Abstract and Keywords
The revised NASW Standards and Indicators for Cultural Competence in Social Work Practice (2015) requires social workers to “provide and advocate for effective communication with clients of all cultural groups, including people of limited English proficiency or low literacy skills, people who are blind or have low vision, people who are deaf or hard of hearing, and people with disabilities” (p. 43). This article focuses on one component of this standard—literacy, specifically health literacy. It presents a summary overview of health literacy and its implications for social work practice. It also presents the history of the concept and provides various definitions and types of health literacy as described in the literature. The authors describe the association between health literacy levels of the population, the intricacies of health systems, and their impact on health outcomes. The negative impact for marginalized populations including persons with limited English proficiency and immigrants and refugees—a major focus of the social work profession—signals the need for action at multiple levels. The authors explore a multifaceted approach to health literacy at the clinical, organizational, and policy levels with reference to the role of the social work profession.
Positive health outcomes require clear communication between providers and health consumers at the individual, organizational, and population levels. The United States health system operates with significant assumptions about the capacity of health consumers to engage in a variety of processes such as seeking information, accessing care, performing self-care and self-management, understanding rights and responsibilities, and making informed healthcare decisions for themselves and their loved ones. One major assumption is that people are knowledgeable and are literate. Contemporary research suggests a significant discrepancy between people’s skills and abilities and the demands of healthcare systems. The revised NASW Standards and Indicators for Cultural Competence in Social Work Practice (2015) requires social workers to “provide and advocate for effective communication with clients of all cultural groups, including people of limited English proficiency or low literacy skills, people who are blind or have low vision, people who are deaf or hard of hearing, and people with disabilities” (p. 43; see Goode & Jones, 2009). This article focuses on one component of this standard—literacy, specifically health literacy. The focus on effective communication is important to guard against the inclination of the medical community and other service providers to believe that the “fix” of a health status problem is “medical care” when the issue may actually be health education and health literacy (Ferguson & Pawlak, 2011, p. 126).
The connection between poor literacy and health status has been well documented and is now better understood. Health literacy is important because it influences patient access, communication, decisions, and treatment adherence (Ferguson & Pawlak, 2011). There is a consistent association between low health literacy and limited health-related knowledge and comprehension, contributing to poorer health outcomes (DeWalt, Berkman, Sheridan, Lohr, & Pignone, 2004).
The magnitude of the issue is daunting. The National Health Literacy Action Plan (2010) reports that nearly half of all American adults, or 90 million people experience difficulty understanding and acting upon health information. It is estimated that only 12% of the 228 million US adults have the skills to manage their own healthcare adequately (Ferguson & Pawlak, 2011). Although there is some relationship to literacy in general, health literacy is not directly related to years of education or general reading ability. These factors have led to the emergence and evolution of the concept of “health literacy.”
Unfortunately, “health literacy” as a concept has received minimal social work attention in the juried literature (Liechty, 2011). This is despite the fact that much social work practice is conducted with or on behalf of health consumers who are disproportionately affected by low health literacy, such as: individuals over the age of 65, recent immigrants and refugees, those from minority groups, adults who speak languages other than English, people who are poor, and persons with less than high school education (Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011a; Rudd, Kirsch, & Yamamoto, 2004; U.S. Department of Health and Human Services, 2010).
This article provides the context and origin of the term and concept, the impact of low health literacy, approaches to address low health literacy at the practice, organizational and societal levels, and the implications for the social work profession.
The term “health literacy” has been used in health literature for over 40 years (Ad Hoc Committee on Health Literacy, 1999; Nutbeam, 2000). It was first used in an educational research paper written in 1974 entitled, “Health Education as Social Policy” (Simonds, 1974). The paper discussed health education (meaning education of members of society on health and the health system) as a policy issue impacting multiple systems including healthcare, education, and mass communication. Simonds defined health literacy as “health education meeting minimal standards for all school grade levels” (Ratzan, 2001). In this early conceptualization, adult learning, and literacy were viewed as assets in the promotion of good health and well-being (Nutbeam, 2008). Simonds posited that that there was a link between literacy and health and that educational systems neither provided sufficient education about health nor adequately promoted literacy skills needed for the population to fully understand and address health issues. This early use of the term demonstrated the significance of the relationship between literacy and health education.
Low Health Literacy Focus
By the mid-1980s interest in health literacy began to grow. The National Institutes of Health’s National Cancer Center organized a working group on health and literacy (Literacy Information and Communication Systems [LINCS], 2009). Work group deliberations were published in medical journals, further increasing awareness. In 1985, Doak, Doak, and Root wrote the first edition of what is considered to be a classic book on health literacy, entitled, Teaching Patients with Low Literacy Skills. The book presented educational theories, tests for literacy skills, assessments of the readability and suitability of written materials, and provides principles of clear communication. At about the same time, several government agencies sponsored health literacy training, among them, the Bureau of Indian Affairs, the Veterans Administration, and the Department of Health and Human Services (Literacy Information and Communication Systems [LINCS], 2009).
Several public health studies from the 1970s through the 1990s reported that most health information was written at reading levels that exceeded the reading level of high school graduates (Rudd, McCray, & Nutbeam, 2012). Concerns related to reading skills drew attention from those in health fields as the results from the 1992 National Adult Literacy Survey (NALS) were disseminated. The NALS indicated that 27 million or one in five American adults were not able to read a pamphlet, and that 40–44 million adults had literacy competency skills at the lowest level and could only understand the simplest written instructions (Kirsch, Jungeblut, Jenkins, & Kolstad, 1993, as cited in Doak, Doak, & Root, 1996).
Low Health Literacy and Health Outcomes
In the late 1990s and early 2000s research further illuminated the nature of the relationship between health literacy and health outcomes. Low literacy in a population has been directly and indirectly correlated to poor health outcomes (Parker, 2000) including infant mortality, as well as poor diabetes management (Weiss et al., 1994). responsiveness to health education, use of disease prevention services, and in poor self-care and disease management (DeWalt et al., 2004). Numerous studies were conducted to explore the readability of written health-related materials, assess patients’ capacity to read and understand these materials, recognize common medical terms, and ascertain whether patients’ literacy skills have an impact on health. In 2003, the National Assessment of Adult Literacy (NAAL) was amended to include six components to assess the breadth of literacy for Americans. Components assessed: (1) the relationships between adult literacy and select demographic and background characteristics; (2) the literacy skills of adults in federal and state prisons; (3) estimates of literacy for states participating in the state-level assessment; (4) adults’ ability to use their literacy skills in understanding health-related materials and forms at a national level; (5) basic reading skills by assessing adults’ ability to decode, recognize words, and read with fluency; and (6) the ability of adults with the lowest literacy levels to identify letters and numbers and to comprehend simple prose and documents (Rudd et al., 2004).
The 2003 NAAL is significant because it represented the first-ever assessment of national health literacy, and included materials on health and related topics such as drugs and alcohol, disease prevention and treatment, safety and accident prevention, first aid, emergencies, and maintaining health (Rudd et al., 2004). Health-related tasks were categorized into three domains: (1) clinical tasks (i.e., correctly interpreting instructions for taking medication), (2) preventive tasks (i.e., comprehending recommendations for gender- and age-related preventive medical services), and (3) healthcare system navigation (such as understanding eligibility requirements for health-related public services). The composite NAAL results were then used to classify adults into four levels of literacy: (1) proficient, (2) intermediate, (3) basic, and (4) below basic. The NAAL survey found that 22% scored at the basic level and 14% at the below basic level, whereas 52% of adults functioned at the intermediate level and only 12% functioned at the proficient level (Kutner, Greenberg, Jin, & Paulsen, 2006, cited in Liechty, 2011).
Rudd et al. (2004) reported that analysis of results of the 191 health-related activities of the NAAL, occasioned the development of the Health Activities Literacy Scales (HALS). The HALS uses a scale of 0–500 and indicates health literacy levels in a sequence from the lowest level (Level 1) to the highest (Level 5). HALS results reveal that when it comes to health literacy, approximately 12% of the U.S. population performed on the lowest level (Level 1) and an additional 7% experienced difficulty performing the most basic health literacy tasks with proficiency. In addition, of the respondents that performed below Level 1, 51% were born in the United States, 41% were born in a Spanish-speaking country, and 8% were born in other countries. Performance on the HALS had a strong correlation to several social determinants of health including education, race and ethnicity, country of birth and age, and wealth status. Education: Respondents that had not completed high school or received a GED, performed at lower levels than their counterparts, with approximately 48% performing above Level 1 and slightly more than 80% not performing above Level 2. Only about 14% of those who completed high school and 4% of those who continued education after high school performed below Level 1. Race/Ethnicity: The HALS findings indicated that on average, Whites score significantly higher proficiency levels than African American, Hispanic/Latino, and other racial and ethnic groups. Ten percent of individuals from racial and ethnic groups other than White performed below Level 1, and among Hispanic groups, 30% scored below Level 1. Country of Birth: Foreign born HALS respondents tended to perform significantly lower than U.S.-born respondents. While African-Americans scored better than Hispanic/Latino groups, Hispanics born in the United States had higher health literacy proficiency scores than native-born African-Americans. Age: Younger adults scored significantly higher than older adults on the health literacy scales. Approximately half of older adults performed in and below Level 1, and 33% performed in Level 2. Wealth Status: The highest HALS scores were received by individuals who were working and had financial assets such as savings and dividends. The lowest HALS scores were obtained by retirees living below the poverty level.
Initiatives towards Solutions
In 2004 the Institute of Medicine released Health Literacy: A Prescription to End Confusion. This report defined the concept of health literacy and the scope of the problem, and identified populations affected by low health literacy and the costs to society. In addition, the report: (1) outlined a set of basic health literacy indicators to support assessment of the extent of low health literacy at the individual, community, and national levels, (2) identified challenges to creating a heath-literate public, (3) assessed past attempts to increase national health literacy and interventions and approaches to promote health literacy (Nielsen-Bohlman, Panzer, & Kindig, 2004, pp. 3–4) In addition, the IOM Report presented information on the development of measures, tools, and screening protocols for use by practitioners to aid in the assessment of health literacy of their patients. The Agency for Healthcare Research and Quality (AHRQ) conducted a systematic review of healthcare service use and health outcomes related to differences in health literacy levels and interventions designed to improve these outcomes for individuals with low health literacy. This report highlighted the health impact of low health literacy and found that health literacy (using reading skills as a proxy) was associated with health-related knowledge and comprehension, hospitalization rates, global health measures, and some chronic diseases. Disparities in health outcomes and effectiveness of interventions among different socio-demographic groups were also examined (Berkman et al., 2011a).
In the mid 2000s, the U.S. Department of Health and Human Services developed Healthy People 2010 (HP2010) with goals and objectives to address health communication, linking health and communication as necessary elements of efforts to improve personal and public health (National Cancer Institute, 1989). Health communication goals addressed all aspects of disease prevention and health promotion within the contexts of: (1) health professional–patient relations, (2) individuals’ exposure to, search for, and use of health information, (3) individuals’ adherence to clinical recommendations and regimens, (4) the construction of public health messages and campaigns, (5) the dissemination of individual and population health risk information/risk communication, (6) images of health in the mass media and the culture at large, (7) the education of consumers about how to gain access to the public health and healthcare systems, and (8) the development of telehealth applications. (U.S. Dept. of Health and Human Services, 2000). While HP2010 did not directly reference health literacy, the concept was embedded in the overall health communication domain, goals, and objectives.
In 2010 the U.S. Department of Health and Human Services developed the National Action Plan to Improve Health Literacy. The Action Plan promoted an integrated plan for addressing health literacy with a foundational vision “of a society that provides everyone with accessible and actionable information, delivers person-centered health information and services, and supports lifelong learning and skills to promote good health” (U.S. Department of Health and Human Services, National Action Plan to Address Health Literacy, 2010). See Table 1 for the Action Plan’s seven goals.
Table 1. The seven goals of the National Action Plan to Improve Health Literacy.
The Action Plan provides vignettes, strategies, and approaches to improve health literacy at the national, state, and local, organizational, provider, and consumer levels.
Since its initial use, many definitions of health literacy have evolved, fueled by governmental agencies and large programs developing and promulgating official definitions. A basic definition of health literacy is as follows: “Health literacy is 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, Health Literacy: A Prescription to End Confusion, 2004, p. 32).
In Table 2, a variety of definitions of health literacy are provided. While each definition is unique, a common thread among definitions is the idea that health literacy involves the need for people to understand information that helps them to maintain good health or “decode and transform health information into health knowledge and from there to healthier behaviors” (Zanchetta & Poureslami, 2006, p. 526).
Health literacy is a term that encompasses a complex set of abilities and beliefs about health and illness, communication between the healthcare consumer and healthcare provider, and navigation of health services and supports. A range of issues and considerations are embedded in the concept of health literacy including literacy, knowledge, and beliefs about health and illness, and the ability to use and navigate health services and supports. Literacy reflects the ability to recognize words and comprehend the meaning of the words. It includes capacity to write and capacity to engage in basic arithmetic. Knowledge and beliefs about health and illness are both educational and cultural factors that encompass knowledge and beliefs about the biology of the body, signs and symptoms of disease, and causal factors relating to illness. Cultural factors influence perceptions about an individual’s role and capacity for prevention and management of maladies and who is deemed to the appropriate healer. Ability to utilize and navigate health services and supports involve basic skills such as filling a prescription to complex tasks of assessing different medical opinions to make decisions on major treatment options.
Benefits of Optimal Health Literacy
Health literacy is an important attribute for health maintenance and optimization in that to the degree that a given individual can read and interpret health educational material and be able to apply that information to his/her own context, the better the opportunity for good health. Health literacy is important for treatment of acute illness in terms of knowing signs and symptoms of illness, seeking timely evaluation, ability to communicate/describe symptoms (has the vocabulary to describe the problem) fully with the healthcare provider, ability to understand the findings from the healthcare provider, ability to understand the interventions performed by the healthcare provider, and recommendations offered to the patient. Health literacy includes the knowledge of what questions to ask the health provider and ability to implement recommendations. These tasks are inclusive of basic skills such as how to count pills, measure liquid medications, schedule medication use, and tell time. Health literacy is a necessary skill for management of chronic illnesses that may require lifestyle changes. For example, special diets require knowledge of food groups, and the ability to read labels on products and measure.
Table 2. Health literacy definitions.
“Health literacy is 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, Health Literacy: A Prescription to End Confusion, 2004?, p. 32).
“Health literacy refers to a set of skills that people need to function effectively in the health care environment” (Berkman et al., 2011a, p. 97).
“Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” (World Health Organization, Seventh Global Conference on Health Promotion).
“Adequate functional health literacy means being able to apply literacy skills to health related materials such as prescriptions, appointment cards, medicine labels, and directions for home health care” (Parker, Baker, Williams, & Nurss, 1995).
“‘Health literacy’ is a constellation of skills that constitute the ability to perform basic reading and numerical tasks for functioning in the healthcare environment and acting on healthcare information” (American Medical Association, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, 1999, p. 533).
“Health Literacy is the ability to read and write and act upon oral and written health information in healthcare settings” (Isikawa & Yano, 2008, p. 114).
Mental Health Literacy
While most definitions of health literacy relate to healthcare, health education, and health promotion, the field of mental health has coined its own definition. Jorm and others define “mental health literacy” as knowledge and beliefs about mental disorders which aid their recognition, management or prevention (Jorm, 2000). Mental health literacy describes the individuals’ “ability to recognize disorders or types of distress, knowledge and beliefs about risk factors and causes, knowledge and beliefs about self-help interventions, knowledge and beliefs about professional help available, attitudes which facilitate recognitions and appropriate help seeking, and knowledge of how to seek mental health information” (Jorm, 2000, p. 396).
Public Health Literacy
Another related term is public health literacy, which is defined by Freedman et al. (2009) 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” (p. 448). This definition takes the perspective of health literacy beyond the direct practice communication between healthcare provider and healthcare consumer to an attribute of the community or population as a whole. The definition captures the spirit of “civic literacy” offered by Zarcadoolas, Pleasant, and Greer (2006), as “the skills and abilities that enable citizens to become aware of public issues, participate in critical dialogue about them and become involved in decision making process.” Thus, public health literacy requires what Nutbeam (2000) describes as “critical health literacy,” or “the cognitive and skills development outcomes which are oriented towards supporting effective social and political action, as well as individual action.” This perspective aligns with an ecological or person-in-environment perspective within social work that constantly examines the context and acts at the societal context level.
Health Literacy Concepts
Approaches to health literacy are many, and they vary as widely as the definitions previously presented. Researchers agree that the field of health literacy has expanded in scope and depth; others feel that the term “health literacy” itself has come to mean different things to various audiences and has become a source of confusion and debate (Baker, 2006). The literature cites multiple conceptualizations of health literacy. One approach identifies two parallel conceptualizations of health literacy: the clinical perspective that “views health literacy as a risk factor and the public health view of health literacy as a personal asset” (Nutbeam, 2008; Sørensen et al., 2012). Another model identifies an integrated conceptual model of health literacy with 12 dimensions related to knowledge, motivation, and competence in accessing, understanding, appraising, and applying health-related information within healthcare, disease prevention, and health promotion (Sørensen et al., 2012). See Table 3 for the 12 Dimensions of Health Literacy. Both perspectives view health literacy as a characteristic or attribute of an individual. Other health literacy frameworks are more consistent with the model espoused by the Institute of Medicine (Nielsen-Bohlman et al., 2004), which describes health literacy as “based upon the interaction between the individual’s skills within health contexts, the health care system, the education system, and broad social and cultural factors in the home, at work and in the community” (Nielsen-Bohlman et al., 2004, p. 5). Health literacy can be viewed as static based on individual capacity or dynamic based on interaction with healthcare system. Note that the aspect of knowledge is a function of both individual capacity and motivation to learn, and the resources provided by the health system.
Table 3. Twelve dimensions of health literacy.
Access/obtain information relevant to health
Understand information relevant to health
Process/appraise information relevant to health
Apply/use information relevant to health
1. Ability to access information on medical or clinical issues
2. Ability to understand health information and derive meaning
3. Ability to interpret and evaluate medical information
4. Ability to make informed decisions on medical issues
5. Ability to access information on risk factors for health
6. Ability to understand information on risk factors and derive meaning
7. Ability to interpret and evaluate information on risk factors for health
8. Ability to make informed decisions on risk factors for health
9. Ability to update oneself on the determinants of health in the social and physical environment
10. Ability to understand information on the determinants of health in the social and physical environment and derive meaning
11. Ability to interpret and evaluate information on the determinants of health in the social and physical environment
12. Ability to make informed decisions on the determinants of health in the social and physical environment
Source: Sørensen et al. (2012). Health literacy and public health: A systematic review and integration of definitions and models, pp. 10.
Health Literacy Promoting Effective Health Consumers
Literacy has been defined as “an individual’s ability to read, write, and speak in English and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one’s goals, and to develop one’s knowledge and potential” (National Literacy Act of 1991). Literacy can also speak to a person’s skill with or knowledge about a particular topic (e.g., “computer literacy”). In that context, “health literacy” is viewed by some as a constellation of skills that constitute the ability to perform basic reading and numerical tasks for functioning in the healthcare environment and acting on healthcare information (American Medical Association, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, 1999). Some authors include in this definition a working knowledge of disease processes, self-efficacy, and motivation for political action regarding health issues (Nutbeam, 2000).
Health Literacy Fostering Health Consumer Activation
This perspective of health literacy considers literacy not just as a function of reading, writing, and counting, but as an indicator of how literacy enables people to take action on their own behalf (Nutbeam, 2000, pp. 263–264). As literacy improves, there is potential for greater autonomy and personal empowerment, but literacy is dependent on exposure to information and appropriate and correct health messages. The capacity to make use of information and messages is influenced by culture, personal and social skills, and self-efficacy in relation to a given health concern or issue. See Table 4 that presents types of literacy and health literacy as defined in the literature by author, title and characteristics or components.
Table 4. Types of literacy and health literacy.
Functional Health Literacy
Basic functional literacy: sufficient basic skills in reading and writing to be able to function effectively in everyday situations; broadly compatible with a narrow definition of “health literacy” (Nutbeam, 2000, pp. 263–264).
Functional health literacy: the ability to read and understand commonly encountered materials and concepts in the healthcare setting (i.e., pill bottles and appointment slips) (Nutbeam, 2000, pp. 263–264).
Communicative/interactive literacy: more advanced cognitive and literacy skills which together with social skills, can be used to actively participate in everyday activities, to extract information and derive meaning from different forms of communication and to apply new information to changing circumstances (Nutbeam, 2000, pp. 263–264).
Critical literacy requires more advanced cognitive skills which, together with social skills, can be applied to critically analyze information and to use this information to exert greater control over life events and situations. Critical literacy is a function of personal and community empowerment (Nutbeam, 2000, pp. 263–264).
Print literacy: ability to read and understand text and to locate and interpret information in documents (Berkman et al., 2011a, p. 97).
Numeracy: ability to use quantitative information for tasks, such as interpreting food labels, measuring blood glucose levels, and adhering to medication regimens (Berkman et al., 2011a, p. 97).
Oral literacy: ability to speak and listen effectively (Berkman et al., 2011a, p. 97).
Cultural and Conceptual Knowledge
Cultural and conceptual knowledge: culturally influenced perceptions of health, health information and messages that inform definitions of health and illness, preferences, language and cultural barriers, care process barriers, and stereotypes (Baker, 2006, referencing the IOM definition).
Impact of Limited Health Literacy
All people can be impacted by limited health literacy. Even those with sufficient literacy skills may experience difficulties with health literacy related to the complexities and demands within healthcare contexts, which tend to be more demanding than the literacy needs of everyday life (Isikawa & Yano, 2008). As compared to persons with higher health literacy, low health literacy is linked to (1) higher risk of death, (2) more emergency room visits, (3) more hospitalizations, (4) poor self-reported health status, (5) lower use of preventive services, (6) delayed diagnosis, and (7) increased morbidity. Patients with low literacy were generally 1.5 to 3.0 times more likely to experience a given poor outcome (DeWalt et al., 2004). Low health literacy has also been correlated to high blood pressure, lower treatment adherence, and poor glycemic control. Low parental health literacy was related to poor symptom control for children with asthma. Liechty (2011) highlights the impact of low health literacy on the relationship between the healthcare provider and the healthcare consumer. The extra effort required by both parties to achieve adequate communication can strain the relationship. Provider frustration can compromise the relationship, leaving the healthcare consumer confused, dissatisfied, and offended, which can in turn lead to lower effort on the part of the patient to communicate fully, entering into a cycle of miscommunication and inadequate healthcare (p. 101).
Poor functional health literacy poses a major barrier to educating patients with chronic diseases, in part as a function of poorer ability to demonstrate taking medications properly and interpret medication labels and health messages (Agency for Healthcare Research and Quality, 2011; Berkman et al., 2011a; Berkman et al., 2011b; Ferguson & Pawlak, 2011; Sentell & Braun, 2012; Williams, Baker, Parker, & Nurss, 1998).
Ferguson and Pawlak (2011) noted access to services can be compromised. As an example, parents with low health literacy were more likely to have children who were not covered by health insurance. However, improving health literacy increased child health promotion by positively impacting modifiable risk factors, such as injury prevention, nutrition, obesity, and tobacco use, and maternal mental health.
Lower health literacy can partially explain racial disparities in health outcomes (Berkman et al., 2011a; Liechty, 2011). The populations that disproportionately experience poorer health outcomes, are the same populations that have lower health literacy. Lower health literacy impedes appropriate utilization of services (e.g., underutilization of prevention services, overutilization of emergency rooms and hospitalization), clear communication with healthcare providers (e.g., failing to describe relevant signs and symptoms, difficulty in understanding the medical diagnosis and treatment recommendations), and effective follow-through on treatment and recommendations (e.g., inability to fill a prescription) and greater likelihood of patient errors (e.g., inability to measure liquid dose). Each of these failings can contribute to greater morbidity and mortality of marginalized populations.
Low health literacy contributes to an increased cost of health services (Nielsen-Bohlman et al., 2004). Low health literacy is associated with differential use of certain healthcare services, including increased hospitalizations and emergency care and decreased prevention or early detection services such as influenza immunizations and mammography screening (Berkman et al., 2011a). In addition, poor functional health literacy may represent a major cost to the healthcare industry through inadequate or inappropriate use of medicines (Nutbeam, 2000, p. 263). An estimated cost of low health literacy is 106 to 238 billion dollars each year (Liechty, 2011, p. 101).
Low Health Literacy and LEP Populations: Immigrants and Refugees
Health literacy has been noted to disproportinately impact individuals from diverse racial, ethnic, cultural, and linguisitic backgrounds (Isikawa & Yano, 2008; Kimbrough, 2007; Rudd et al., 2004; Zanchetta & Poureslami, 2006). Low health literacy has been associated with poor self-reported health status in many diverse populations including Hispanic/Latino and Asian Americans, even when education and other accepted predictors of health status are controlled for. There is diversity within cultural groups regarding the degree of health literacy and the impact that it has on health outcomes. Lee et al. (2015) report on analysis of five subgroups of Asian American immigrants and noted that Chinese, Korean, and Vietnamese groups demonstrated the lowest levels of health literacy, while Filipinos showed the highest level. Health literacy was “positively correlated with health status among Chinese and Korean immigrants and negatively correlated with depression symptoms in Korean and South Asian immigrants” (p. 118).
Special Considerations for LEP Populations
The reasons for low health literacy in non-native English speakers are multifaceted and include, but are not limited to, culture, language, literacy, and familiarity with the U.S. healthcare system.
Culture. Zanchetta and Poureslami (2006) assert that enthnocultural differences in beliefs and practices and worldviews of health and wellness and of science are associated with limitations in health literacy for LEP populations (i.e., those with Limited English Proficiency). Immigrants and refugees may be uncertain about Western provider’s knowledge and acceptance of traditional healing practices and may be reluctant to share such information. In addition, they may show deference to healthcare practitioners as authority figures and not ask questions because they do not want to bother or because they are ashamed that they do not already know the answer. This suggests that in order to address diverse cultural realities about health, special attention must be paid to cultural symbols and modes of appropriating knowledge about health.
Language. Multiple authors have correlated limitations in English speaking ability or LEP with poor health literacy in Asian American, Hispanic/Latino, and other racial and ethnic groups (Gee & Ponce, 2010; Pippins, Alegria, & Hass, 2007; Shi, Lebrun, & Tsai, 2009). Non-native English speakers are often unable to access and understand both oral and written health information due to language barriers, which sometimes include lack of access to interpreter services, lack of availability of translated health-related material, and difficulties with patient-provider communication. Andrulis and Branch (2007) state that populations with limited English proficiency “face a unique set of challenges in obtaining, processing, and completely understanding basic health information and accessing preventive services.”
Literacy. Immigrants and refugees may have experienced limited educational exposure in the home country, which may have impeded basic knowledge of biology and physiology. They may demonstrate limited literacy and health literacy in English, and by contrast, may be both literate and health literate in their native language. While this population may display low or emerging literacy skills in English, it is important not to assume that they are not literate in their own language or that their basic knowledge is limited. Note the potential for confusion about a health form that asks for information (that may not be routinely shared) in a manner that is new/different (boxes, numbers, etc.) and is written in a language that may not be understood.
Unfamiliarity with the U.S. healthcare system. Individuals who are new to the United States may be unfamiliar with healthcare systems and lack clarity about the services that are available to them, how to access services, health benefits, and entitlements. In addition, there may be confusion as to eligibility to use U.S. healthcare services due to differences in legal documentation status, and the potential impact of using healthcare entitlements on future applications for naturalization.
Health Literacy and Social Work
Health literacy skills support the health consumer’s ability to achieve social work values of self-determination, self-efficacy, and empowerment. Health literacy contributes to the development of the activated patient, a patient who has the motivation, knowledge, skills, and confidence to make effective decisions to manage health (Greene & Hibbard, 2012). At a community or population level, health literacy emerges as an influence on the health status of a community or population, and it links to health disparities and inequalities (Berkman et al., 2011b; Liechty, 2011). As members of a helping profession, social workers can apply principles and strategies to promote effective communication in their own practice. Social workers are in position to both help individual health consumers and their families navigate the health system at their existing level of health literacy and help them improve their health literacy. As advocates for change, they can work with provider systems to effect change in practice that takes into account current levels of literacy and strategies that will improve the health literacy of the health consumer. Finally, in advocacy, advisory, or leadership roles, social workers can promote public policies that will provide an improved communication platform for those with low health literacy and address factors that contribute to low health literacy.
Social workers frequently work with or on behalf of marginalized populations, including those marginalized by race, ethnicity, immigration/refugee status, age (young or old), and/or disability status. Literacy and health literacy are issues that can be addressed directly as a focus of attention in social work practice with these populations. Liechty (2011) suggests that low health literacy could be considered a criterion for referral to a social worker, recognizing it as a risk factor for lower health outcomes.
The following sections address strategies to address low health literacy. Dependent on the specific role a social worker has in any given system, the social worker can employ or advocate for use of these strategies.
Approaches for addressing low health literacy encompass strategies at the clinical, organizational, and societal levels. Strategies must address both the growing complexity of the healthcare system and the emotional toll of low health literacy on the health consumer. The current health system offers significant challenges to any health consumer characterized by a fragmented system comprised of multiple providers with long waits and short visits, who do not communicate directly with each other but with the patient as messenger, offering complex and unsynchronized medication protocols, medical jargon, and extensive paperwork (Ferguson & Pawlak, 2011). In the midst of this structural complexity, persons with low literacy may be embarrassed and ashamed of their limitations and use an array of strategies to prevent healthcare providers and even family members from knowing their status (Parikh, Parker, Nurss, Baker, & Williams, 1996). Solutions, then, must account for both dynamics at the same time. The National Health Literacy Action Plan (U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, 2010) and the Agency for Healthcare Research and Quality (Brega et al., 2015) suggest a universal approach to low health literacy to embed strategies within the framework of organizational practice, thereby achieving organizational efficiency and protection of the dignity of all health consumers. Basic approaches include patient education and support, systems improvements, and healthcare provider accommodations (Liechty, 2011).
Measures of Health Literacy
Screening tools are useful to identify the need for targeted interventions. The detection and measurement of health literacy is an integral step to any process for improvement. Instruments for measuring literacy in the healthcare setting have focused on functional health literacy—the ability to read and, in some cases, to use numbers. Commonly used are the:
• Wide Range Achievement Test (WRAT) reading subtest,
• Rapid Estimate of Adult Literacy in Medicine (REALM),
• Test of Functional Health Literacy in Adults (TOFHLA).
The WRAT and REALM are word recognition tests, validated as instruments of reading ability. They are highly correlated with one another and with other traditional reading assessments. The Test of Functional Health Literacy in Adults (The TOFHLA) was developed using hospital materials. It consists of a 50-item reading comprehension and 12-item numerical ability test, taking up to 22 minutes to administer. The TOFHLA is a two-part test that is available in both English and Spanish. The first part provides participant with medical information or instructions about various scenarios, such as instructions on a prescription label. Participants review the scenarios and then answer questions that test their understanding. In the second part they are given passages of text about medical topics with blank spaces—to be filled in from a multiple choice list of options. (Weiss et al., 2005). Other related health literacy tests include, the revised version of the Wide Range Achievement Test and a Spanish language version of the TOFLHA or TOFHLA-S (Parker, Baker, Williams, & Nurss, 1995).
Duell, Wright, Renzaho, and Battacharya (2015) reviewed 43 different health literacy instruments. They assessed the degree to which these instruments measured the three dimensions of health literacy as described by Nutbeam—functional, communicative, and critical health literacy. They discovered that most of them failed to measure all three. One third measured communicative and critical health literacy; three measured functional, communicative, and critical health literacy, and half only measured communication health literacy. Instruments that combined numeracy and literacy were perceived as being more effective in identifying inadequate health literacy. Within that group, they identified a more recent tool, the Newest Vital Sign, as the most practical.
The Newest Vital Sign (NVS) was developed by Weiss et al. (2005). The Newest Vital Sign uses a nutrition label accompanied by a series of questions that require the participant to use reading and comprehension, numeracy, and interpretation skills to apply information to a given scenario. It has been positively received because it is easy to use, brief, and tests for a range of health literacy elements (McCune, Lee, & Pohl, 2016).
Clinical and Organizational Level Solutions
The responsibility for addressing health literacy belongs to everyone who provides healthcare services and supports. All oral and written communication should be provided using approaches that are clear, concise, and accurate and respond to the individual, cultural, and linguistic preferences and needs of healthcare consumers. Providers are expected to make necessary adaptations to the strategies currently used to convey health information to all patients. Approaches specific to improving health literacy focus on enhancing patient-provider communication, and using plain language and related strategies to adapt written health materials. Additional practices have focused on incorporating symbols, fotonovelas, and picture-based materials, including video and materials and information developed in languages other than English into patient education (Ferguson & Pawlak, 2011; Liechty, 2011).
Clinical level. There are a range of strategies that address patient accommodation and can be applied universally. Practitioners can limit the number of concepts shared at any one encounter. The vocabulary can be simplified to one- or two-syllable words, paired with pictures, symbols, or short video clips. Two routine methods can be incorporated in any given encounter: Ask Me3™ and Teach Back Method.
• Ask Me 3™ is an approach endorsed by the American Medical Association Foundation. It encourages the patient to ask the following three questions of their healthcare provider, and requires the provider to convey the information in a clear and concise manner: (1) What is my main problem?; (2) What do I need to do?; (3) Why is it important for me to do this? (Ferguson & Pawlak, 2011, p. 126)
Teach Back Method is a method to gauge the patient’s understanding of their illness and its treatment. Teach Back relies on spoken instructions, demonstration, and pictures. It encourages the use of everyday language, and involves the patient sharing in their own words and modeling what has been communicated (Ferguson & Pawlak, 2011, p. 126).
Written materials should use plain language at the reading level appropriate for the population. The material should focus on the central message, visually highlighting key words by underlining, highlighting, or underlining text and use lots of white space (Doak et al., 1996, cited in Ferguson & Pawlak, 2011). It should be jargon-free, easy to read, and include descriptive and graphic representations such as pictures and symbol formats (NASW, 2015).
Organizational. It is incumbent upon leaders within organizations to facilitate the application of the clinical level strategies within its routine operations and practices. An overarching approach to develop an organizational culture and operational capacity that successfully meets the needs of the service population is incorporated in the STEPP approach proposed in the National Action Plan to Improve Health Literacy (U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, 2010).
STEPP is rooted in community involvement and engagement, information sharing, partnerships, and use of evaluation for the improvement of health literacy. The components of STEPP include:
S: Sharing information such as findings, results, successes, and areas of growth across disciplinary and organizational boundaries;
T: Consider technology as an essential tool to improving health literacy;
E: Use of evaluation processes that are inclusive of the perspectives and preferences of diverse populations;
P: Cultivation of partnerships that span disciplines, organizations, and the community; and
P: Participation at the grass-roots level that focuses on community engagement.
Using the framework of STEPP organizations can use resources such as the AHRQ Health Literacy Universal Precautions Toolkit (Brega et al., 2015) to receive detailed guidance on how to embed processes to promote effective communication with persons with low health literacy. This toolkit provides specific tools within five primary domains: (1) how to get started, (2) improving spoken communication, (3) improving written communication, (4) improving self-management and empowerment, and (5) improving the supportive system.
Clearly, the work at the organizational level requires a comprehensive approach. As with other initiatives, it requires a dedicated team, an implementation plan, and strategies to achieve staff support and capacity. Specific interventions should include representation from health consumers in the development, implementation, and evaluation of strategies to ensure effective communication and achieve strong community partnerships.
National Level Solutions
The National Action Plan to Improve Health Literacy (U.S. Department of Health and Human Services, 2010) represents the most recent federal approach to address health literacy. Implementation of its seven goals (see Table 1) will require multiple policy decisions at local, state, and federal levels. One example is the presence of health literacy standards for health providers to be certified as Patient Centered Medical Homes, based on review by the Joint Commission of Health Organizations, the Utilization Review Accreditation Committee, and the National Committee on Quality Assurance. In addition, the National Standards on Culturally and Linguistically Appropriate Services (CLAS), developed by the USDHHS Office of Minority Health (2011) includes among its 15 standards a standard devoted to health literacy.
In addition to the efforts in the public sector, there is a constituency amongst many health professions that support the goals of the Action Plan including the American Medical Association, American Association of Pediatricians, Association of Clinicians for the Underserved, and the American Dental Association. These organizations create opportunities to provide support and guidance to its members and the health field as a whole to promote and advance strategies to achieve health literacy.
On the Horizon: The Activated Patient
The healthcare field is shifting its focus from expectations of a passive patient to that of an activated patient. The activated patient is a knowledgeable person who functions in partnership with the medical team. These are patients who have the “motivation, knowledge, skills, and confidence to make effective decisions to manage their health” (Greene & Hibbard, 2012, p. 520). Health literacy is one of the preconditions for achieving the requisite knowledge and skills. Marginalized populations, including persons with limited English and new Americans, who are already disproportionately challenged by low health literacy, are at risk of falling further behind. The social work profession has an opportunity to facilitate change at the individual, organizational, and macro levels to promote optimal health literacy, to accommodate the needs of persons with low health literacy, and to promote public policies that support actions needed on their behalf.
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