Adapting Paulo Freire’s Pedagogy for Health Literacy Interventions

Abstract

Health literacy skills have been linked with desirable health outcomes. The pedagogical approach of Paulo Freire provides a framework for improving health literacy among underserved communities and for raising consciousness within communities about the social, material, and economic factors that affect health status. This article provides a framework for improving health literacy based on the pedagogy of Freire. The authors provide suggestions for how health literacy interventions can be based on collaboration between educators and the communities they serve. The model emphasizes reducing health disparities through raising consciousness about the contexts that affect a community’s health status and through encouraging community actions to address contextual factors.

Keywords

community health health education health promotion medical sociology human rights health literacy

Personal Reflexive Statements

Dearfield: As a public health researcher, I am interested in the ways in which we can help underserved communities to improve health behaviors and outcomes. My research in social science and the determinants of health has helped me understand the range of factors that affect people’s health, including their own knowledge and behaviors, the people they know, and the places they live. Freirian principles can help public health teachers to share their own expertise and draw on their students’ lived experiences to ensure health literacy concepts are relevant. I believe these pedagogical methods also help people work in their own communities and with their peers to improve the conditions that affect health. This article addresses how my coauthors and I think Freirian pedagogy provides an important method to help people intervene in their communities to improve social and environmental determinants of health, by helping them understand their world and how that affects their health outcomes. Doing so will help people and the communities in which they live take action regarding these determinants of health behaviors and outcomes and has the potential to improve health status on a large scale.

Barnum: As a scholar-activist, I am committed to teaching for change both inside and outside of the classroom. Freire’s pedagogy has been both a source of motivation and inspiration for me in the work I do as an educator and a useful tool that I can use to inspire and motivate others. Issues of health equity and addressing issues of health inequality are necessary pieces of human rights and human fulfillment, by applying Freire’s pedagogy to health literacy, community members can become empowered to make demands as a community and to take control of aspects of their health and well-being they might not otherwise think about or even realize affect them.

Pugh-Yi: For nearly 30 years of conducting research, supporting program and policy development, and program evaluation in public health, equity and access have been central concerns of mine. While basic research and technology have supported a wide range of effective treatments and interventions, disparities in access to quality health-care persist. Research shows this is due to issues with health-care systems, political and economic systems, and cultural competency in health communication. Addressing these issues requires investment and decision-making from individuals and communities affected by disparities. I have been involved with a broad range of projects involving several underserved populations. In every case, results emphasize that policies and programs will improve the health and well-being of the people they are intended to reach only if those people are empowered to make changes in their environments and communities. I believe Paolo Freire’s model of increasing social justice is a promising tool for increasing equity and strengthening the role of laypersons in improving health, health-care quality, and access to quality care.

Background

Health literacy has been linked with patient–provider communication and relationship quality, and treatment adherence, which are linked with health outcomes (Berkman et al. 2011; Yin et al. 2009). The pedagogical approach of Paulo Freire provides a framework for improving health literacy among underserved communities and for raising consciousness within communities about the social, material, and economic factors that affect health status. This article proposes a model for applying Freire’s pedagogical approach to improving health literacy and an approach for testing this model. The Freirean model defines teaching as engaging students by learning their values and perspectives, then offering literary instruction in a format that demonstrates the value of literacy in supporting students’ values and expressing their ideas. This model is designed to elicit student interest and leadership in lesson development and to help people analyze and articulate their environment and experiences. Applying these principles to health literacy is predicted to facilitate making educated health choices and becoming active participants in their health for community members. The approach emphasizes that it is as important for teachers to learn their students’ perspectives, needs, and values as it is for students to learn literacy skills. When students perceive how literacy can serve their purposes, when they see their own needs and values reflected in lessons, and when they perceive teachers respectfully learning from students, they will invest in the pedagogical process. To this end, we explore the patient–provider relationship as a way to move away from the polarization of these roles and to build a more Freirian health literacy. Student engagement will include becoming more literate regarding health, teaching community values and experiences to health educators, and teaching what they have learned to other community members.

The Centers for Disease Control and Prevention (CDC 2012) define health literacy as “the capacity to obtain, process, and understand basic health information and services to make appropriate health decisions.” Health literacy interventions typically include making informational materials more accessible and developing relationships with patients to ensure that patients understand treatment options, treatment regimens, and instructions and recommendations. This includes developing materials based on the patient’s language competency, cultural identity, and empowering the patient in the health-care setting (Adkins and Corus 2009); using simple language in communications (such as drug labels, measuring devices, and written and verbal communications and instructions) to lower medical errors and improve patient safety (Abrams, Klass, and Dreyer 2009); and making consent forms readable at a low literacy level (Abrams and Earles 2007). Previous interventions have sought to ensure people have comprehensive information about their health through empathetic discussion techniques (Banja 2007), referrals to open access journals (Paasche-Orlow et al. 2005), information sessions using consumer health librarians to disseminate information in multiple settings (Beaudoin et al. 2011), and free public education sessions about health literacy (Brower 2010; LaValley 2009).

Many of these interventions use a prescriptive method of intervention and do not seek to raise participant consciousness about the contexts that affect their health status and lead to health disparities or encourage community actions to address these factors. Without fully understanding participants’ concepts of health and health care, or motivations for wellness, interventions will have limited sustainability and impact. Paulo Freire’s approach offers a framework for addressing these needs. Health literacy should be reconceptualized as the ability not only to understand health information and to make informed personal health decisions but also the understanding of social determinants of health and how to affect them through community organization and education. Understanding health information includes understanding medical information and options and also the broader contextual factors that affect these options and the cultural factors that affect how options are perceived and chosen. Other researchers and program developers have proposed applying Freirean principles to health education. Wallerstein and Bernstein (1988) described their work in substance abuse prevention encouraging adolescents to take on the student–teacher role used in Freirean interventions. Rindner (2004) describes a similar approach and results with adolescent psychiatric patients. Rudd and Comings (1994) summarize four case studies of extending the role of student–teacher in the clinical setting to the role of instructional materials developer. The proposed approach builds on this work in health education and applies it to health literacy. It also expands the application of Freirean pedagogy to include community networking to address environmental causes of health inequity.

Impact of Health Literacy

People’s level of health literacy impacts the health care they receive in several ways. This section outlines the major ways the literature indicates health literacy affects health-care outcomes. The section presents prior studies based on helping people understand health information and make more informed health decisions. This type of intervention encompasses much of the work done in this field.

Doctor–patient Relationships and Care Quality

Health literacy affects many of the interactions that take place during treatment seeking and clinical encounters. The doctor–patient relationship is at the center of most health-care interactions. Patients receive most care instructions via doctor–patient interactions. Patients with low health literacy may not have the capability to understand or process spoken health recommendations that are not tailored to meet their needs (Jones, Lee, and Rozier 2007). In addition, cultural differences between patients and doctors can result in significant communication barriers (Adkins and Conus 2009). Because the doctor–patient interaction is how patients receive most of their care instructions, improvements to the communication and understanding between doctors and patients have the potential to improve care quality. One aspect of this is patients’ confidence and competence in their use of health information (Craig 2009). Barriers to health literacy in this context include the impact of illness on a patients’ cognition, inadequate medical knowledge, use of medical jargon, and medical uncertainty (Banja 2007). Providers must ensure patients understand instructions and treatment options by developing easily accessible resources and educating patients (DeMarco and Nystrom 2010). Craig (2009) states that patients must ultimately apply the medical knowledge they gain.

Patients with low health literacy may receive lower quality of care since they tend to be less proactive in communication regarding their health. Katz and colleagues (2007) found that lower health literacy is associated with asking fewer questions during medical visits, fewer requests for additional service, fewer requests for new information, and lower initial understanding. This may affect patients’ ability to learn about conditions and treatment options. Low medical literacy may lead to respondents’ not understanding questions from physicians about their health status and medical conditions (Al-Tayyib et al. 2002). As a result, they may provide incorrect or inconsistent answers about the same health condition. For example, respondents may answer questions about their health status with contradictory information about the medicines they currently take because they do not understand the questions asked. Those with low health literacy were less likely to seek other sources of information about their health and more likely to have low self-efficacy regarding health and health literacy (Shieh et al. 2009).

The perceptions of doctors also affect the quality of care they provide. Adkins and Corus (2009) found the relationship between doctors and patients is socially constructed and is affected by the capital of those involved and the field in which the interaction takes place. Providers may not give information or specifically tailored recommendations to caregivers of children with asthma who are perceived to have low health literacy (Wittich et al. 2007). This study found that doctors perceived that patients would be unable to understand a complex treatment schedule, such as following national guidelines for asthma management. This lack of understanding may lead to unnecessary morbidity and mortality as a result of poorly managed health conditions.

Preventive Behaviors and Treatment Outcomes

Health literacy affects treatment outcomes. People with different levels of literacy experience different health outcomes and different overall health status. For example, Angner et al. (2010) found that health literacy is positively correlated with happiness. Low health literacy may be a barrier to happiness-related behavioral health outcomes, such as self-reported happiness and life enjoyment (Angner et al. 2010). An Agency for Healthcare Research and Quality (AHRQ) Evidence Report on Literacy and Health Outcomes presents results from a systematic review of 73 articles addressing the following questions: (1) “Are literacy skills related to: (a) Use of health-care services? (b) Health outcomes? (c) Costs of health care? (d) Disparities in health outcomes or health-care service use according to race, ethnicity, culture, or age?” and (2) “For individuals with low literacy skills, what are effective interventions to (a) improve use of health-care services? (b) improve health outcomes? (c) affect the costs of health care? (d) improve health outcomes and/or health-care service use among different racial, ethnic, cultural, or age groups?” (Berkman et al. 2004:v). The results of the review indicate that low health literacy is associated with “several adverse health outcomes, including low health knowledge, increased incidence of chronic illness, poorer intermediate disease markers, and less than optimal use of preventive health services” (Berkman et al. 2004:vi). AHRQ updated this analysis in 2011. In the update, Berkman and colleagues (2011) found that among 81 articles examining health outcomes and 42 articles examining health literacy interventions, the relationship between literacy and outcomes was established with rigorous methods.

People with lower health literacy are less likely to engage in preventive behaviors (Bennett et al. 2009). Prevention is an important part of overall health outcomes. Engaging in prevention activities involves making conscious decisions about health care and condition management. Health literacy positively correlates with effective medical decision-making, instruction following, and condition management. Demarco and Nystrom (2010:294) state, “patients with low health literacy levels cannot make decisions regarding their health care or follow instructions on medications and health maintenance behaviors.” Several other studies relate these decision-making and instruction following behaviors to specific conditions. Poor health literacy ratings are associated with worse glycemic control and higher rates of retinopathy among patients with diabetes (Schillinger et al. 2002). Health literacy is positively correlated with measures of diabetes self-care activities and diabetic control measured by HbA1c levels (Tang et al. 2008). “Significant hypoglycemia was a frequent complication in this cohort of type 2 diabetes patients using anti-hyperglycemic therapies; those reporting limited HL were especially vulnerable” (Sarkar et al. 2010:962). Inadequate health literacy leads to older adults holding inaccurate beliefs about the nature of asthma and asthma management (Federman et al. 2010). Lower health literacy is associated with increased instance of chronic medical conditions (pain, low physical functioning, hypertension) and lower subjective health status (Kim 2009). Many patients with anxiety disorders do not seek treatment due to low levels of recognition and perceptions of symptoms (Coles and Coleman 2010). Lower health literacy is associated with patients not knowing what medications they take (Persell et al. 2007). This may lead to poor care coordination, increased medication errors, multiple prescriptions for the same symptom, less knowledge about appropriate medications, and providers’ lack of knowledge about medications a patient currently takes.

Low health literacy especially affects vulnerable populations, including children and homeless people. Children with parents who have high levels of health literacy have better outcomes related to child health promotion and disease prevention (Sanders et al. 2009). In a study of low-income families, children with mothers who had adequate to high health literacy were twice as likely to be enrolled in Temporary Assistance for Needy Families (TANF) as mothers with poor health literacy (Pati et al. 2010). TANF could provide the family with resources necessary to maintain positive health status. Low literacy levels affect the medication use for children of homeless mothers (Sleath et al. 2006). Low health literacy especially affects homeless populations, which are more likely to have poor health status and utilize more services (Fetter 2009). This is especially a problem since homelessness is associated with mental health issues and addiction.

Health Information Usage

Information recall is an important aspect of health literacy that influences care quality and health outcomes. Health literacy may be the mechanism that exacerbates health disparities between different populations because of variations in recall of physician instruction (Ayotte et al. 2009). Health literacy was a significant moderating variable between financial status, race, and education and health information recall (Ayotte et al. 2009). Health literacy, especially with regard to print literacy, is an important moderator when discussing race/ethnicity and education-based disparities in health status (Bennett et al. 2009). Howard et al. (2006) found health literacy accounts for some of the variation in health status and receipt of vaccinations that would be attributed to race or education if literacy were not measured. Literacy is a significant moderating variable for indicators that are important to health-care disparities, especially race and education (Sentel and Halpin 2006).

Interventions

Health literacy interventions typically include making materials more accessible and consulting with patients to ensure understanding of treatment options, treatment regimens, and instructions and recommendations. Health encounters must shift from an interaction based on doctors prescribing to patients, to an interaction between doctors and patients that builds partnerships and self-efficacy regarding health behaviors (Abrams et al. 2009). In a study by Hess and Whelan (2009), medical students valued learning the importance of health literacy and the difficulty of communicating in language patients understand. Health literacy interventions should recognize that problems with health literacy go beyond an individual medical interaction. Solutions involve social justice and evidence-based medicine, including targeting literacy and health literacy in schools to reduce the population of poor and nonreaders (Fetter 2009). Solutions should also involve increasing social desirability of seeking more health information and advancing literacy skills (Sheih et al. 2009). The AHRQ Evidence Report on Health Literacy and Outcomes found that although many health literacy interventions show promise for improving health literacy and, therefore, associated health outcomes, more rigorous methods are required to better define the relationships and understand the mechanisms by which the interventions work (Berkman et al. 2004).

Simple language

Several interventions have been designed to make health materials easier to understand. One intervention included developing materials based on the patient’s language competency, cultural identity, and empowering the patient in the health-care setting (Adkins and Corus 2009). An intervention conducted by Abrams et al. (2009) found using simple language in reader-friendly print materials improved health literacy. Simple language in communications, such as drug labels, measuring devices, and written and verbal communications and instructions, can lower medical errors and improve patient safety (Abrams et al. 2009). Abrams and Earles (2009) found that making consent forms readable at a low literacy level ensured patients can make fully informed health-care choices. Designing health information and materials to have appropriate literacy levels for different population groups increases the overall quality of care.

Increased patient–provider interaction

Other interventions have been designed to improve patient–provider relationships. These improvements can increase the likelihood that patients will make informed choices about their care options and fully understand care instructions before leaving the health-care setting. Improving health literacy can be done through asking patients what they have been told so far, asking patients how they would like to receive health information, checking to make sure patients understand, using simple language, making sure the patient has input, and following up with patients (Banja 2007). Rothman and colleagues (2009) discussed an intervention that included individualized communication for patients with low literacy and disease management by a multidisciplinary team. Intervention patients with low literacy were more likely to implement effective diabetes management and to have blood indicator levels in acceptable ranges (Rothman et al. 2009). An intervention discussed by Paasche-Orlow and colleagues (2005) included patients receiving individual consultations at discharge and guidance about their treatment regimens after discharge. The intervention was found to reduce health literacy-associated differences in asthma management (Paasche-Orlow et al. 2005).

Providing patients with appropriate information

A final element the interventions found in this literature review was ensuring patients have the information they need to effectively navigate the health-care system. If patients have more health-related information, they can make better decisions about their own care regardless of literacy level. Most respondents of a study conducted by Beaudoin et al. (2011) responded positively to “information prescriptions,” which were referrals to materials related to their condition on the Genetics Home Reference website. This can be expanded to other settings, conditions, and information sources to increase overall medical literacy. Brower (2010) recommended using open access journals that do not have royalty fees and make information more available. This lowers the costs of information collection and dissemination. In another study, consumer health librarians offered a way to disseminate information in multiple settings and conducted free public education sessions about health literacy (LaValley 2009). Audiences for the education sessions as part of this intervention included adults and children. As a result of this intervention, the adults took a more active role in their children’s health and had easier communication with health information sources. At the end of a school-based health literacy intervention, 48 percent of participants reported feeling confident in their evaluation of web-based health information compared to 18 percent at the start (Kurtz-Rossi and Duguay 2010). The authors report that 65 percent of participants were confident in their ability to share health information with others.

Freire and Theoretical Grounding

Freire perceived education as empowering learners in their personal and communal lives. Initially, he examined the situation of the oppressed and sought to identify a liberatory process of education to empower students to address their own oppression. By extension, the process of liberatory education can be applied to health literacy as a means of creating a liberatory health literacy. Freire used the term conscientização to summarize the process by which this happens. Conscientização, or awareness, empowers people to identify the power dynamics in their daily relationships and engage more in their life decisions through self-reflection. Once people become aware, they can make better health decisions and take an active role in improving their health and well-being. As applied to health literacy, popular education pedagogy aims to empower patients to recognize that they are the most powerful agents in health-care decision-making. The foundation of Freire’s pedagogy is building people’s educational experiences on their lived experiences. The first step in this process is for educators to help people analyze and articulate their lived experience. For health literacy, this includes helping people understand the broad range of activities, experiences, and behaviors that affect health status, both short- and long term.

Freire discussed how education and lifelong learning become activities of conscious individuals within society. Literacy empowers individuals to analyze circumstances and plan actions to change them (Freire 2006). When you teach a person to read and write, you are teaching that person to name the world (Freire 2006). When you teach someone health literacy, you are teaching that person to name and understand his or her body and its relationship with the world. According to Freire, “[T]he educator’s task is to encourage human agency” (Aronowitz 2001:10). The goal of health literacy should be teaching a process of investigation as a way of transforming the patient into “a knowing subject, to become capable of comprehending and of communicating what has been comprehended” (Friere 2001:106). This also ensures a more sustainable health literacy that the newly aware patient can then pass on to others. This dialogical process creates the connections between health practitioner, patient, and community. The desired impacts would then strive to see not only individual health behavior change but also community and possibly national health behavior change.

Freire saw traditional literacy education as a “banking model,” in which people passively receive facts and information from a teacher. The banking model of education frequently applies to health literacy. In clinical encounters, patients are often told what is wrong, what they need, and how to fix it, with little opportunity to provide input or to apply their own background and perspective to the educational process. Freire referred to this as “narration sickness” (1989:57). This structure of education and health care is based on an authoritative hierarchy in which the teacher/health-care provider is the possessor of knowledge that she or he conveys to students/patients (Freire [1970] 1989). Freire asserts that literacy requires students to recognize the connection between literacy and the ability to analyze, discuss, and change the world. To accomplish this, Freire reinterpreted and restructured the relationship between the student and the teacher to be based on collaboration and mutual participation (Freire [1970] 1989). The teacher must learn from the students or become a teacher–student, and the students must also teach the teacher or become student–teachers. Teachers ask students about their lives, their environments, their understanding of the world, and they transcribe students’ responses to the written word in order to demonstrate the value of literacy.

Applying this to health literacy, educators, providers, and patients must work together to create a holistic health plan for the patient that not only uses the health-care practitioner’s expertise but imparts this knowledge to the patient in a way that enhances health literacy and engages the patient in active decision-making regarding personal and community health. Conversely, the health-care practitioner must acknowledge and understand that the patient is expert in their own lived health experience and as such the agent through whom health behavior is accomplished. Integral to this restructured relationship is the process of dialogue “whose goal is social as much as individual change” (Aronowitz 2001:8). In the proposed approach to teaching health literacy, health is considered a critical aspect of the patient’s life that the patient, educator, and provider pursue together. Patients must learn that health-care providers cannot provide treatment without patient input, guidance, and consent, and that health-care providers can only address patient needs if they understand their experiences and community context. Health-care providers must learn that patients are the agents with primary responsibility for their own health and that a shared perspective is necessary for patients to choose to adhere to and benefit from clinical recommendations. In engaging patients in dialogue rather than simply prescribing treatment or conveying information, health-care providers would engage patients in dialogue to gain understanding of patients’ concepts of health, health priorities, perceptions of factors that affect health and what controls these factors, perceptions of health behavior and service options, and expectations regarding clinical encounters. Health-care providers would communicate with patients in a manner that reflects understanding of patients’ perspectives and values. Providers would actively seek patient input throughout the process of developing clinical recommendations. They also would explain the process of seeking information to develop recommendations and demonstrate the centrality of health literacy in health decisions. This approach is expected to motivate patients to increase health literacy.

For example, rather than simply instructing a patient at risk for diabetes to lose weight, a provider, or clinical team, would solicit information about why a patient has become at risk. Potential factors could include lack of access to healthy food, lack of information about healthy diet, lack of understanding of health risk associated with high body fat, and/or lack of knowledge about the threshold for high body fat. Applying Freire’s approach, a provider would elicit information about these factors, engaging the patient as a collaborator in assessing his or her health status. This process would provide the provider with an understanding of how the patient is likely to understand information about health, risk, and choices. The provider would then be able to communicate with the patient about diagnostic testing, risks and advantages associated with behavioral choices, and options for preventive care and treatment. The provider would treat the patient as an essential partner in this process, demonstrating the value of understanding each step and supporting the patient in pursuing the knowledge necessary for making decisions that reflect his or her health priorities.

Using Freire’s approach, educators would convey that health choices and outcomes occur in social, political, and economic contexts. Effective health decision-making entails understanding these factors and the patient’s own ability to respond to and change them individually and as part of a community. Freire emphasized the importance of encouraging students to become teachers within their communities. By developing a culturally relevant perspective on the value of health literacy and learning the skills to obtain health information, patients can teach health literacy by example, and communicate what they have learned to others. For example, the patient in the example above could discuss how zoning policies and economic factors have made the neighborhood a food desert and then collaborate with community leaders to change policies and consider economically feasible ways to access healthy food choices.

Applying Freire’s framework offers a more expansive view of the current patient-centered care model. Current models involve requesting medical information and health history (Barry and Edgman-Levitan 2012). A Freirian model involves expanding this discussion to a broader understanding of the social and economic conditions that affect health outcomes and health services, such as built environment, access to healthy food and health services, social relationships and discrimination, broad economic factors (job type, employment stability, income level, etc.), and variations over time. In Freire’s model, change expands from the individual to the community. Individuals become leaders who affect health-related resources and options in their communities.

A Freirian model includes the assumptions of patient-centered care, in which the patient is the provider’s partner in health-related decisions. An individual can make choices regarding treatment options, such as new, experimental approaches versus established standard of care or complementary medicine. However, the choices available are determined by broader factors such as social influences, proximity to health-care facilities, insurance policies and regulations, and environmental hazards. An individual patient, or patient–practitioner dyad, can do little to affect choices available and these broader factors. This level of change requires community action. The proposed model of health literacy education seeks to increase community-level awareness of health-related needs and of how to change the community environment to achieve broader, long-term improvement. A Freirian model further expands the patient-centered care model to involve community organizing around the social and environmental impacts on health outcomes. This involves training providers to incorporate discussions of these contexts in clinical interactions. This requires health providers to have ongoing, long-term relationships with the communities they serve and to use these relationships to discuss the social and environmental circumstances that lead to adverse health outcomes. We propose using the health literacy promotion efforts already developed and tested, such as clear communication, simple language, and checking for patient understanding to enhance civic literacy and community-level change.

Our proposed model and suggested implementation for a Freirian health literacy envisions the process of health literacy as a process of lifelong learning as the activity of conscious patients within a larger society. It involves the unity between health behavior and reflection on the world (Freire 2006). This relational model of health literacy addresses the failures of a “banking” system of health literacy that is critiqued in the same way as traditional education because it creates and maintains “the Fragmentation of skills and bodies of knowledge … creates the inability to make linkages, and … it deadens the senses” (Macedo 1994:17).

Education Issues

The following section identifies issues that should be addressed by health literacy interventions. This section also discusses principles that must be considered when democratizing power in the provider–patient or health educator–student relationship. This discussion will provide the foundational tenets of the proposed curriculum structure.

Educating People for Health

Current epidemiological models have proposed an understanding of health outcomes as a result of a wide range of lived experiences. One such model from Krieger discusses the concept of embodiment, which posits that everything a person does or experiences will affect his or her health status over time (Krieger 2011; Krieger and Smith 2004). This means that people who engage in unhealthy behaviors and/or are surrounded by adverse environments will have worse health status than those who do not. O’Campo and Dunn propose an epidemiological model that links social contexts and structures with a traditional disease vector understanding of health outcomes. This includes conceptualizing health status as a product of macrosocial factors, including social policies, public policies, and culture as well as individual and proximal social risk factors (Dunn 2012; O’Campo and Dunn 2012).

Applying this concept to Freire’s approach, educators must encourage people to understand their health in terms of all their experiences, environments, and behaviors. Engaging people by relating health literacy education efforts to lived experiences provides the foundation for educational efforts by providing relevant information that will make people more likely to care about these topics. Concern about these topics increases likelihood of engaging in positive health behaviors and improved health status.

Education sessions must teach people about issues that influence the power dynamic in the patient/provider relationship, such as the importance of patient participation in health-care planning and decision-making. People must be able to describe their health issues in ways that are clear to themselves, their peers, and their providers. This includes developing a basic understanding of medical terms, biology and anatomy, and chemistry regarding the mechanisms of common treatments.

Another educational objective is to help people understand the economics of the health system. The contemporary health system is based on multiple complex economic relationships among several stakeholders. Helping people understand the ways in which they can interact with the system is an important part of improving health literacy. Including these topics as part of education interventions will help participants have a more comprehensive understanding of the reasons they encounter the health system in the ways they do and the material conditions of the health system. This includes insurance and fees for service, the economics of doctor visits, the costs for specialist services, and the costs of treatments as compared to the costs of preventive behaviors and services. Understanding these will help people make decisions and plans as individuals and communities.

Helping people understand the health system they encounter builds on the work of Zaracadoolas, Pleasant, and Greer (2006) who propose a multicomponent model of health literacy that includes fundamental science, civic, and cultural literacy. Scientific literacy includes knowledge about and comprehension of basic scientific terms, understanding technology, and understanding scientific complexity and uncertainty. Civic literacy includes judging the source of information, media literacy skills, awareness and understanding of civic and governmental systems and processes, awareness of issues related to power and inequity, and awareness that personal behaviors and choices affect others in a larger community and society. Cultural literacy includes understanding collective knowledge, attitudes, beliefs, worldviews, and social identities. Our proposed model is to apply Freiere’s approach to improve all three literacy components. By addressing civic and cultural aspects of literacy, educators and community members are expected to improve health communication as well as policies and environmental factors that affect health. This is accomplished through supporting people in learning about health and broader factors that affect health. They in turn teach what they learn to other community members and identify actions they can take as a community to improve factors that affect individual and public health.

Freire emphasizes the idea that people must use and apply information they learn during education sessions in interactions with their peers and the community with the aim of improving the community. He focuses on the importance of community involvement and using the information that learners gain to foster social support and community cohesion (Freire [1970] 1989). Educators must empower people during the education sessions to affect their own health status, to disseminate the information to the people they know, and promote community cohesion around health care through sharing experiences and information, and by teaching positive health behaviors by example. Health literacy interventions must include elements that help participants share the information they learn with their peers in their social networks. The participants will become teachers of health literacy themselves and lead efforts in their respective communities to improve health status and outcomes.

Educating Health Educators and Providers in Relation to the Community

Educational interventions must help providers and health educators to understand the importance of knowing the conditions of the community and lived experiences of members. Providers comprise all people who directly provide health-care services including physicians, nurses, physician’s assistants, social workers, and complementary and alternative medicine (CAM) practitioners. Health-care providers and educators must use their technical knowledge to support people in becoming their own health managers. This will include presenting prevention and treatment recommendations using language and examples that reflect patients’ lived experiences.

Clinical encounters typically last no more than 15 minutes. In order to apply the proposed model, providers must interact with the service community outside these encounters. Further, it is critical that providers participate in ongoing education regarding effective provider–patient communication and culturally competent care. While providers are critical sources of health information, the proposed model relies on community-based health educators and other nonprovider health advocates.

Currently, health literacy interventions focus on teaching providers clear communication techniques, supplying providers with simple language publications, and teaching providers how to ensure people understand what they recommend and prescribe during their interactions (Abrams and Earles 2007; Abrams et al. 2009; Adkins and Corus 2009; Banja 2007; Beaudoin et al. 2011; Berkman et al. 2004; Brower 2010; Kripalani and Weiss 2006; LaValley 2009; Mackert, Ball, and Lopez 2001; Paasche-Orlow et al. 2005; Rothman et al. 2009). The Institute of Medicine (IOM) emphasizes that health literacy is essential for reducing health disparities and facilitating patient-centered care. IOM (2013) released a report describing “health literate organizations” that discusses the importance of clients’ health literacy. The report offers practical recommendations, such as easily accessible and readable information materials, that would be part of the proposed model. In addition, it acknowledges the importance of clients’ understanding information about treatment and care coordination. However, it presents a relatively prescriptive model that emphasizes the importance of clients’ understanding and adhering to instructions, rather than being fully informed decision makers and educators. Some agencies such as the AHRQ offer resources, such as training videos and tool kits, that describe how providers can better serve patients with limited health literacy (DeWalt et al. 2010). The emphasis on AHRQ tool kits and others with a similar emphasis is limited to Zarcadoolas and colleagues’ fundamental and science components of health literacy (2006). Other approaches emphasize expanding providers’ cultural competency (Betancourt et al. 2005). The proposed approach builds on these efforts to improve patient understanding of medical terms and procedures and also emphasizes the role of the patient as an educator who teaches providers about his or her needs, choices, and perspective. In addition, when the patient is not satisfied with available options for prevention and care, health educators and providers support the patient in joining with other community members to expand those options.

Democratizing Power

The first element of democratizing power is to make the relationship between people and providers more collaborative. This idea is supported by the Healthy People 2020 initiative, which seeks to increase the doctor/patient collaboration in the treatment decision-making process (U.S. DHHS 2010). The educators leading the intervention to implement Freirean principles will present evidence-based information, and the content and proceedings of the sessions will develop based on the lived experiences of the community. This will require health educators to seek input from the community in their education sessions to ensure the content they present is relevant to the participants. It also will require community members to take an active role in sharing their lived experiences and in guiding the content and proceedings of the sessions. Health educators and students can work together to learn from each other to improve the quality of the sessions and the health literacy levels of the community.

There are three components that will shift the perspective of each group and potentially democratize the power of the health-care relationship. First, providers and community members must work together to make health and health care more accessible and to improve people’s comfort with positive health behaviors and the health system. This includes helping people to understand basic biological mechanisms of health status and outcomes, an understanding of treatments, and the evidence systems that support care recommendations. Improving basic understanding of the health system and health care will help improve people’s confidence, when they interact with providers and the health system (Duran et al. 2013; Israel et al. 1994; Israel et al. 2013; Israel et al. 1998; Ramirez, McAlister, Gallion, Ramirez, et al. 1995; Ramirez, McAlister, Gallion, and Villarreal 1995).

Second, both community members and providers can develop a more holistic view of health, such as understanding health behaviors to include the wide range of behaviors and contextual factors that influence health. This also will include helping both groups understand a wider range of treatment options. These wider definitions of treatment will involve perception changes from both groups. Health literacy students may expand their trust of evidence-based procedure. Providers may expand their understanding of treatment beyond what the medical institution offers to include complementary and alternative treatments, when those topics and ideas are salient to the people they treat (Dearfield and Pugh-Yi 2011). By developing this holistic view of health, both groups will have a more comprehensive and analogous understanding of health status and outcomes and treatments from which to communicate about health care.

Third, patients and providers must understand that their actions and decisions may have consequences that are not immediately apparent. Most of the contemporary leading causes of death in the United States are chronic conditions (CDC n.d.). Ecological epidemiologic models provide an understanding of these conditions that includes political, social, and economic factors that affect a person’s health status over time. Education sessions for community members should inform people about the nature and potential risk factors of these conditions and the evidence-based preventive approaches to managing them. Education sessions for providers should focus on helping them apply their medical knowledge and understanding of the actions that lead to chronic conditions to support decisions associated with desirable health outcomes.

Education Methodology

This section describes steps for developing a community-based health literacy education program and associated curricula based on Freire’s principles.

People’s Education and Empowerment

In developing an effective health literacy intervention, administrators must identify and define a community, identify community-based educators, and research the historical contexts of that community. Intervention designers must conduct needs assessments that consider the historical contexts of the community. This includes assessing health status and outcome indicators for the specific place and time and economic and social relationships. The needs assessment process must include primary and secondary data collection in which interviews and surveys supplement large-scale health or population surveys, such as the U.S. Census or the behavioral risk factor surveillance system. Needs assessments should be ongoing throughout the intervention process. Intervention administrators must select educators from the community. Having education leaders whom the participants respect and identify with will improve efficacy (Freire [1970] 1989).

Once the intervention framework is in place, intervention administrators must recruit participants from the community. Administrators can first recruit community members to facilitate and guide recruitment. These community members may include educators, health-care providers, and members of the community with extensive communication networks. The last group may include locally elected officials, merchants, teachers, and service providers. Recruitment messages and incentives must be tailored to the community.

Initial education sessions must include discussions of lived experiences. Educators need to help people understand how their daily activities, behaviors, and exposures relate to health and health care. This includes providing information about the nature of chronic conditions and the cumulative effects of behavioral decisions. It also includes an expanded view of what constitutes health care. The sharing of lived experience must be an unstructured activity at first. During this discussion, educators will gather information about which elements of health and health care are most salient to the participants in each session. This will include the educator posing questions about community members’ lived experiences as related to health.

Based on participants’ experiences, educators will develop a curriculum on health behavior and knowledge. The curriculum will include health literacy topics and specific information on conditions and issues that are most salient for the participants. For each condition, the participants identify as a prominent issue in their community, educators must develop a curriculum that helps people understand the basic biological mechanisms of the condition, preventive behaviors and why those behaviors reduce the risk of development or exacerbation of the condition, appropriate types of screens and suggested screening intervals, risks and hazards associated with potential treatments, and how to navigate the multiple appointments and specialists associated with diagnosis and treatment. The education sessions must discuss how to engage providers and how to express patients’ priorities, values, and questions. People with this information can evaluate treatment options more effectively.

The final element of the education sessions is information and resources for participants to disseminate to their communities. This element is based on the train the trainer and community-based participatory research interventions that already exist in the health-care field (e.g., Team Strategies and Tools to Enhance Performance and Patient Safety, administered by the AHRQ (n.d.). The participants must be encouraged to take what they learn as part of the health literacy education sessions and disseminate that information to their social networks. The peer education section must include information resources in easily understood formats, suggestions that deal with how to approach, engage, and talk to peers in the community, references to other health information resources in easily accessible formats (including print and digital), and support from educators to encourage peer discussion and education about health literacy.

Provider Education and Training

Intervention administrators must identify and recruit health educators and providers from the community, to ensure they are credible to participants. Providers will offer insight into the community’s highest priority health issues. They will provide information about the most prevalent conditions, treatment options, and community economic and social conditions.

Education sessions should emphasize how collaborative relationships with patients can foster more active community engagement. Sessions can provide information about how to build trust. This includes describing ways providers can take an active role in discussing treatment recommendations with their patients. After some initial interactions with people in their communities, providers and educators can discuss community action with their patients. The primary goal of the educator and provider training sessions is to help participants foster community empowerment. The curriculum for educators and providers must include the following elements: instruction on how to avoid the banking model of education, instruction on how to develop a more collaborative education or care relationship, and information about how people in the community view medical care and how to discuss culturally relevant preventive and treatment procedures. Educators and providers will need to be taught the Freirean concepts of collaborative learning and basing information dissemination on lived experiences.

Providers can promote community education efforts by encouraging people to share information with their friends and families. Education initiatives must offer providers information resources in easily understood formats, a framework for how to talk to people in the community regarding community improvements and collective action, references to other health information resources in easily accessible formats, and support for their patients to encourage peer discussion and education about health literacy. Offering people these resources must be an ongoing process based on constant teaching and learning from educators, care providers, and patients.

Implementation and Training Procedures

Freire is cited in hundreds of articles on education and literacy for phenomenal pedagogical success in increasing literacy among disenfranchised communities. Examples cited include work from Macedo and Hooks (Freire and Macedo 1987; Hooks 1994; Macedo 1994). While the works of Freire and his students describe examples of success and provide extensive detail of theoretical underpinnings, descriptions of the steps Freire followed to implement his interventions were not found in literature reviewed for this article. Freirian scholars note a lack of both process and outcome data (Elias 1975; Gibson 1994). The few resources published as resources for educators who intend to apply Freire’s theory are disseminated passively, with the assumption that educators will seek them out. Elias (1975) describes four general stages of implementing a Freirean literacy intervention: (1) studying the community context, culture, and language, so that the educator is familiar with students’ language and experiences; (2) selection of generative words, which will support students in learning new words and be useful for describing social, political, and economic context; (3) literacy training, in which teachers use pedagogical methods to teach students skills such as decoding while connecting the learning process to awareness of one’s sociopolitical environment and the power to affect it; and (4) “postliteracy,” in which students teach their literacy skills to other community members and apply them to achieve change. We propose the following approach to applying this specifically to health literacy as a way to depart from banking model interventions described above:

A team of project initiators comprising at least one expert in public health and one community leader determines that a community could benefit from improved health literacy

Researchers conduct a community health needs assessment that includes analysis of epidemiological, demographic, and ethnographic data. The needs assessment must be a collaborative effort involving a wide range of community members and organizations. This will help researchers, health-care providers, health educators, and community members begin an equitable collaboration process, and encourage long-term health promotion collaboration. Data will include indicators that seek to identify community strengths and resources and that are beneficial for community members and organizations, as well as researchers.

Researchers identify key sources of health information in the community, assess how people learn about health issues, and what sources are considered credible.

Researchers invite recognized community leaders and health educators to participate in developing health education training for their community’s specific needs. Health educators are expected to include providers, social workers, community service providers, clergy, promotoras, patient navigators, alternative medicine providers, as well as accredited health educators. Key community leaders include groups that effectively disseminate information to large sectors of the community. They may include groups not formally associated with health education but who are often considered credible information sources such as barbers and school teachers.

Researchers offer training in Freire’s pedagogical approach to health educators, using Freirean methods that invite participants to offer their own expertise to guide discussions and training approaches. This step will include discussions about how to teach students to educate their peers and to use knowledge to achieve broader change. Training will emphasize presenting community members with basic skills and resources that will enable them to identify potential issues that affect health and health-related choices as well as approaches and mechanisms for influencing policy. Potential issues may include exposure to environmental hazards, access to health-care facilities, affordability of treatment options, and access to basic health needs such as food and housing. Ways of effecting change may include letter writing campaigns, town hall meetings, media events, meetings with elected officials, boycotts, and counteradvertising.

Researchers, under the guidance of health educators, collect qualitative data from community members regarding their needs, experiences, and priorities.

Researchers coordinate community leaders’ and educators’ efforts to develop curricula and pedagogical approaches designed to address community needs.

Researchers support health educators in implementing the new curricula and pedagogical approaches. Support includes documenting implementation processes and measuring program outcomes, including the four components of health literacy, participants’ efforts to educate peers, and efforts to change factors that affect health and health-related choices. This step includes defining the roles of service providers, educators, and clinicians in developing reciprocal student–teacher roles with community members and in conveying information that increases community members’ health literacy.

Community members who participate in health education efforts teach literacy skills to their peers.

Community members identify health priorities and issues and changes they would like to make and act collectively to effect change.

Researchers provide continuous evaluation data to educators and community members regarding the effectiveness of intervention components and community efforts.

Researchers continue to review epidemiological and demographic data to inform community health needs assessments.

Researchers provide suggestions for disseminating results and translating the interventions across different settings and communities, with input from community members and organizations.

Within this process, we propose the following roles:

Doctors, nurses, physician’s assistants—engage with community and offer health-care advice based on patient needs and help people identify the root causes of their health outcomes with the help of researchers. Nurses and physician’s assistants would have an engagement role and physicians would have an advising and treatment role.

Social workers, promotoras, CAM practitioners—engage with people, help people discuss their life experience and help them understand how they are experts of their own experience and community, help people understand their surroundings, help people engage with providers and their communities, and educate clinicians about cultural perspectives regarding health and health care.

Navigators—help people navigate and understand the existing care system, including how it could be changed.

Health educators—help teach the specifics of health literacy and offer suggestions for interventions and community activities.

People in all of these roles can initiate and engage in conversations about the social, environmental, economic, and political determinants of health outcomes in their communities.

The Patient Protection and Affordable Care Act (ACA) includes provisions that offer incentives to health-care providers and institutions to engage with their patients. Medicare Accountable Care Organizations payments to providers are contingent on reducing costs while meeting performance standards. Incentives to providers are structured to encourage them to avoid the necessity of providing costly treatment by encouraging preventive care. The proposed educational approach would support efforts to encourage patients to choose preventive behaviors and utilize clinical preventive services. It also would support communities in reducing environmental risks and developing policies that support prevention. This could result in reduced Medicaid and Medicare costs. Potential savings will increase with the expansion of coverage provided for in ACA (Centers for Medicaid and Medicare Services [CMS] 2013).

Conclusion

Health literacy interventions have the potential to provide the impetus for community health engagement and empowerment. Developing a health literacy intervention that includes elements of collaboration between community members and health-care providers must start with an expanded view of lived experiences of both groups. From these experiences, educators can help the groups come to mutual understanding of each other and of individual- and community-level health needs. Further, health-care providers and community members can develop a more collaborative view of health and seek to transform the correlates of adverse health outcomes in their communities by ensuring providers understand community members’ lived experiences and how they affect perceptions of health and health decisions. This has the potential to shift health literacy interventions from a banking model of education to a collaborative and transformative effort.

The expected outcomes of teaching community members and providers to adopt this system of disseminating health information and collaborative care include greater engagement in personal health decisions for people in the community, health-care providers taking a more active role in the community they serve, and a greater sense of collaboration for community health improvement. This can result in contextual changes, including shifts in the material conditions of health care that result from collaborative care and community empowerment. As both groups learn to identify these conditions, they become better positioned to change those conditions.

Footnotes

Acknowledgment

We acknowledge the contributions of Walda Katz-Fishman, Jennifer Bronson, Karyn Pomerantz, and Roberta Hollander who participated in discussions with the authors about the ideas in this article. We also acknowledge participants at the George Mason Public Sociology Graduate Conference for contributions during a presentation.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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