Do you have trouble understanding your doctor’s instructions, finding accurate health information, or working through health insurance forms? If so, you’re not alone.
“Nearly half of adults in the U.S. demonstrate limited health literacy skills,” says Michael Wolf, Ph.D., Director of the Center for Applied Health Research on Aging at the Feinberg School of Medicine at Northwestern University. “Nine out of 10 people may struggle with some aspect of navigating health information and services.”
What is health literacy?
The Health Resources & Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, defines health literacy as “the degree to which individuals can obtain, process, and understand basic health information needed to make appropriate health decisions.”
Helen Osborne, a health literacy consultant in Natick, Massachusetts, defines health literacy as “a shared responsibility between patients (or anyone receiving health information) and providers (anyone providing health information). Each must communicate in ways the other can understand.”
Why aren’t we health literate?
Several things can stand in the way of our lack of health proficiency. First, medical language can be confusing. Filling out forms and recalling your medical history can be difficult.
In addition, health and medical information are not always written in plain English and doctors may not speak to patients simply enough.
Physicians may not have time to explain things as well as you’d like. Keeping track of multiple medications may be confusing, as well.
Older adults and health literacy
Older adults are among the groups with low health literacy. “Adults, particularly those over seventy, have higher rates of limited health literacy,” Wolf says. “The confluence of greater healthcare needs in older age at a time when many of us are becoming somewhat cognitively compromised sets the stage for significant health literacy concerns.”
Older adults often have one or more chronic health conditions and because of this, they often need more care than when they were younger. “Similarly, the age-related cognitive decline also accelerates in our later years, impacting how quickly we can process information, recall instructions, and multitask,” Wolf adds.
Osborne cites factors that may affect how we understand health issues, like “an increased prevalence of disease, drug interactions, and declining abilities to see, hear, think, and remember.”
Likewise, aging adults may also “be facing life situations such as losing a spouse, moving from their home, or transitioning from being the caregiver of a family to now being cared for by their family.”
Health literacy skills
The U.S. Department of Health and Human Services (HHS) says health literature includes the following skills:
- Navigating healthcare systems
- Understanding prescription drug instructions and consent forms
- Following pre-surgery instructions
- Check a nutrition label to ensure an item is safe for someone with a food allergy
- Calculating the correct dose of a medicine, among others
“Health communication often requires more advanced skill sets, like understanding risks of a procedure or comparing two treatment options,” Wolf says. “Health literacy also entails communicating effectively to healthcare providers.”
Tips for patients
Osborne has some tips for patients in her book, “Health Literacy from A to Z: Practical Ways to Communicate Your Health Message”:
- Take note of your symptoms. That includes when they started, how often they occur, and what they feel like to you. It can help to describe symptoms using both words (such as describing pain as “achy” or “sharp”) and numbers.
- Invite family members or friends to act as advocates. This is extra important when anticipating difficult medical conversations.
- Overcome communication barriers. Wear your glasses, use needed hearing aids, and let providers know when you cannot understand important words, concepts, and instructions.
- Create your medical record. Again, you are the expert on yourself. It helps a lot to keep your records and be willing to share these when needed by others involved with your care.
Suzanne McCoy, 65, and her mother, Rafaela McCoy, 95, of Brooklyn, New York, work together on managing Rafaela’s medications and medical care.
Suzanne, a two-time breast cancer survivor, describes her health literacy as good. “I’m very good about bringing a list of questions to my doctors,” Suzanne says. “I always ask about the possible results of my tests and plan of action for each. As a result, I was much more health literate for my second bout of breast cancer at age 62 than during my first bout at 39.”
What did she do differently the second time? “I asked questions and wrote down the answers. Then, I joined cancer support groups to share information with others,” she explains.
“I did my research when I was prescribed anti-hormone medication,” Suzanne adds. She had adverse side effects from the medication and asked her doctor to prescribe the brand name drug, which her research indicated would cause fewer side effects.
She even found a pharmacy in another state with more affordable prices for the expensive drug.
Rafaela McCoy has several health issues, including high blood pressure, atrial fibrillation (a-fib), gastric concerns, anemia, and thyroid issues. “I can’t hear too well and have to rely on my daughter to be there or make or receive calls from doctors regarding medical issues and prescriptions,” she explains.
“Also, I take a lot of medicine, and it’s hard to keep track of them — some I take in the morning and some I can’t take too close together.”
The two have a system to keep track of medicines Rafaela has taken and which ones need to be taken. “My mom came up with a system,” Suzanne says. “She lines up the bottles on her table with the caps facing up, in the correct order of when to take each. Then, once she takes each medicine, she turns the bottle cap-down.”
Recently, two new medicines were added, bringing the total to eight, and one of the two has to be taken before the other. “I separated those two bottles and put them to the left of the other six because they’re the first ones she has to take in the morning,” says Suzanne.
Additional suggestions to improve health literacy
- Ask your doctor about tests, medicines, and medication side effects
- If you don’t understand what your doctor says or if they talk too fast, let them know
- Ask doctors to repeat information clearly and then repeat what you hear
- Bring a friend or relative to doctors’ appointments and ask them to take notes
- Every time you visit your doctor, bring your medications, including OTC (over-the-counter) ones
- Bring a list of questions to ask so you don’t forget during the visit
Brooklyn, New York writer Debbie L. Miller has been writing for NextAvenue.org since 2018.
This article is reprinted by permission from NextAvenue.org, © 2022 Twin Cities Public Television, Inc. All rights reserved.
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