Definitions of Health Literacy

The term health literacy was first used in 1974 to describe how health information impacts the educational system, the health care system, and mass communication and was used as a goal to be established for grades K through 12 (AMA, 2005, p. 4). The concept of health literacy was not introduced into health care literature until the 1990s and the emphasis on self-management of health and disease in the early 2000s has placed more of a focus on an individual’s health literacy skills (Cutilli & Bennett, 2009). Health literacy as a concept has progressed from describing and defining the literacy skills of the adult population to the understanding that adequate, if not advanced, literacy skills are necessary to access, navigate, and understand the health care system of today.

Early definitions of health literacy focused on the ability of an individual to apply basic reading and numeracy skills to a health care concept, as in the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Institute of Medicine [IOM], 2004; Ratzan & Parker, 2000). Minor changes were suggested to this definition after consultation with an expert panel and review of other definitions found in the literature. The modified definition substituted “the capacity to” with “can” in an effort to emphasize the measurement of ability and separate health literacy from intelligence. It also added “communicate about” to emphasize the importance of oral communication skills. The term “basic” was suggested being removed, as each health literacy experience requires differing types of information and the term “health services” was eliminated. The word “informed” was suggested as a substitute for “appropriate,” as cultural preferences may influence interactions with the health care system and professionals (Berkman, Davis, & McCormack, 2010). Based on the stated suggestions, this revised definition of health literacy reads as “the degree to which individuals can obtain, process, understand, and communicate about health-related information needed to make informed health decisions.”

The World Health Organization (WHO) expands the definition to include personal action or use of information and states that health literacy represents the cognitive and social skills that determine the motivation and ability of individuals to gain access to, understand, and use information in ways that promote and maintain good health (WHO, 1998, p. 10). The AMA’s Ad Hoc Committee on Health Literacy (1999) describes health literacy as “the constellation of skills, including the ability to perform basic reading and numerical tasks required to function in the health care environment,” including the ability to read and comprehend prescription bottles.

Ratzan (2001) defines health literacy as a framework for health promotion activities and a link between knowledge and practice.

Health literacy has also been defined with a focus on health promotion, such as “the personal, cognitive, and social skills which determine the ability of individuals to gain access and understand, and use information to promote and maintain good health” by Nutbeam (2000). Another definition defines health literacy as an evolving lifetime process that includes the attributes of capacity, comprehension, and communication (Mancuso, 2008).

Other experts express health literacy as being a dynamic state and define health literacy as a “wide range of skills that people develop to seek out, comprehend, evaluate and use health information and concepts to make informed choices, reduce risks and increase quality of life.” This definition implies that individuals’ health literacy skills can change depending on various health experiences (Zarcadoolas, Pleasant, & Greer, 2005).

Health literacy affects all health care efforts and is based on the interaction of a person’s skills with health contexts, health care and education systems, and broad social and cultural factors at home, work, and in the community (IOM, 2011a).

Still others state that definitions of health literacy should incorporate the role of language and cultural and social constructs. It is “a tapestry of skills combining basic literacy, math skills, and a belief in the basic tenets of the treatment modality” (McCabe, 2006). To further expand on the concept of a “tapestry of skills,” health literacy requires a true partnership and cannot be simply looked upon as a measurement of an individual’s literacy skills. Health literacy is “dependent upon individual and system factors, which also include the communication skills, knowledge, and culture of both the professional and lay person, the context as well as the demands of the health care and public health system” (Berkman et al., 2010). This concept of health literacy removes the sole responsibility from the layperson and shares it with the clinicians and health care system.

After a systematic review of the literature regarding definitions of health literacy, Sorensen et al. (2012) deviated from the basic concept that health literacy is a skill set. “Health literacy is linked to literacy and entails people’s knowledge, motivation, and competence to access, understand, appraise and apply health information in order to make judgments and take decisions in everyday life concerning health care, disease prevention, and health promotion to maintain or improve quality of life during the life-course” (Sorensen et al., 2012, p. 3).

The wide range of health literacy definitions (Table 1.1), the continued discussions on whether health literacy is an individual or system skill, if it is stagnant or dynamic, all contribute to the challenges of continued research, consistent measurement, and possible solutions to enhancing low health literacy. Health literacy must be at the forefront of all that we do in nursing and health care. Clinicians can begin by reflecting on any unconscious bias that may be present, and reassessing their communication skills. Avoiding the use of medical jargon, respectfully using question-and-answer format and incorporating the use of teach-back for ascertaining understanding can assist in enhancing an individual’s health literacy skills. Clinicians can also assess opportunities that could enhance ease of navigation when accessing health care services.

Others feel that a brand new type of health literacy is needed to incorporate the influences of globalization and poverty and state that the current variety of definitions pose many limitations (Freedman et al., 2009).

Public health literacy is defined as “the degree to which individuals and groups can obtain, process, understand, evaluate, and act upon information needed to make public health decisions that benefit the community” (Freedman et al., 2009, p. 448).

The Patient Protection and Affordable Care Act of 2010 (ACA) defines health literacy as the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions (Centers for Disease Control and Prevention [CDC], 2010). This definition is similar to the Healthy People definition with the addition of the term “communicate.”

Healthy People 2010 and 2020 incorporated improving the health literacy of the population as a specific objective (U.S. Department of Health and Human Services [USDHHS], 2010). In the IOM report Health Literacy: A Prescription to End Confusion (2004), it is stated that “health literacy emerges when the expectations, preferences, and skills of those seeking information and services meet the expectations, preferences, and skills of those providing information and services.” Health literacy is not an individual issue and this definition exemplifies the partnership that is necessary to truly provide person-centered care. It will take more than individual skills to change health behavior and ultimately address the health and prevention challenges we currently face and will continue to face in the future.

Magnitude of the Issue

When reflecting on patient- or health-related research, reading ability and literacy skills as they relate to comprehension were the initial focus reported in the literature in the 1980s and 1990s (Speros, 2005). Those in the field of health literacy owe a tremendous amount of appreciation for the early research done by Leonard and Cecilia Doak and Jane Root. Doak, Doak, and Root helped to demonstrate the gap that existed between health education materials and a person’s lack of comprehension and this was shared in their publication Teaching Patients with Low Literacy Skills (Doak, Doak, & Root, 1996).

As a nurse, do you routinely think of your patients’ reading ability when giving them their discharge summary? When handing your patient a clipboard with admission forms to complete, do you offer to help with filling it out? How do you really know that your preoperative instructions were understood by asking, “Do you have any questions?”

The NAAL, completed by the Department of Education in 2003, is the only national assessment tool to have a specific component to measure health literacy. Over 19,000 U.S. adults age 16 and older participated in the national and state-level assessments, most in their homes and some in prisons from the 50 states and the District of Columbia.

The NAAL assessed adults’ prose, document, and quantitative literacy ability along with printed materials that are encountered on a daily basis when undergoing activities while at home, at work, or in the community (Figure 1.1).

An example of finding and using information from continuous text known as prose literacy is reading a brochure or instructional information. It requires the person to read text in a paragraph, to search and comprehend the content. Following preoperative or preprocedure instructions is an example of prose literacy. Document literacy incorporates the ability to read noncontinuous text such as forms, charts, or labels. In health care, document literacy is necessary for the completion of history forms on admission or comprehension of specific charts. Quantitative literacy incorporates the computation of numbers in the content being read. An example of quantitative literacy specific to health care is medication dosing or reading about the percentage of risk related to a specific procedure.

Figure 1.1

Framework for the 2003 National Assessment of Adult Literacy.

Source: White and McCloskey (forthcoming). Framework for the 2003 National Assessment of Adult Literacy (NCES 2005-531). U.S. Department of Education. Washington, DC: National Center for Education Statistics.

All health-related tasks in the NAAL fit into the prose, document, and quantitative scales but were related only to health content. The health literacy section specifically assessed the ability of adults to use their literacy skills when trying to understand health-related information in the clinical, prevention, and navigation areas with the majority of items being preventive and navigation as they are more applicable to the majority of the population.

The NAAL categorized health literacy into four separate categories including below basic, basic, intermediate, and proficient, and reported the following overall results (Figure 1.2).

It demonstrated that the majority of adults exhibited intermediate health literacy; however, more than one third or 36% of the adult population had basic or below basic health literacy (retrieved from nces.ed.gov/naal/health_results.asp, cited as Kutner et al., 2006). The results of the NAAL illustrated that individuals who have the most difficulty understanding health information are 65 years of age or older, Black or Hispanic, male, live at or below the poverty level, spoke another language before their formal education, are either uninsured or have Medicaid or Medicare, and do not seek information from print or nonprint sources more often than persons with higher levels of health literacy (Kutner et al., 2006). This provides us with a baseline of literacy and health literacy skills of American adults and assists in identifying the populations in greatest need.

Figure 1.2

Overall NAAL results.

The nursing profession represents the largest group of the U.S. health care workforce and has close proximity to the patient (IOM, 2011b). As nurses we must provide information in a way that is understandable to all patients and therefore would benefit from incorporating a “universal approach” when providing health education. After all, the NAAL reported that only 12% of adults in the United States exhibit proficient health literacy skills, indicating that health literacy is indeed a crosscutting priority. Health literacy should be a critical concern for everyone involved in wellness, health promotion, disease prevention, and treatment and management of chronic illness. Nurses directly and profoundly affect the quality of care patients receive and can make a positive impact by addressing the critical role of health literacy (Murphy-Knoll, 2007).

Misconceptions and Unconscious Bias

What are the assumptions or misconceptions that we may unconsciously make when it comes to health literacy? There are many—some much more obvious than others. Let’s take some time to go through and discuss them. This will allow us to pause and reflect on how we practice and what our expectations are for those we care for.

Theoretical/Conceptual Models

Although it is still challenging to define and measure health literacy, there has been a growing interest in related research. Health literacy has been the focus of the WHO, the Office of the U.S. Surgeon General, the IOM, the USDHHS, The Joint Commission, the Agency for Healthcare Research and Quality, the AMA, the Centers for Medicare and Medicaid, and Healthy People 2010 and 2020. Despite being a national public health issue, there remains a lack of true theoretical frameworks that explain health literacy (Pleasant, McKinney, & Rickard, 2011). Without a common “gold standard” definition of health literacy and a foundational theory, it continues to be very difficult to research, measure, and progress the field of health literacy and ultimately enhance patient outcomes.

The Institute of Medicine (2004) provided two conceptual frameworks for health literacy. One placed literacy as the foundation of health literacy and health literacy as the central mediator between health contexts and individuals. In this framework health literacy served as the conduit between the individual’s literacy skills and the health context (Figure 1.3). It also helps visualize the connection between health literacy and health outcomes.

The second framework illustrated by the IOM helps to visualize the interaction between and responsibility of three key sectors including cultural and societal factors, the education system, and the health care system (Figure 1.4).

This was not a causal representation, although the findings of limited health literacy and health outcomes do suggest a causal association. Conducting further research to demonstrate this association was suggested.

After review of the literature, the IOM committee concurred that the health system does not have sole responsibility for improvement in health literacy and that it is a shared responsibility among the three key sectors. In addition, health literacy could be a determinant in explaining the established link between education and health.

Figure 1.3

Health literacy framework.

Figure 1.4

Potential points for intervention in the health literacy framework.

One of the earlier concept analysis published in nursing by Speros (2005) reported an aim of assisting in defining the term health literacy as well as to clarify reference to it and also promote consistency in utilization of the concept in nursing and research. Defining attributes most often used in the literature were reading and numeracy skills, comprehension, using health information in decision making, and the ability to function in the role of a consumer of health care. Antecedents of health literacy were defined and included literacy as well as having a health-related experience. In addition, consequences of enhanced health were discussed and the role of nurses identifying consumers at high risk of low health literacy skills was emphasized.

Baker (2006) presented a conceptual model to define the domains of health literacy and the relationship of health literacy to health outcomes (Figure 1.5). It built upon the previous IOM report for a more specific discussion of the measures of health literacy.

The two major domains in Baker’s models are individual capacity and health literacy. The individual capacity domain is further broken down into reading fluency, which is the ability to mentally process written information and gain new knowledge and prior knowledge, which includes vocabulary and a conceptual knowledge of health and health care (Baker, 2006). Baker further divided the health literacy domain into health-related oral literacy and health-related print literacy as was done in the IOM report. The measurement of new knowledge, attitudes, and behaviors is represented in his model and is viewed as an outcome. Baker acknowledged that the majority of outcome measures were disease-specific knowledge and expressed the complexity of health literacy as a construct and the dependence upon a person’s ability to communicate and the increasing demands of the health systems and society.

Figure 1.5

Conceptual model of the relationship between individual capacities, health-related print and oral literacy, and health outcomes.

Paasche-Orlowe and Wolf (2007) emphasized a contextual appreciation of health literacy. Causal mechanisms of the health literacy–health outcomes relationship depend upon both the patient as well as the health care system. This conceptual model illustrates both individual and system factors that affect health care access, self-care, and the patient–provider encounter. Although this conceptual model illustrates a variety of interrelated critical occurrences such as social support, language, ethnicity, and age, Paasche-Orlow states the model has its limitations as it simplifies complex relationships.

In the concept analysis by Mancuso, the intricacies of health literacy are discussed. Mancuso refers to the “process of health literacy” (2008, p. 250) and that this process evolves over an individual’s life span. As illustrated in Figure 1.6, the central attributes of health literacy are capacity, comprehension, and communication. The antecedents of health literacy encompass culture, environment, language, learning together, sharing, and meaning of information. The skills of reading and understanding and language are inherent in the attributes of capacity and comprehension (Mancuso, 2008). Health literacy outcomes are dependent upon whether health literacy has been realized and also the potential to influence individuals and society.

Figure 1.6

Health literacy: A concept model.

Freedman describes limitations to the current definitions and conceptual models of health literacy as they “focus attention on and appear to limit the problem of health literacy to the capacity and competence of the individual” (Freedman et al., 2009, p. 446).

Health literacy is not an individual construct that starts and finishes with the patient. Another major limitation of several of the current conceptualizations is that the focus is on secondary and tertiary care rather than primary prevention of disease. In order to conduct health literacy research and change practice, Freedman states that social, political, environmental, and economic concerns must be included as they have an impact upon health. This change in focus would help in understanding and addressing societal level concerns that impact upon the public’s health. A critical factor in transforming health care and the well-being of all individuals is the ability to truly engage patients in their care. Koh et al. (2013) propose a Health Literate Care Model that would ultimately weave health literacy strategies into all aspects of the Chronic Care Model, now known simply as the Care Model. This proposed model assumes that all individuals are at risk for low health literacy and therefore methods to confirm and ensure patient understanding would be incorporated at each point of care (Koh et al., 2013, p. 357).

Health care organizations implementing the model would align health literacy as a core organizational value throughout all components of strategic planning and the delivery of care. Implementing the Care Model with health literacy approaches could ultimately serve to reduce duplication and inefficiency while improving patient’s understanding of and engagement in health care (Koh et al., 2013, p. 359).

Although further research is needed to demonstrate the impact of the Health Literate Care Model, it can represent a practical systems framework for organizations that aspire to adapt to the health literacy challenges of all individuals (Koh et al., 2013, p. 364).

Parnell describes the Health Literacy Tapestry (HLT) as a conceptual model (Figure 1.7) that emphasizes the fluidity of an individual’s health literacy skills dependent upon each specific health context. Tapestry is defined as “something felt to resemble a richly and complexly designed cloth” and is “used in reference to an intricate combination of things or sequence of events”(American Heritage Dictionary, 2012). This conceptual model uses a holistic nursing approach that is multidimensional, complex, nonstatic, with interwoven “threads” (antecedents) and “fibers” (domains) that impact upon both the individual and the system or provider factors. It represents the weaving of life experiences and behaviors with the health care system. The three basic “fibers” or domains include oral communication, written communication, and access and navigation. The skills associated with the stated “threads” may be cultivated, enhanced, or even diminish over time depending upon the life experience and specific context. The demographic thread includes race, ethnicity, age, and gender, while the thread representing health status incorporates vision, hearing, memory, and cognitive abilities. The remaining threads include previous health experience and knowledge, community support, cultural, spiritual, and social influences, and media and marketplace. This representation can be applied across the continuum of care, from acute to chronic care, with inpatient and ambulatory patients, through palliative and end-of-life care. Misconceptions and unconscious bias on both the part of the individual receiving care and the provider giving the care are central to the model. For example, limited English proficient patients have verbalized that they have refused interpreter services because they believed they had to pay for the service. We all have heard a professional express frustration about a patient not following a prescribed treatment plan and attribute it to their lack of caring or cooperation. Oftentimes, after further exploration it was disclosed that they could not afford the medication, didn’t have transportation, or simply did not understand the treatment instructions provided. The HLT addresses the measurement of health literacy skills by the utilization of teach-back within each specific context. With the shift in health care to wellness and prevention, a health literacy conceptual model must be applicable to both wellness and illness. The HLT supports practices in health care, health promotion, and disease prevention. Therefore, the outcome measurement is prevention and enhanced well-being so that it can truly be applied across the life span and entire continuum of care. The tapestry is an accurate illustration of the need to develop true partnerships in the complex world of health literacy, health care, and individual health status. After all, enhancing health literacy is much more than understanding health information. It is also the complex task of empowering individuals to access, collaborate, navigate, and act upon the health information provided to enhance well-being.

Figure 1.7

Health Literacy Tapestry.

The proposed HLT requires exploration and research to test the conceptual model. Perhaps initial research can apply the model to a specific disease state such as diabetes or hypertension. Research can also be done on a more global scale by applying the HLT to a wellness concept such as healthy behaviors or healthy lifestyles. There are a deficient number of nursing publications contributing to the research on nursing and health literacy. This conceptual model can serve as a catalyst to assist in the advancement of research and nursing theory that is applicable to the current demographic imperative and health care arena.

The nursing profession is ideally positioned to help consumers of health care cross the chasm between coverage and access as well as assist in the coordination of increasingly complex care. With more than 3 million members, the nursing profession represents the largest segment of the U.S. health care workforce (Census Bureau, 2009; Health Resources and Services Administration [HRSA], 2010) as cited in IOM (2011b, p. 23). Nursing practice covers the entire spectrum of health care, from health promotion, disease prevention, treatment of illness, coordination of care, to palliative and end-of-life care. Nurses play a crucial role throughout every aspect of this continuum, yet there is a lack of health literacy conceptual frameworks reported in the nursing literature. If nursing practice is based on nursing science we must continue to expand upon the development of conceptual frameworks for nursing research with the goal of enhancing nursing knowledge, guiding practice and ultimately enhancing patient outcomes.

Nursing Knowledge and Experience

Nurses are at the forefront of health care delivery and play a critical role in the promotion of health literacy thereby assisting in guiding our communities in reaching the overarching goal of The National Prevention Strategy to “increase the number of American’s who are healthy at every stage of life” (National Prevention Council, 2011, p. 7). Teaching consumers of health care and health counseling are integral to nursing practice.

Nurses are employed across many areas of health care and public health, are true patient advocates, and are uniquely positioned to create a cultural change in health care that will shift the focus to optimizing health and wellness.

Richard Carmona, MD, MPH, FACS, the 17th Surgeon General of the United States, has often referred to “health literacy as the currency for success in everything we do in health, prevention and wellness.” Yet, what is the health literacy knowledge and experience of our nursing colleagues? The majority of research on health literacy has historically focused on specific patient populations, acute versus chronic disease, and specific disease states, with less of a focus on the health literacy knowledge and experience of nurses.

The limited research results have unfortunately demonstrated that there are significant gaps among nurses regarding health literacy awareness, knowledge, skills, and practices that address low health literacy (Coleman, 2011; Cormier & Kotrlik, 2009). A study done by Mackert, Ball, and Lopez (2011) to improve information on the efficacy of a training program proposed to increase the health literacy knowledge of health professionals, demonstrated a marked improvement in the participants’ perceived knowledge of health literacy. “A significant additional finding was the participants’ overestimation of their own health literacy knowledge.” Of note, the study did not measure the participants’ behavior change as a result of the increased health literacy knowledge.

A Canadian pilot study of undergraduate nursing students integrating health literacy into the clinical setting (Zanchetta et al., 2012) reported several valuable results. The students valued their role as health educators and benefited both personally and professionally as their role expanded. One major theme that became apparent was their sensitivity to health literacy within a critical perspective. They demonstrated the ability to take a critical perspective and incorporate their clients’ life contexts into the health teaching. Their clients were able to “harmonize the health information they gathered within their own cultural understanding of health and illness.” The students’ sensitivity to their clients’ diversity enhanced the interconnectedness between health literacy and other social determinants of health. This training model is clearly representative of the positive outcomes that can occur when developing partnerships and providing patient-centered care.

Cormier and Kotrlik (2009) reported that knowledge gaps existed in the identification of older adults as a high-risk demographic for low health literacy. In addition, the senior baccalaureate nurses that participated in the research demonstrated a gap in the ability to screen for health literacy skills and assess guidelines for written patient education information.

Since continuing education activities require the identification of gaps in knowledge, health literacy should be incorporated as an integral component in all continuing nursing education activities. The provision of ongoing nursing education provides a wonderful opportunity and vehicle to address health literacy as well as the implications of low health literacy upon patient safety and patient outcomes.

Although it is encouraging to see that health literacy curricula for health care professionals are beginning to flourish, unfortunately there remains an absence of growth in these curricula reported in the nursing literature (Coleman, 2011). Nursing schools need to develop curricula and competencies to address this demonstrated gap in knowledge and skills. One of the goals of Healthy People 2020 is Health Communication and Health Information Technology with an objective to increase the health literacy skills of practitioners. Incorporating health literacy throughout the curricula will help ensure that our future nurses are adequately prepared to provide patient-centered care, improve health care outcomes, and eliminate disparities in care.

Health Literacy Resources for Nurses

References