Occupational Therapist Judy Morris has seen the signs of information overload with patients many times.
"There [are] piles of paperwork everywhere because [patients] get so inundated with it that they just don't even pay attention to it anymore," she says.
Morris and her team at
Disability Advocates of Kent County (DAKC) work in the homes of their patients, primarily seniors who live with a range of disabilities. Those disabilities can be a further hindrance to how individuals take in and process information from health care professionals.
"If they have an important piece of paper from their doctor, they might not even know where it is because they're getting a lot of information," Morris says. "It really is overkill. They may not even feel it's manageable anymore.”
In addition to the amount of paperwork, patients may struggle to read or comprehend the information being presented. “It may not be in a format that someone with low vision can see. A lot of people just aren't good readers or they may have a literacy problem," Morris says.
Literacy problems undeniably impact health literacy, a term which describes how well individuals can obtain, process and understand the basic health information needed to make healthy decisions in their own lives. There are significant challenges to health literacy among older adults, those on the lower end of the socioeconomic spectrum, as well as underrepresented and medically underserved populations.
These individuals may need help in navigating the health care system, understanding complex bills and medical forms, or finding necessary medical equipment that can't be purchased at a local store. They may not even speak the same language, making it even harder to get the care they or their loved ones may need.
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Judy Morris
When Morris or any other DAKC therapist enters the home of a patient, their primary focus is to make sure the patient is safe and comfortable. From there, the therapist can help the patient identify the important pieces of information and prioritize next steps.
"Let's get your medication list. Let's get it on the fridge. Let's get that piece of information where it needs to be," Morris says.
Another focus is on education, as many are apt to overestimate what Medicare or insurance will cover, leading to financial challenges later on.
"There are times when equipment would be covered and [patients] don't know," Morris says. "Some people just need a walker or a wheelchair but you can't just go to Walgreens and buy [it] — that has to go through a physical therapist or physician, using a prescription or recommendation of what works specifically for that person. We help them get a doctor's prescription to go through a vendor and get that piece of equipment."
Literacy and health
According to Wendy Falb, Ph.D., executive director of the
Literacy Center of West Michigan, illiteracy is a massive barrier to health care, and those who cannot understand basic health information can find themselves paying far more in health care costs than someone who better understands the resources available.
"Health literacy flies under the radar in terms of its impact in our community, but health outcomes and health care are impacted by low adult literacy and, because of that, it is a core pillar in general adult literacy," Falb says.
Even for native English speakers, simply navigating the health care system can be difficult. There is urgency required when a parent needs to find care for a sick child or an individual faces a health emergency or chronic illness. Low health literacy can add undue stress to these situations. Follow-up care can be even more difficult, as communication barriers put extra distance between health care facilities and the patients they are trying to reach.
To help reduce this barrier, programs at the Literacy Center of West Michigan take an integrated approach to English. The curriculum, tutoring programs and general English classes also contain health literacy resources.
"We hear all the time from our learners, 'Now I can talk to my doctor' or, 'Now I can advocate on behalf of my child or my aging parent to get them the resources that they need,'" says Carrie Roper, M.A. TESOL, integrated education and training coordinator for the Literacy Center.
The Literacy Center's family literacy program multiplies the learning impact through a two-generational approach, Falb says.
"By advancing the literacy of the parents, we are also advancing the literacy of the children by introducing literacy practices and connections to the school," Falb says. "The core element there has always been health literacy and how to talk to your child's doctor and everything else. It is a huge priority."
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Wendy Falb, Ph.D
Falb is excited about the potential of two projects focused on health literacy. One of the programs could involve multiple facilities across West Michigan. Falb says the Literacy Center, along with
Spectrum Health and
Metro Health - University of Michigan Health West, have been discussing a series of classes focused on navigating chronic illnesses.
"For instance, you get a diagnosis — a cancer diagnosis, diabetes, Parkinson's or whatever it might be — the hospital could create a class around all the terminology, language and conversations you might have to help you navigate that illness," Falb says.
Working with
Cherry Health and
Reach Out and Read, Falb and the Literacy Center are also discussing the potential of a health-specific family literacy class to enhance
well child checkups at Cherry Health for nonnative speaking families. The idea would be to equip staff with multilingual literature they could give to patients, paired with classes that help individuals understand how to talk to their doctor and what the concept of the well child checkup means.
"I think there are endless opportunities because the need is so acute," Falb says. "It drives me crazy that we put all these resources out there but they're only partial access because of the language barrier."
Language barriers
As supervisor for the
More Life Mas Vida program, part of Spectrum Health's
Healthier Communities, Gladys Pico-Gleason, RN, helps her patients overcome language barriers on a daily basis. Her program is focused on promoting healthy living and chronic disease prevention with an emphasis on diabetes and cardiovascular disease prevention in local Spanish-speaking and African-American communities, where both literacy and access to care are challenges.
“Many of the individuals in the program do not speak English and have not completed any schooling higher than high school,” Pico-Gleason says.
"There are a lot of things that are stacked against them as far as their ability to understand and to access information that will help them to have an optimal level of health and to be able to properly navigate the health care system," she says.
To overcome those challenges, Pico-Gleason's team starts with biometric screenings. A nurse measures the patient's blood sugar, cholesterol, blood pressure, height and weight, and then explains a bit more about the risk factors that may be present in those measurements and how they can be improved.
The nurse may ask the patient if they are aware of what cholesterol is, or if they know what foods HDL and LDL triglycerides come from and how they affect the body. Talking about blood sugar, the nurse will likely describe what insulin is and how it works in the body, what normal ranges are and what the patient can do in order to maintain a healthy range.
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"When someone goes to a doctor's office and they drop blood, they may get an email or a letter or a call saying, 'Everything's fine, you're good to go.' That obviously doesn't help those with low health literacy very much and it affects their understanding of the medications that they may be taking," Pico-Gleason says. "The moment that we do the biometric screening, we assess their level of understanding of what all of that means."
"Health literacy is really woven into every aspect of what our program does," she adds.
Before becoming supervisor, Pico-Gleason served as a nurse care manager for the More Life Mas Vida program, where she gained firsthand experience working with patients and helping them understand how to keep healthy choices in mind.
"Some of the most satisfying parts of our work are being able to see the light bulbs turn on in people's minds when they understand these things — because they're being explained in a way that they can understand."
Pico-Gleason holds that health education is a way of acknowledging a person's dignity. There can be a stigma, especially applied to immigrants, that those who don't speak English or who have lower levels of education also cannot understand how to make healthy decisions.
"To me, it is a matter of social justice. It's a matter of personal dignity to take the time to help someone understand," Pico-Gleason says. "The onus is on us, not just for personal health literacy but also institutional and organizational health literacy. Organizations have a responsibility to make sure that what they do, the educational materials that they offer, even how people can access those organizations, that they're set up in a way with universal precautions for health literacy, so that from the get go, you're being accessible to people who may have lower levels of health literacy."
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Gladys Pico-Gleason, RN
Overcoming pandemic pressure
Since the onset of the COVID-19 pandemic in early 2020, there has been an explosion in the demand for health care professionals. With new protocols to follow, in-home care workers have been especially hard to find.
"There are no caregivers to be had," Morris says. "There are people who are surviving without a caregiver who need a caregiver. They're just not available and I hear that almost daily. It's just that there isn't that workforce. I don't know. It's disappeared."
"Nurses and therapists are usually going into a home after a hospitalization or a significant medical event and Medicare has put significant limits on what therapists can do in the home," Morris says. "That's a total lack of service compared to maybe two years ago. Now it's all just limited because of how they changed the billing."
"Definitely, homebound people and low income folks really have felt the lack of caregivers and lack of Medicare support," Morris says. "They definitely feel that."
This is where the Literacy Center's programs and More Life Mas Vida are making a difference by supporting the development of future health care workers and health literacy where people need it most.
Some of the more advanced classes at the Literacy Center train students for certified nurse assistant, pharmacy technician and medical coding certifications. Roper says many of the adults coming to those programs "have prior experience in the health care field in their home countries, but often can't use the degrees or certifications they have earned in those countries to continue the trajectory of their career."
These skilled professionals can be further held back by the language barrier.
As the Literacy Center's grant funding doesn't cover bilingual instruction, participants in English classes may be cut off before they reach an intermediate or high level of language ability. Lower-level learners typically can't manage the technical language in the program — a significant barrier to following those career dreams.
"We saw this as a need for a bridge program for lower-level learners who are interested in those health care careers and want to bolster their vocabulary before taking a certification," Roper says.
The bridge program as well as other programs at the Literacy Center are focused on employment. Career fairs are held on-site regularly and learners typically walk away with multiple employment offers before they finish the class and receive certification, Roper says.
"These individuals are remarkable people who are so grateful and moved to be able to get this certification and these jobs," Falb says. "What's unbelievable about it is how much we need them and how much we need these people to be doing this job. It's really powerful work."
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Social distancing concerns that moved More Life Mas Vida classes into a hybrid format also exposed further knowledge gaps for the program's constituents. While promoting a healthier environment, hybrid classes put more space between practitioners and their patients. That's a problem the group is confronting with regular educational opportunities in the virtual space. More Life Mas Vida is launching an educational health education series March 22, in observance of National Nutrition Month, with an online class on cooking and healthy choices in Spanish.
One of the newer nurses who transferred to the More Life Mas Vida program from a COVID-19 floor, is helping bring down the high rates of COVID-19 infection while also increasing health literacy in the community with unique “Cov-Aid” kits that contain an at-home test, a pulse oximeter to measure oxygen, a thermometer, hand sanitizer, masks and information on how to use each of the items. The kits can be requested by calling the More Life Mas Vida’s main lines, (616) 391-8943 (English) and (616) 391-6199 (Spanish).
"This kit is meant as a way to teach people about symptoms of COVID and how they can use these tools to measure their symptoms in order to have a more informed conversation with their health care provider," Pico-Gleason says. "Some of those knowledge gaps are found right when people call up their doctor and they don't really know how to communicate. There can be a lot of misunderstandings and sometimes important things don't get communicated."
The More Life Mas Vida team is asking Cov-Aid kit recipients to complete a survey to see if they know what the symptoms of COVID-19 are and the appropriate way of reaching out to their doctor. Three months later, they will follow up with the same questions to see if health literacy has improved based on the information offered.
From the language we use to describe medical issues and inform others of their risks, to the services health care professionals use in homes, hospitals and classrooms, there will always be room for improvement when it comes to health literacy. This is why making health-based decisions easier for our most vulnerable and underserved populations could have the greatest long-term impact.
It's only with the help of local educators, health care professionals and those training to fill these roles that we will be able to see this impact.
Photos courtesy Kristina Bird, Bird + Bird Studio
This series is underwritten by Spectrum Health.
Matthew Russell is a writer and maker living in West Michigan. Matthew has over 20 years of experience as a journalist for various newspapers and magazines in the Midwest, has been published in two books about Grand Rapids history, and is currently improving his skills as an amateur apiarist while building a sustainable microfarm.