Introduction and Overview
Health literacy is the ability to read, compute, understand, and act on health information, to make informed decisions. Low health literacy is a serious threat to the wellbeing of persons seeking medical care. With the increased diversity of the clients that we may work with, we see that our communication skills are less effective with people from backgrounds different from our own. This course is going to provide a good overview of health literacy.
Let's begin with a few definitions. Literacy is the ability to understand and use reading, writing, speaking, and other forms of communication as ways to participate in society and to achieve one's goals and potential. Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services that they need to make appropriate health decisions.
Health Literacy - Individual and Systemic Factors
Health literacy is dependent on a number of different individual and systemic factors. It is the communication skills of laypersons and of professionals like ourselves. It is culture. It is our knowledge of health topics, and how we can communicate those appropriately to participants. It is the demands of healthcare and the public health systems, and the demands of the situation or the context in which the client is presented.
Health Literacy - Impact
Health literacy affects an individual’s ability to navigate the healthcare system. Filling out healthcare forms, locating providers and services, and even understanding insurance are all affected by your health literacy. Health literacy impacts your ability to share personal information, such as health history, with providers, and to engage in self-care and chronic-disease management. Understanding concepts like probability and risk, and even medication management, are all affected by your health literacy.
Health Literacy Skills
Numeracy skills. There are a couple of different skills that are involved in health literacy. First, are numeracy skills which include things like calculating cholesterol and blood sugar levels. Measuring medications, as well as understanding nutrition levels and labels, require math skills. Choosing between health plans, comparing prescription drug coverage, and calculating premiums and co-pays all involve numeracy skills.
Health topics. Then there is the knowledge of health information or health topics. People with limited health literacy often lack knowledge or have misinformation about the body, as well as the nature and cause of various diseases. Without this knowledge, they may not understand the relationship between their own lifestyle factors, like diet and exercise, and the various health conditions that they may have.
Health information can even overwhelm persons with advanced literacy skills. Medical science progresses rapidly, and what we may have learned about health or biology during our school years often becomes outdated or forgotten, or it might have been incomplete to begin with. Moreover, health information provided in a very stressful or unfamiliar situation, like we see in healthcare, is unlikely to be retained.
It is important to know that low health literacy is a global crisis that affects everyone. That is why it is so important to address this issue and confront the facts head-on. Quite simply, the responsibility is ours as health care professionals to communicate in what we will call “plain language.” Without clear communication, we cannot expect people to adopt the healthy behaviors and the recommendations that we champion. When people receive accurate and easy-to-use information about a health issue, they are better able to take action to protect and promote their own health and wellness.
I just mentioned “plain language” and that is a strategy for making written and oral information easier to understand. It is one very important tool for improving health literacy. Plain language is communication that users can understand the first time they read it or the first time they hear it. A plain language document is one in which - with reasonable time and effort - people can find what they need, understand what they find, and act appropriately on that understanding.
The key elements of plain language include: Organizing the information so that the most important points come first; breaking complex information down into understandable chunks; using simple language and defining technical terms; and using the active voice versus passive voice. The language that is plain to one set of readers may not be so plain to others. It is important that you know your audience, and that you test your materials before, during, and after they are developed.
Remember that speaking plainly is just as important as writing plainly. Many plain language techniques would apply to verbal messages as well. When we communicate, we want to avoid jargon and make sure that we explain technical or medical terms.
Incidence and Statistics
Low Literacy Statistics
More than 36 million adults in the United States cannot read, write, or do basic math above a third-grade level. When we look at the economic impact of low literacy, it costs the United States about $225 billion every year in the form of non-productive work, crime and/or loss of revenue due to unemployment. The healthcare costs linked to low literacy skills in adults is $232 billion annually. In addition, every year about two million immigrants come to the United States and of those, 50% lack a high school education and proficient English.
A study conducted on health literacy found that 43% of patients did not understand the rights and responsibilities section of a Medicaid application. Twenty-six percent could not make an appointment or understand what was on an appointment slip. Sixty percent did not understand an informed consent, and 33% could not read basic health care materials. Forty-two percent could not comprehend directions for taking medications on an empty stomach, and that is so important because no matter what the setting, our patients are taking medications. That can have a huge impact on the speech-language pathology plan of care, and any plan of care. These statistics are very eye-opening.
Although limited health literacy skills affect most adults at some point in their lives, there are some disparities in prevalence and severity. The National Center for Education Statistics indicates that certain populations are most likely to experience limited health literacy, or - at the very minimum - be at a higher risk than other populations. These at-risk populations include adults over the age of 65; refugees and immigrants; people with incomes at or below poverty level; racial and ethnic groups other than white; people with less than a high school degree or a general education diploma (GED); and non-native speakers of English.
Incidence and Identification
Nearly nine out of every 10 people in the United States have limited health literacy and experience difficulty using health information to manage their health and their healthcare. There is a big discrepancy, too, between the health literacy levels of healthcare professionals and other individuals receiving health services. That discrepancy is one of the biggest reasons that we have poor communication in healthcare.
It is also important to note that education level is not a good predictor of literacy. Ninety percent of individuals have limited health literacy, and that includes people of all races, ages, incomes, and education levels. For that reason, the Health and Human Services Department’s Agency of HealthCare Research and Quality (AHRQ) recommends that we use something called "universal precautions." It is an approach in which the healthcare professional should assume that most individuals will struggle to understand health information. Again, even though somebody appears well-educated, or speaks well, he may still have health literacy issues. If you assume that all of your patients may have difficulty understanding health information, you will reduce the risk of communication issues and you will improve comprehension and confirmation for all of your patients.
Signs of Low Literacy
Some of the signs of low literacy include poor compliance with treatments and appointments; watching or mimicking others; and not knowing the names of regularly used medications or how to take them. The individual may make excuses for not being able to read (e.g., "Oh, I forgot my glasses" or "I do not have time for that today"), or may bring someone along who can read appointments to her. You may see vocalization or sub-vocalization when she is reading; you see her lips moving. She may exhibit confusion or frustration when reading.
Additionally, there are other behaviors or responses that you may see; for example:
- Patient registration forms are incomplete or contain mistakes
- The patient does not take medication as directed
- The patient does not follow through with lab tests, imaging tests, or referrals
- Responses to receiving written information:
- "I forgot my glasses. I’ll read this when I get home."
- "I forgot my glasses. Can you read this to me?"
- "Let me bring this home so I can discuss it with my children/spouse."
- Responses to questions about medication
- The patient is unable to name medications
- The patient is unable to explain a medication’s purpose
- The patient is unable to explain the schedule/frequency for taking a medication
The person may not follow through with lab tests or referrals. When he receives information from you, he may respond with, "Let me bring this home, so I can discuss it with my spouse or my children.” He may be unable to explain his medication schedule or frequency. Sometimes you need to read between the lines to identify some of these signs of low literacy.
Relationship Between Health Literacy and Health Outcomes
Obviously, there is a relationship between health literacy and health outcomes. According to research studies, individuals with limited health literacy are more likely to skip important preventative measures, such as mammograms or pap smears or even flu shots. When compared to those with adequate health literacy skills, studies show that patients with limited health literacy enter the healthcare system when they are sicker because they are not using some of those preventative services.
Knowledge of Conditions and Treatment
Persons with limited health literacy skills are more likely to have chronic conditions, and more importantly, they are less able to manage them effectively. Studies have found that patients with limited health literacy skills who have high blood pressure, diabetes, asthma, human immunodeficiency virus (HIV), or acquired immune deficiency syndrome (AIDS) have less knowledge about their illness and how to manage it.
Additionally, limited health literacy skills are associated with an increase in preventable hospital visits and admissions. I think that no matter what setting you are working in today, that is important. Studies have demonstrated a higher rate of hospitalization and use of emergency services among patients who have limited literacy skills.
Additionally, studies demonstrate that persons with limited health literacy skills are more likely than persons with adequate health literacy skills to report their health as poor.
Continuing on, persons with limited health literacy skills make greater use of services designed to treat complications of disease, and are using fewer services designed to prevent those complications. In other words, they are using less preventative medicine. We already said that they have a higher rate of hospitalization and greater use of emergency room services than other patients. That is obviously associated with higher healthcare costs, and depending on the setting, could result in penalties to that facility or setting as well.
Stigma and Shame
We also need to consider that there are negative psychosocial effects of low health literacy. One study found that individuals with limited health literacy reported a sense of shame about their skill level. As a result, individuals may sometimes try to hide their reading or their vocabulary difficulties in order to maintain their dignity. That is why it is important to recognize some of those other external signs as potential markers of low literacy.
What is your role? You can assist by ensuring that all health-related information you give to your patients matches their literacy abilities, their cultural sensitivities, and their verbal, cognitive, and social skills levels
The “Healthy People 2020” campaign by the Department of Health and Human Services talks about ensuring that therapists have appropriate communication and education skills so that they can help all people to gain access to, and understand their therapy services. This includes information and education that promote self-management for health and participation.
In addition, you can facilitate health literacy by promoting systems of care or environments that adhere to health literacy principles and strategies. We will talk more about that.
Link to Literacy
Rehab, in general, is linked to health literacy. As rehab clinicians, we stress the importance of capacities, function, participation, holistic approaches, client-centeredness, teaching information and methods, and access to services and equity issues. Therefore, we are well poised to address this issue.
Integrating Health Literacy into Practice
Be informed; recognize low literacy. Some of the strategies that you can use to improve clients' health literacy include the following. First, be informed about health literacy. You are completing this course so you must want to be informed! This is also your ability to identify challenging health literacy information. So, learn about it and learn how you can integrate it into your practice.
Do not assume that your patients understand you. Even if they nod their head or say they can understand you, repeat, repeat, repeat. Recognize that your residents or patients may feel powerlessness, shame, and a sense of failure.
Also, learn to identify your clients' characteristics; for example, their knowledge, their learning preferences, their beliefs, their culture, their barriers, and the like. Utilize those in your treatment. I already said this, but clients with low literacy skills are usually reluctant to ask questions, and they are skillful at hiding their problems.
Recognize barriers. Although there are diverging opinions about whether or not we can truly evaluate health literacy, it is important to recognize that there are some individual and societal barriers to the promotion of health literacy. There are functional declines associated with aging that are barriers. Lack of reading and writing proficiency, and low levels of formal education or lack of health knowledge and skills are also barriers. Obstacles can be presented by a different mother tongue or different cultural beliefs related to health. Barriers can also include living with disabilities, social stigma, and experiences from early childhood.
Standardize practice. We can also standardize our practice to health literacy. This really focuses on our ability to take health literacy level into account during our intervention. It is important to note that our professional associations and regulatory/licensing bodies also contribute to professional standards and position statements that will help us integrate this into our health practice.
Make information accessible. We also need to consider health literacy by making information accessible. We must adapt information to the individual needs and abilities of our patients, and show them how it is relevant to them. We can communicate using more than one modality; for example, verbal, non-verbal, etc. Using a structured educational approach will help us understand what motivates our clients and personalize their treatment plans. Again, we should use repetition, demonstration, and experimentation when we are teaching to ensure the message is understood.