Jan 01, 2011
By Laura Eggertson

Health literacy: More than just the three Rs

When she chose a career in public health nursing, Liz Thompson never thought she would also need to be a teacher, an actor and an artist. But teaching, role-playing and drawing are skills the registered nurse relies on every day to communicate with patients whose literacy levels might otherwise prevent them from understanding her instructions.

Thompson works for the Prince Albert Parkland Health Region in north central Saskatchewan. She knows that anyone, whatever their level of education, may at some time struggle to grasp health information. According to the Canadian Council on Learning (CCL), 60 per cent of adult Canadians lack the capacity to obtain, understand and act upon health information and services and to make appropriate health decisions and maintain basic health. Figures from the Canadian Public Health Association (CPHA) show that for people over the age of 65, the percentage is even higher, at up to 88 per cent. CPHA also indicates that, by comparison, about 48 per cent of adult Canadians have low basic literacy skills — the ability to read and write.

Navigating the system with a blindfold on

When Barbara Kennedy nearly died after she took too many muscle relaxants and passed out in her bathtub, she knew she had to find help for the problem that caused her to overdose: her inability to read.

“I didn’t understand the instructions,” she explains. “I had a prescription given to me by my family doctor — who I’ve had for about 30 years — and he didn’t give me a verbal explanation about the dosage and possible side effects.”

Kennedy survived only because her husband found her. “He came into the bathroom because the people downstairs heard water running and called to let us know.”

Kennedy, 51, has always had trouble reading. She couldn’t fill out the forms necessary to apply for jobs. She got lost riding the bus if she couldn’t see familiar landmarks. She had trouble reading recipes and worried about how well she was feeding her children. In addition, she didn’t always understand what doctors or nurses told her about her husband’s epilepsy.

Often, Kennedy didn’t speak out because she was ashamed of being unable to read. She memorized whatever she could and followed verbal instructions. When her husband had a grand mal seizure, “I didn’t know how to spell seizure, but I knew what to do,” she says.

But when her husband was taken to an unfamiliar hospital following one seizure, she couldn’t read the sign directing her to the emergency department.

For Kennedy, navigating the health-care system is “like I’m going in with a blindfold on.” She has particular difficulty in a walk-in clinic or hospital. The doctors and nurses aren’t familiar with her situation and assume she can read the written instructions they hand her, and they don’t take the time to explain them.

After she accidentally overdosed, Kennedy set out to find a literacy program that would help her. For the past three years, she has been attending the Davenport-Perth Neighbourhood Centre’s adult literacy program in Toronto, and she can now distinguish letters and read street signs, simple stories and recipes. But she still has trouble with medical terminology, and she urges nurses and other health-care providers to remember that disabilities such as hers may not be visible but are real factors that affect health. “We might look really good on the outside, but on the inside, we’re helpless.”

Health literacy emerged as a critical issue in Canada in the 1990s and early 2000s, when researchers linked it to patient safety and identified it as an important determinant of overall health.

Nurses like Thompson have been at the forefront of researching ways to improve low health literacy and to develop practices that help patients dismantle this barrier to better health. Nurses have always instinctively understood what academics have since defined — that health literacy is distinct from basic literacy, although the two may be connected.

“When people raised it as an issue, it was nurses who took it up and said, ‘Oh yes, we see that every day,’” says Linda Shohet, executive director of the Centre for Literacy of Quebec and a leader in the health literacy field.

To be considered literate when it comes to health, people must be able to read and act upon often complicated written health information, to communicate their needs to health professionals and to understand health instructions. Even people who can read and write well may not understand medical information, depending on the context in which it is presented to them and their stress or anxiety levels at the time of receiving it, says Shohet.

“Today, literacy is looked at as a continuum of skills that people have for finding and using information in particular contexts, as opposed to past definitions that say, ‘Either you are or you aren’t literate,’” explains Shohet, who was also a member of the Expert Panel on Health Literacy, convened by CPHA in 2006 to examine the state of health literacy in Canada and recommend policy options to improve it.

Within the health-care system, nurses are often the first point of contact for new immigrants, people with learning disabilities or acquired brain injuries (including strokes), people with little formal education and well-educated people overcome by the stress of their situation. As a front-line nurse, Thompson knows that the health literacy levels of these people are not immediately or always visible. So she aims for a “universal precautions” approach to talking to her clients: she communicates information in clear, easy to understand words, delivered in a format everyone can understand. This way, she avoids stigmatizing anyone who is ashamed of their low literacy, because she treats everyone the same.

That’s where drawing, teaching and role-playing come in. It’s not unusual for Thompson to grab a paper towel or piece of paper and a marker to sketch a thermometer, with a line indicating the temperature at which a parent should give a child acetaminophen. She draws clocks to indicate the intervals at which a client should take medication. She also uses word pictures to convey her messages — like comparing an umbilical cord to a highway that takes nutrition and oxygen to the fetus and removes waste products.

“It’s easy to get caught up in ‘Oh, the person can’t read well, or they can’t write well,’” Thompson says. “Focusing on their strengths can guide you in the best way to help them.”

That’s exactly what she did with a couple in their 80s who needed to manage diabetes but were scared and confused by the need for daily injections. The woman had experienced a debilitating stroke, so Thompson, then a home care nurse, taught the husband to administer the insulin. Thompson broke the process into small steps and then used a technique known as “teach back.” First, she had the husband watch her prepare the insulin and ask questions. Then she had him show her that he knew how to do it.

“The goal was to keep them as independent as possible, with some support,” Thompson says. These health literacy strategies helped the couple to stay in their home for another two years.

It’s important for health professionals to be aware of their patients’ level of health literacy, says Sheila Sears. Sears is a registered nurse and director of public health and primary health care at the Guysborough Antigonish Strait Health Authority in Antigonish, N.S. The health authority was, she says, among the first in Canada to adopt a health literacy policy.

Staff training at the health authority includes coaching on how to judge literacy skills based on clients’ behaviour. For example, they may do the following:

  • frequently miss appointments
  • arrive for appointments without completed forms
  • avoid referring to written information they have received
  • bring family members to appointments as surrogate readers
  • claim to have vision problems (or to have forgotten their glasses) to avoid reading
  • ignore or misunderstand advice or instructions

A language barrier to health

When Tsige Lijam arrived in St. John’s, after nearly 10 years in an overcrowded refugee camp in Zimbabwe, she had more to cope with than just the frigid Canadian climate. The single mother, who spoke little English, also had a tumour on her ovary that earlier had been misdiagnosed as a stomach ulcer.

Lijam, now 44, was fortunate to have the help of an interpreter when she found a family doctor, who referred her to the Health Sciences Centre. Sometimes, she brought along her 15-year-old daughter to help with the language barrier. “I didn’t understand about the medicine — I didn’t understand anything,” she says of her initial experience.

Although having an interpreter or her daughter was helpful, Lijam couldn’t comprehend what the nurses and doctors were saying when they stood by her bedside, especially when she was recovering from the surgery to have her tumour removed. “Because they talk fast — they cut off the words.”

The tumour was benign, but Lijam remembers how traumatic that hospital stay was and the fear that made it worse. “I was very, very scared. I thought I was going to die.”

It wasn’t until the nurses and doctors recognized her difficulty comprehending English and took the time to sit with her and speak slowly that she understood. Their efforts made a stressful time better, she says.
Lijam particularly appreciates the attention she received from the surgeon. “She was very good. She made me understand; she made me not scared. The nurse was also good.”

Today, Lijam, who is originally from Eritrea, doesn’t need an interpreter when she sees her family doctor, and she ensures that the doctor spends the time necessary to explain any medication she has to take and to discuss the possible side effects.

“Very often you can pick up cues,” says Sears.

Shohet and Sears want nurses to understand that low literacy can affect their patients’ health and well-being in many ways, including the ability to get a job; to access the health-care system, public transportation and affordable housing; to read nutritional labels; and to comply with public health directives. Basic literacy has not declined, Shohet says, but the demands on people to understand health information have increased. The way that it is presented, through acronyms, complicated words and medical terminology, combined with health-care system pressures that leave providers with less time to spend with patients, is creating a greater gap between information and understanding.

In Antigonish, Sears says, one result of adopting a health literacy policy is that all of the health-care institutions in the region are conducting periodic literacy audits, based on a toolkit developed by Literacy Alberta. Staff members use the audit tool to see if their reception areas are clearly marked and easy to find; if personnel are welcoming; if their forms are easy to read and understand; and if the organization’s name and symbol are clearly displayed on all buildings.

The health authority also makes sure that its staff members are sensitive to clients’ needs and check that clients understand the information they are given. In one innovative staff training method, actors from a local theatre group were hired to act out vignettes that showed three generations of family members struggling with limited literacy and the effects on the family’s overall health.

“People were shocked at how complicated our system is for so many people,” says Sears. “They were shocked at how ashamed people are and how they try to hide it. I don’t think anyone could have left the presentation without being moved in some way or recognizing someone they had served.”

Six months later, 69 per cent of staff who saw the drama presentation had changed their behaviour. They began reading material such as medication information, test preparation instructions and consent forms out loud to patients and using teach-back methods. The health authority has also created teaching brochures, written in plain language, for patients to use in discussing their condition with nurses and other providers.

Although Sears does not have any hard data on whether these efforts to respond to literacy issues have improved patient care, she believes they have. “We hear people say things like, ‘You know, I’ve had angina for 10 years, and I never really knew until now what that meant and what I was supposed to do.’”

There is considerable evidence that people with low literacy skills have poorer health outcomes, says Irving Rootman, an adjunct professor at the University of Victoria and co-chair of the CPHA Expert Panel on Health Literacy. People in this group tend to put off going to physicians longer after illness sets in than do other people, and they have longer hospitalizations. In fact, low health literacy is a strong predictor of premature death, exceeded only by smoking, says Rootman. This may be because difficulty understanding medication instructions can lead to fatal accidents and health complications.

According to Rootman, those concerns, along with statistics published by organizations such as CCL on the prevalence of low health literacy, “have led many of the professional associations to sit up and take notice and start to deal with it.”

The effect of health literacy on patient safety was one of the guiding principles behind It’s Safe to Ask, a campaign launched by the Manitoba Institute for Patient Safety in 2007 to encourage the public to ask questions and become health advocates for themselves and their loved ones.

“Health literacy is a patient safety issue, because if you aren’t getting the information you need in order to make decisions, you could put both yourself and the providers at risk,” says Laurie Thompson, the institute’s executive director. “We want to promote self-care by stressing to patients that they are integral to their own care and are a resource for health providers.”

The ongoing campaign also addresses safe use of medication and promotes the use of a special card, listing medications that people can put in their wallets to take to appointments and hospital visits or post on their fridges. Paramedics entering a home in response to a call are trained to look on the fridge for the list.

In May 2008, the institute launched another initiative called Patient Safety Is in YOUR Hand, to encourage health-care providers to eliminate abbreviations, jargon, ambiguous medical terms and bad handwriting in any communications involving patients. As part of the campaign, the College of Registered Nurses of Manitoba, the College of Registered Psychiatric Nurses of Manitoba and the Manitoba Pharmaceutical Association distributed to their members a pocket-sized list of abbreviations to avoid.

Thompson believes that health-care providers need to become more aware of the importance of considering health literacy in all of their activities. One initiative that introduces providers to the concept of health literacy is an online learning module being developed by a group of partners, including CPHA, CNA, the Canadian Medical Association (CMA), the Canadian Patient Safety Institute and the Canadian Pharmacists Association. Content for the learning module was created by the Centre for Literacy of Quebec. “We were proud to have been involved in the initiative, which is a first in Canada,” says Shohet. The module will be launched on the CMA website and on CNA’s NurseONE.

Health emergency put RN out of her depth

Connie Davis has a master’s degree in nursing, but in the summer of 1986, when her son Alex was nine months old, the registered nurse learned what it was like to be unable to understand complicated medical information.

Davis was camping on San Juan Island in the Pacific Northwest’s Salish Sea when Alex suffered his first asthma attack.

Davis needed to decide where to take her son for help. She wasn’t sure what was causing his breathing difficulties, which turned out to have been complicated by pneumonia. “I was being asked to make decisions that I was really uninformed about,” she remembers.

Davis took Alex to a nearby fire station, where local firefighters were gathered for a weekend event. They quickly assessed Alex.

“I know health-care stuff, but I couldn’t take in what they were telling me,” says Davis. “My anxiety level was too high. We were out of our familiar environment. I couldn’t cope.”

Fortunately, the firefighters called a helicopter to take the family off the island to a hospital, where the toddler was successfully treated.

Alex is now an adult and has left asthma attacks behind. But those moments of near panic taught Davis that anyone can struggle with health literacy — even people with nursing knowledge and expertise.

Today, Davis is a health-care consultant and also serves as a senior faculty member of British Columbia’s BC Impact health-care initiative, where she is the quality improvement lead for Patients as Partners, a program to improve self-management and health literacy. Recently, she worked with four primary care practices in B.C. on a project involving teams of physicians, nurses and adult learners on ways to improve health literacy in their communities.

Davis is passionate about health literacy because, she says, it is an issue where the solutions are close at hand and nurses can really have an impact: “It feels like something in which you can actually make a difference.”

Across the country, provinces, regions, hospitals and individual health authorities are creating their own pilot projects and initiatives to raise awareness of health literacy and to address their population’s needs. The McGill University Health Centre (where Shohet has been working with staff for a decade on successive health literacy projects) has created “navigation kits” on breast cancer and prostate cancer. The kits are highly visual, with minimal text. They are intended to provide patients with essential information about their cancer and treatment as well as practical information for navigating the hospital and support services, without being overwhelming.

Of 34 women surveyed more than six months after they received the breast cancer kit, almost all felt that they better understood their disease and treatment and were equipped to ask better questions.

Although many individual health literacy projects have merit, Canada, as a country, has not engaged in what Shohet calls “serious research” to find out if these projects are producing what they are promising or if their best practices stand up in a variety of contexts. “There are definitely lots of pilot projects going on,” she says. “The challenge will be to pick this up and construct some kind of systematic research agenda.”

Shohet would like to see hospitals meet health literacy standards in order to be accredited, following the U.S. trend. “If you started to see that happen here, you would start to get some serious uptake,” she says.

Sharon Brez, too, believes that the Canadian health-care system has a way to go to recognize the scope of the health literacy problem and its impact on health — although she says it is moving in the right direction.

Brez, an advanced practice nurse in endocrinology and metabolism at the Ottawa Hospital, conducted pioneering research on health literacy in the mid-1990s. “There’s an expectation of a higher level of literacy than actually exists,” says Brez, who continues to encounter health-care professionals who insist that print materials should aim higher than a grade 8 or 9 level. Occasionally, she sees hospital signage that is too complex for many people to understand and that doesn’t use enough symbols or pictures.

When teaching her students how to communicate with patients, Brez stresses that print material should be used only as reinforcement. “If we have important messages to share with people, we should, as much as possible, be doing it face to face.”

While nurses and other health-care professionals may be accustomed to accommodating patients who are new immigrants, Brez thinks the system does not cater nearly as well to clients who have less visible literacy difficulties.

The secret of successfully making that accommodation involves nurses developing relationships with their patients, she says, so that nurses know how their clients prefer to learn and make it acceptable for the clients to disclose difficulties they have understanding information. “It’s about nurses and other professionals having conversations with people.”

When Brez interviewed adult learners for her research project 15 years ago, she found that some worried that if people found out they could not read, they would lose their children or be labelled incompetent. “I don’t think it’s any different now — there’s still that sense of vulnerability,” she says.

That’s why nurses like Sharon Brez and Liz Thompson take health literacy so seriously. They treat it as a matter of public trust.

Health literacy refers to a person’s capacity to find, understand and use basic health information and services needed to make appropriate health decisions.
– Canadian Public Health Association

“I consider literacy issues to be one of the determinants of overall health. Communication problems can be a major barrier to someone’s ability to navigate the health-care system.”
– Liz Thompson, public health nurse and literacy coalition volunteer

Basic literacy has not declined, but the demands on people to understand health information have increased.

Laura Eggertson is a freelance journalist in Ottawa, Ont.
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