Kathleen: Good morning everyone. Thank you so much for joining in today's session. Glad to have you here. This is a topic that is a really fun one for me to present.
Health literacy is the ability to read, compute, understand, and act on health information to make informed choices. Low health literacy is a serious threat to the wellbeing of persons seeking medical care, and with the increased diversity of the clients that we serve, we may observe that our communication skills are less effective with people from different backgrounds and different from our own.
Let's begin with an introduction and some additional 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 your goals. Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services that are needed to make appropriate health decisions.
Health literacy is dependent on a lot of different individual and systemic factors.
Individual and systemic factors.
- Communication skills of laypersons and professionals
- Lay and professional knowledge of health topics
- Demands of the healthcare and public health systems
- Demands of the situation/context
Affects people's ability to:
- Navigate the healthcare system, including filling out complex forms and locating providers and services
- Share personal information, such as health history, with providers
- Engage in self-care and chronic disease management
- Understand mathematical concepts such as probability and risk
Health literacy affects an individual's ability to navigate the healthcare system, most importantly by filling out complex forms and locating providers and services. I do not know if you have ever worked with someone on those forms, but they are very difficult for our patients to figure out. Even things like our home programs can be confusing. It also affects their ability to share their personal information and health history with providers. An example would be completing an occupational profile or engaging in self-care and chronic-disease management activities. They might also have difficulty with mathematical concepts.
Health Literacy Skills
Health literacy involves a number of different skills.
- Numeracy skills
- E.g., measuring medications, choosing between health plans, calculating premiums & copays
- Health topics
- E.g., the body, causes of disease, diet, and exercise
First is numeracy skills. This is calculating, for example, cholesterol or blood sugar levels, measuring out medications, or understanding nutrition labels. These all require math skills. Choosing between health plans or comparing prescription drug coverage requires calculating premiums, copays, and deductibles. Now, in addition to basic literacy skills, health literacy also requires knowledge of health topics. People with limited health literacy often lack knowledge or have misinformation about the body, as well as the nature and the causes of various diseases. Without that knowledge, they may not understand the relationship between lifestyle factors such as diet and exercise, and how they impact health outcomes. Health information can overwhelm even persons with advanced literacy skills. Medical science progresses very rapidly, and what individuals may have learned about health or biology long ago during their school years, often becomes outdated or forgotten. Or it can be incomplete. Moreover, health information that is provided in a stressful or an unfamiliar situation is very unlikely to be retained.
Low literacy is a global crisis that affects every one of us, and that is why it is so important that we, as practitioners, address this issue. Quite simply, the responsibility is ours, as healthcare professionals, to communicate in plain language, which we will be discussing in just a moment. Without clear communication, we cannot expect them 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, protect themselves, and promote their own health and wellness.
What is plain language? Plain language is a strategy for making written and oral information easier to understand and is one very important tool for improving health literacy. Plain language is communication that users can understand the very first time that they read it or hear it. With reasonable time and effort, a plain language document is one in which people can find what they need, understand what they find, and act appropriately on that understanding. Some key elements of plain language include organizing information so the most important points come first, breaking down complex information into understandable chunks, using simple language and defining technical terms, and using the active voice not the passive voice. Remember, too, that language that is plain to one set of readers may not be plain to another set. It is critical to know who your audience is and have them test your materials before, during, and after they have been developed. Speaking plainly is just as important as writing plainly. Many plain language techniques apply to verbal messages to avoid jargon and explain technical or medical terms. We will discuss this more toward the end of the session today.
Incidence and Statistics
Let's talk a little bit about incidents and statistics. Some of this was eye-opening to me.
Low Literacy Statistics
More than 36 million adults in the United States cannot read, write, or do basic math above a third-grade level. Low literacy costs us about $225 billion each year in things like non-productive work, crime, and loss of revenue due to unemployment. It is estimated that $232 billion every year is linked to health care costs and adult low literacy skills. And, every year about two million immigrants come to the United States with half of them lacking a high school education and proficient in English.
A study that was done by Campinha-Bacote in 2005 found that of patients that were surveyed, 43% did not understand a Medicaid application, 26% could not understand information on an appointment card, 60% could not understand a basic informed consent, 33% could not read healthcare materials, and 42% could not comprehend directions for taking medications on an empty stomach (Campinha-Bacote, D., 2005). This is very eye-opening to see really where our patients stand with regard to literacy skills. Although limited health literacy affects many different people at some point in their lives, there are disparities in prevalence and severity.
Vulnerable Populations (National Center for Education Statistics, 2006)
Certain populations are more likely to experience limited health literacy.
- Adults over the age of 65
- Recent refugees and immigrants
- People with incomes at or below poverty levels
- Racial and ethnic groups other than white
- People with less than a high school degree or GED
- 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 effectively manage their health. That is pretty staggering. There is often a discrepancy between the health literacy level of a healthcare professional, meaning us, and that of an individual who is receiving health services. This discrepancy is one of the biggest causes of poor communication in health and healthcare. It is important to note that a person's education level is not a good predictor of his or her health literacy since almost 90% of individuals have limited health literacy. Individuals of all races, ages, incomes, and education levels are affected. For this reason, Health and Human Services Agency for Healthcare Research and Quality, or AHRQ, recommends that healthcare professionals adopt something called universal precautions in which health care professionals assume that most individuals will struggle to understand health information and are going to have difficulty (HHS AHRQ, 2015; Kutner, Greenberg, Jin, & Paulsen, 2006; Weiss, 2003; Weiss, 2007; HHS ODPHP, 2010). We should simplify all of our communication and confirm comprehension for each and every patient.
Signs of Low Literacy
- Poor compliance with treatments and appointments
- Watching and mimicking others
- Not knowing the names of regularly used medications
- Making excuses for not reading
- Bringing someone who can read to appointments
- Vocalization or sub-vocalization when reading
- Confusion or frustration when reading
As we are working with our patients, it is important for us to recognize these signs. For example, if we see that they do not know their medications or how they should be taking them, that might be a sign of low health literacy.
Additional Signs of Low Literacy (Weiss, 2003)
- 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
Relationship Between Health Literacy and Health Outcomes
What is the relationship between health literacy and health outcomes?
According to research studies, persons with limited health literacy skills are more likely to skip important preventative measures, like mammograms, pap smears, and flu shots as compared to those individuals with adequate health literacy skills. Studies have shown that patients with limited health literacy skills enter the healthcare system when they are sicker. They are not doing preventative care, but they are going to the ER instead when they are sicker (Scott, Gazmararian, Williams, & Baker, 2002; Bennet et al., 1998).
Knowledge of Conditions and Treatment
Additionally, persons with limited health literacy skills are more likely to have chronic conditions and they are less able to manage these effectively. So studies have shown that patients with things like high blood pressure, diabetes which is a big one specifically type two, asthma, HIV or AIDS who have limited health literacy skills have less knowledge about their illness and how to manage it. Hospitalization: limited health literacy skills are associated with an increase in preventable hospital visits and admissions. And obviously this is a huge issue in healthcare in general because a lot of folks are being tracked on this particular marker (Williams, Baker, & Parker, 1998; Schillinger et al., 2002; Schillinger et al., 2003; Williams, Baker, Honig, Lee, & Nowlan, 1998; Kalichman, Ramachandran, & Catz, 1999; Kalichman & Rompa, 2000; Kalichman, Benotsch, Suarez, Catz, Miller, & Rompa, 2000).
Studies have also shown an increase in preventable hospital visits and admissions, higher rates of hospitalization, and a higher frequency of emergency services use in those with low health literacy skills (Baker, Parker, Williams, & Clark, 1997; Baker, Parker, Williams, & Clark, 1998; Baker et al., 2002; Gordon, Hampson, Capell, & Madhok, 2002).
Additionally, studies demonstrate that persons with limited health literacy skills are significantly more likely than persons with adequate literate skills to report their health as poor (National Center for Education Statistics, 2006).
Persons with limited health literacy make greater use of services that are designed to treat complications of disease and less use of services that are designed to prevent those complications in the first place. Studies demonstrate a higher rate of hospitalization and use of emergency room services and this higher use is associated with higher healthcare costs (Friedland, 1998; Howard, Gazmararian, & Parker, 2005).
Stigma and Shame
Low health literacy may have negative psychological effects that again, as occupational therapy practitioners, we can address. One study found that those with limited health literacy skills reported a sense of shame about their skill level. And as a result, what they may do is hide their reading or their vocabulary difficulties to maintain their dignity (Parikh et al., 1996; Baker et al., 1996).
Occupational therapy practitioners can certainly assist in ensuring that all health-related information and education that we provide to our patients match their literacy abilities, their cultural sensitivities, and their verbal, cognitive, and social skills. The objectives that were set forth in the Healthy People 2020 campaign from the Department of Health and Human Services include ensuring that all therapists have appropriate communication and education skills to help enable all people to gain access to and understand therapy services. This includes information and education that promotes self-management for optimum health and participation (DHHS, 2013). In addition, we, as occupational therapy practitioners, may facilitate our clients' health literacy by promoting systems of care or environments that adhere to health literacy principles and strategies.
Link to Literacy
Therapy stresses the importance of:
- Capacities, functioning, participation, and empowerment of clients
- Holistic approach
- Client-centered practice
- Teaching of information and methods
- Access to services and equity issues
Rehabilitation is linked to health literacy because both stress the importance of capacities, functioning, participation, and empowerment of our clients using a holistic approach.Client-centered practice, the teaching of information and methods, and access to services and equity issues are other important factors (Levasseur & Carrier, 2010). If this does not describe occupational therapy, I do not know what does.
Integrating Health Literacy into Practice
What are some different strategies that we can use to improve clients health literacy?
Be informed about health literacy and recognize it.
- Learn about health literacy and ways to integrate it into practice
- Do not assume that all clients understand what they are told even if they nod their head or that they can read
- Recognize the powerlessness, shame and sense of failure that some people may feel
Identify your client’s characteristics
This refers to your knowledge and ability to identify challenging health literacy information so you can learn about health literacy and integrate it into your practice. Do not assume that all clients can understand what they are told even if they nod their head or if they can read the information. We need to review it many times with them and make sure that they can understand it. We need to recognize the powerlessness, the shame, and the sense of failure that some people may feel. We need to identify your client's characteristics, their knowledge, their teaching preferences, their skills, beliefs, culture barriers, etc. These are all things that we can tap into as we complete the occupational profile with our patients upon evaluation. Clients with a low health literacy levels are again usually reluctant to ask questions and are skillful at hiding their problems.
Important to recognize individual and societal barriers to the promotion of health literacy.
- Functional declines associated with aging
- Lack of reading and writing proficiency
- Low levels of formal education or lack of health knowledge and skills
- Different mother tongue or cultural beliefs
- Living with disabilities and social stigma
Experiences in early childhood
Although there are diverging opinions that are out there about whether or not we can actually evaluate health literacy, it is important to recognize that there are a lot of different individual and societal barriers to the promotion of health literacy.