read well, have been hurt real bad,” says Willard. “There’s always fear in the back of your mind that you’ll be asked to read.”
Make a conscious effort to learn if patients can read. Within the health literacy community, there is active discussion about whether to formally and routinely test all patients for literacy. Although literacy tests like the REALM (Rapid Estimate of Adult Literacy in Medicine) and TOFHLA (Test of Functional Health Literacy) are common and well-regarded research tools, Willard and many other health literacy advocates do not think that this is a good idea. “As a dyslexic and an adult learner with reading problems, I speak for many other adult learners. We hate having to take another written literacy test. People with other kinds of handicaps are not continually asked to expose their weaknesses to whatever degree they are handicapped. There is no physical pain in taking a written test, but when we have to go back and take a written test there is a lot of frustration inside each of us. We grew up feeling humiliated because we had poor literacy skills and now we are adults. More written tests are seen as another step backward for us and it turns us away.”
Instead of formal literacy testing, Willard recommends that providers develop questions “that people like myself are comfortable with and that gives professionals the information they need to know.” These questions can be along the lines of “Do you like to learn by watching TV, listening to the radio, talking with people, trying it yourself, or reading?”
It’s also important to notice “red flags” of reading problems, such as when patients:
- Take extra time or have a lot of misspelled words when they fill out forms
- Always bring other people to help with reading tasks
- Ask many questions about what providers say or give them to read
- Have “terrible” handwriting. Willard shares that the “motor-clumsy” part of his dyslexia causes him to press down so hard on paper that “you can almost trace the pencil marks on the next page.”
Don’t avoid written materials just because patients have trouble reading. Even those who struggle may better comprehend when they are relaxed and have sufficient time. Also, patients might share written materials with others who can more easily understand. To reach a wide audience, Willard recommends that health materials be written at a sixth grade reading level. Don’t avoid necessary medical words like “chemotherapy” and “bronchodilator” just because they are difficult. Instead, define them and give examples. And, when possible, use simpler words (sometimes referred to as “living room language”) like “show” instead of “demonstrate.”
In addition to written materials, communicate your health message in non-written media such as audio tapes, pictures, and objects. Even though Willard can read the word “beans,” he says he still recognizes which canned vegetables to buy by looking at the can’s color, not label. “We go back to old habits – that’s how we’ve lived our life.
Assess what patients are getting and not getting. Make sure patients understand the information you are communicating. You can do this by asking them to restate, in their own words, what you just said or asked them to do. A way that does NOT work well is to ask patients, “Do you understand?” Readers and nonreaders alike often respond by simply nodding “yes.”
Be conscious of individual strategies. Adult learners, like everyone else, find strategies to navigate the healthcare system. This may be recognizing their medicines by shape and color, not prescription label. Problems can arise, however, when generic drugs change or are packaged differently. Another strategy that Willard says many “successful dyslexics” use is having strong support systems of people they can go to, confide in, and feel comfortable sharing that they cannot read. Providers can help by accepting, not challenging or trying to change, the strategies that adult learners find successful. If and when these strategies fail, however, providers should help adult learners come up with new alternatives.
Admittedly, it is hard for providers to always know the best way to communicate – especially with patients who are poor readers. To improve this situation, Willard recommends that providers and adult learners get to know each other better. “The medical field should partner with adult learners to listen to one another and look for answers together,” he says.
How to Find Out More
- Baker D, Williams M, Parker R, Gazmarian J, Nurss J. “Development of a brief test to measure functional health literacy.” Patient Education and Counseling. 38, (1999) 33-42.
- Davis T, Long S, Jackson R, Mayeaux E, George R, Murphy P, Crouch M: “Rapid Estimate of Adult Literacy In Medicine: A Shortened Screening Instrument.” Clinical Research and Methods. (1993) Vol. 25, No. 5, 391-395.