Stigma and Health Literacy: An Agenda for Advancing Research and Practice Michael Mackert, PhD; Erin E. Donovan, PhD; Amanda Mabry, MPH; Marie Guadagno, MS; Patricia A. Stout, PhD Objectives: To propose a framework addressing various factors contributing to stigma associated with low health literacy, how stigma is manifested, and how it may contribute to adverse health consequences. Method: The framework incorporated concepts found in existing empirical research on stigmatized health conditions with an emphasis on concealable conditions such as mental health, HIV status, and some chronic illnesses. Results: Pursuing the proposed research agenda would provide a better understanding of the various factors contributing to stigma associated with low

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tigma has been the focus of health and communication scholars in contexts ranging from physical deformities to mental health. Defined as an attribute of a person that is “deeply discrediting,”1, p.3 stigma can impact members of particular ethnic and social groups. As such, stigma could be seen as an underlying issue permeating health, the delivery of healthcare, and communication across a variety of issues. Similarly, health literacy can be seen as a foundational determinant of health driving a range of issues – from management of chronic conditions to interpersonal interactions with healthcare providers.2 Scholars have not considered the stigma associated with health literacy fully, however, and we believe doing so is a crucial step toward improving the ability of the healthcare system to address problems associated with health literacy. This paper proposes an agenda for research focused on the stigma associated with health literacy. Health literacy is an individual’s ability to obtain, Michael Mackert, Associate Professor, Department of Advertising, The University of Texas at Austin, Austin, TX. Erin Donovan, Assistant Professor, Department of Communication Studies, The University of Texas at Austin, Austin, TX. Amanda Mabry, Graduate Student, Marie Guadango, Graduate Student, and Patricia A. Stout, Professor, Department of Advertising, The University of Texas at Austin, Austin, TX. Correspondence Dr Mackert: [email protected]

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health literacy, how that stigma is manifested, and how it may contribute to adverse health consequences. Conclusion: The goal of proposing a wide-ranging research agenda is to encourage research that will inform the development of a comprehensive framework that addresses factors that influence stigma associated with health literacy from multiple levels: micro, meso, and macro. Key words: health literacy, stigma, health disparities, health outcomes, health communication Am J Health Behav. 2014;38(5):690-698 DOI: http://dx.doi.org/10.5993/AJHB.38.5.6

process, and act appropriately on health information.2,3 Between one-third and one-half of adults in the US struggle with health information, and the elderly, members of ethnic minorities, and those of lower socioeconomic status are less likely to have adequate health literacy.2-4 Individuals with low health literacy have more frequent and longer hospitalizations, greater difficulties managing chronic health conditions, and lack the requisite skills to navigate the healthcare system.5-7 That there is stigma associated with health literacy is not unrecognized. Research has shown that low literacy and illiteracy are associated with stigma and poor self-esteem.8,9 Patients shown to have low health literacy often hide the problem from family members10 and may not seek healthcare services as a result of their embarrassment.11 Mackert et al12 recognized elements of stigma associated with health literacy, as some members of the general public discussing a complicated health issue seemed to equate lower health literacy with what was deemed a blemish of individual character (ie, low intelligence). The purpose of this paper is 2-fold: to bring attention to the issue of stigma as it relates to health literacy and to propose an agenda for advancing research on the stigma associated with health literacy. The remainder of this paper discusses relevant literature as it relates to health literacy and stigma associated with specific health issues. Building on a specific model of

Mackert et al stigma associated with mental health, we propose an agenda for investigating the stigma associated with health literacy and discuss the implications for both research and practice. Health Literacy Health literacy refers to an individual’s ability to obtain, process, and act appropriately on basic health information.2,3 Many US adults face challenges understanding health instructions, such as patient information brochures and prescription medication instructions.2-4 Low health literacy can lead to poor health outcomes due to the individual’s lack of comprehending a health professional’s directions.13-16 Individuals who are low in health literacy also may have problems communicating with healthcare professionals, leading to further misunderstandings.17 The implications of low health literacy on both public health and the US economy are considerable. The US healthcare system incurs an estimated $106 billion per year on problems encountered by individuals with low health literacy.18 Future costs of low health literacy are estimated to be more than $1.6 trillion.18 This substantial economic burden is caused by revisits to physicians, non-adherence to prescribed medication, longer in-patient hospital stays, and a general lack of understanding the healthcare system.5,7,19 In addition to the economic costs, low health literacy can exacerbate problems in managing chronic health conditions such as hypertension, high cholesterol, asthma, HIV/AIDS, and cardiovascular diseases.20-22 Typically, chronic health conditions require adherence to a prescribed medication regimen, which low health literacy can impede. Individuals with low health literacy who are taking more than one medication also can have difficulty understanding potential drug interactions, which could lead to adverse health outcomes.23 To conceptualize the construct of health literacy further, Zarcadoolas, Pleasant and Greer17 explicated 4 dimensions of healthy literacy: fundamental literacy (ability to read, write, and use numbers), scientific literacy (ability to understand technology and scientific processes), civic literacy (ability to understand relationships between personal and public health issues), and cultural literacy (ability to understand different cultures and customs as they relate to health). This conceptualization takes into account a range of factors, from mass media to interpersonal communication and culture that can affect an individual’s level of health literacy, and is, therefore, useful on considering research on stigma associated with health literacy.

it remains one of the most influential perspectives guiding scholarship on stigma, social identity, and prejudice today. In contemporary social scientific research, stigma constitutes a physical, mental, or moral defect. It is a difference that renders a person undesirable for social contact or affiliation. Stigma is a visible or metaphorical mark that separates discredited persons from those who are considered acceptable—referred to by Goffman as “normals” who do not possess the discrediting trait. “By definition, of course,” Goffman wrote: “we believe the person with a stigma is not quite human.”1, p.5 Stigmatized individuals absorb an understanding of standards for an acceptable identity, based on the norms of society. The stigmatized face various forms of discrimination, from normals and also sometimes from each other. Goffman1 delineated 3 types of stigma: (1) abominations of the body, which are physical deformities such as a facial disfiguration; (2) blemishes of individual character, which are associated with repellent personality traits, mental health conditions and addictions, and behaviors that suggest ethical aberrations that range from mild (eg, dishonesty) to extreme (eg, committing a gruesome crime); and (3) tribal associations, which are stereotypes that contaminate the members of particular racial, ethnic, religious, or social groups. Stigma is connected to communication, as it arises during social interaction. Goffman’s1 own primary focus was on the attitudes, beliefs, and behaviors that normals directed toward those who were stigmatized. Stigma may be enacted when normals actually discriminate against the stigmatized. It also can be felt or perceived regardless of whether any judgment actually has occurred and even anticipated ahead of interactions. Goffman1 theorized that communication between stigmatized individuals and normals is inherently challenging as people grapple with the judgments they make about others or they perceive others to be making about them. Stigmatized persons may experience uncertainty about how others will categorize and define them; they may interpret communicative cues as judgmental.24 People will look for ways to manage their uneasiness—for example, stigmatized others may be motivated to conceal discrediting information (and try to “pass” as normal). They will sometimes attempt to repair their defect, for instance, by having corrective cosmetic surgery or undergoing therapy. Alternatively, they may become models and spokespersons who demonstrate that the stigma can be overcome.

Stigma in General Sociologist Erving Goffman1, p.3 defined stigma as “an attribute that is deeply discrediting.” His seminal monograph entitled Stigma: Notes on the Management of Spoiled Identity is a classic analysis of stigma, identity, social interaction, and prejudice;

Stigma and Health Outcomes Stigma research has been conducted on a variety of health conditions from obesity to myriad mental health illnesses.25-27 Most of the extant literature regarding stigma exists in the context of mental illness, and there are numerous parallels between relevant findings in mental illness research and those of other stigmatized identities. This is partic-

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Stigma and Health Literacy: An Agenda for Advancing Research and Practice ularly true for identities that, along with mental illness, can be concealed from others. The notion of concealability is especially relevant to the current discussion given lower health literate individuals can attempt to conceal potential limitations from others. Health-related stigma is commonly examined in terms of either the deleterious effects on a stigmatized individual or the motivations associated with those who stigmatize others. The effects of concealing potentially stigmatizing information about oneself can manifest in negative psychological and physical outcomes.28,29 For example, several studies indicate men who conceal their homosexual identity experience poorer mental health outcomes.30-32 Further, homosexual identity concealment among HIV-seropositive men has been related to more rapid progression of HIV33 and lower CD4 counts.32 Based on such findings, Greene et al34 speculate similar outcomes may be associated with concealing one’s HIV status as well, suggesting stress associated with consciously inhibiting “thoughts and feelings about HIV because of HIV nondisclosure may accelerate AIDS progression.”34, p.169 More broadly, individuals with a concealable stigma face stressors those with visible stigmas may not, such as: deciding whether or not to disclose their status and to whom, anxiety over the possibility of being discovered, isolation from others with similar stigmatized conditions, and feeling detached from their true self.29 Further, among individuals with mental illness, perceived stigma also has been associated with the discontinuation of treatment, potentially exacerbating all associated health concerns.35 Stigmatized individuals are also subject to both individual and structural discrimination. Individual discrimination occurs when someone is denied a job or housing based on their stigmatized condition, whereas structural discrimination is more covert in nature.36 For example, an individual diagnosed with schizophrenia may receive subpar treatment because their stigmatized condition receives less funding, which leads to a limited number of advancements in treatment and fewer accomplished medical professionals.36 Link and Phelan28 argue that the public health implications of stigma are underestimated because the majority of research is conducted on individual conditions and specific outcomes rather than the impact of stigma processes collectively. For example, stigma processes are likely to have a significant influence on factors related to quality of life such as employment opportunities, adequate medical coverage, and housing28 – suggesting discrimination can occur at various systemic, organizational, and interpersonal levels. In terms of the origins of stigmatized beliefs, Weiner’s37 attribution theory provides a widely utilized framework for understanding the cognitive processes associated with stigmatized attitudes and behaviors. The theory posits that one’s perception of the cause and controllability of an

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illness contributes to the assessment of the stigmatized individual’s personal responsibility over their condition.37 When perceived responsibility is low, feelings of compassion or pity are greater and helping behaviors more common; however, if perceived responsibility is high, people are more likely to blame, feel anger, and engage in social distancing.37 Additionally, perceived threat intensifies stigma. Threats may be tangible, such as a threat to personal safety due to unpredictable and erratic behavior, or symbolic, such as a threat to one’s perception of always being in control of their thoughts and behavior.38 Stigma of mental illness and HIV status are influenced by both tangible and symbolic threats.38 Framework Integrating Normative Influences on Stigma The goal of the current discussion is to set an agenda for future research on how stigma relates to health literacy by using the Framework Integrating Normative Influence on Stigma (FINIS) as a template.39 Whereas the intent of this paper is not to mirror the framework, FINIS provides a useful “broad-based scientific foundation”39, p.431 upon which to build a strategic research agenda for health literacy stigma. FINIS demonstrates the cross-disciplinary nature of mental health stigma research and provides a general framework that approaches stigma as an issue affecting individuals at multiple levels.39 FINIS seeks to aggregate the wide variety of potential sources of stigma by incorporating micro-, meso-, and macro-level processes in one comprehensive model (Figure 1). Ultimately, FINIS serves as a starting point for future scholars and practitioners to develop more tailored frameworks that apply to their particular health concern of interest. Therefore, the contributing factors to mental health stigma outlined in the original model were designed as broad conceptualizations that can be defined more specifically from project to project. Pescosolido et al39 provide full details on the development of the FINIS model. Health Literacy and Stigma: A Research Agenda FINIS was developed to synthesize a vast body of research on the stigma associated with mental health issues. The state of research on stigma associated with health literacy does not provide a sufficient foundation for proposing a similar framework. Rather, FINIS can be seen as an example of what is possible, and a road map for future research on health literacy and stigma that could inform the development of a framework conceptualizing the influences on stigma associated with health literacy. Such a research agenda must incorporate influences at the micro-, meso-, and macro-levels to recognize and integrate fully all factors contributing to stigma associated with health literacy. It also must recognize that although low health lit-

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Figure 1 Framework Integrating Normative Influence on Stigma (FINIS) in Pescosolido et al (2008)

eracy is not inherently discrediting, the fact that there is “substantial evidence that stigmas are locally and culturally constructed”38 compels us to consider the social and societal messages that contribute to discreditation. Micro-level Factors and Research The left side of the FINIS model outlines primary social and illness factors that comprise the set of characteristics of the individual and their condition.39 The ways in which these components are combined influence others’ perceptions and stigmatization of an individual and/or their condition. Social and illness characteristics include the extent of one’s devalued status, the social distance between the stigmatized and others, and the perceived gravity of the condition. This micro-level portion of the framework also touches upon 2 dispa-

rate streams of social psychology research regarding whether those who hold stigmatized views of others do so intentionally, through conscious motivations and emotions,40,41 or unconsciously, due to underlying motivations and inherent attitudes.42 Regardless of the underlying processes, this portion of FINIS recognizes stigmatized individuals may be attuned to others’ anxious attitudes and behaviors resulting in feelings of self-stigma, amplified perceptions of discrimination, and potentially manifesting in performance deficiencies that serve to reinforce stigmatized beliefs. One of the most pressing areas where research is needed related to health literacy and stigma is at the interpersonal level where healthcare providers and low health literate patients interact. Video interviews with low health literate patients reveal what scholars would deem felt stigma.43 Health-

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Stigma and Health Literacy: An Agenda for Advancing Research and Practice care providers may unknowingly interact with patients – verbally and nonverbally – in ways that lead lower health literate patients to feel discriminated against. This is particularly true if healthcare providers overestimate their knowledge of health literacy and how to communicate effectively with lower health literate populations.44 Additional research on healthcare provider-patient interactions is a crucial step to understanding the micro-level factors contributing to stigma associated with low health literacy. It also would provide useful information for improving training programs designed to educate healthcare providers on improved interpersonal communication. Even while calling for an increased focus on healthcare provider-patient interactions and how they might contribute to stigma, it is crucial to emphasize the range of professions that provide healthcare services. Micro-level research focused on these interpersonal interactions must look at providers such as physicians, nurses, pharmacists, social workers, physical therapists, and psychiatrists. This is crucial, as more general interpersonal communication research has focused on physicians at the expense of other specialties such as pharmacists.45 Given recognized power differentials and social distance among healthcare providers,46 it is likely that different kinds of healthcare providers will have different interactions with patients, and thus, different influences on stigma associated with low health literacy. As it relates to mental health stigma: “the greater the extent that the ‘target’ person holds devalued statuses, the greater the likelihood that the ‘receiving’ person will mark the problem as serious, label it as a mental illness, and endorse stigmatizing responses.”39, p.433 There is a likely parallel to health literacy, particularly as greater social differentiation between the target and receiver align with risk factors for low health literacy, such as race/ethnicity differences and age.2,47 Investigation focused specifically on how lower health literate populations feel that they are targets of stigma and endorse stigmatizing responses will increase understanding of how stigma is felt and how people respond to it. In the original FINIS framework, disease characteristics are listed as: concealability, contagion risk, course of disease, control of disease, culpability, and comprehension.39 Some of these factors translate to health literacy directly. Low health literate patients can attempt to conceal the issue (eg, by saying they forgot their glasses at home), and the degree to which patients are able to – and desire to – conceal their low health literacy is related to stigma. Whereas more educated members of the general public might blame lower health literate individuals for struggling with health information,12 the degree to which low health literate individuals feel culpable for their own struggles is likely associated with stigma. The “course” of low health literacy may change over time if low-

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er health literate patients gain domain-specific knowledge and efficacy about a health condition or more broadly build literacy skills through education. What was termed “disease characteristics” in FINIS provides a rich area for future investigation, translating those concepts to health literacy and exploring other elements or dimensions of health literacy – such as scientific or civic literacy17 – constructs likely to be related to how individuals are stigmatized and respond to stigma. Meso-level Factors and Research FINIS conceptualizes “meso” as intermediary processes occurring among groups or organizations rather than between individuals (ie, “micro”) or those that exist on a larger societal-level scale (ie, “macro”). The framework identifies these potential sources of stigma as occurring via social networks and/or through the treatment system. The influence of personal experience with individuals who have a mental illness has been hypothesized to decrease one’s propensity to assign stigma to persons identified as having a mental illness; however, empirical research has produced mixed results.48-50 Thus, FINIS incorporates both one’s personal exposure to people with mental illness as well their media exposure to characterizations of mental illness in the concept of social networks. On the other hand, the treatment system component of the framework recognizes that stigma can be found in more structured institutions (eg, the healthcare system), rather than less formal social networks. In particular, stigma can be derived from messages about what is “normal” and what is “ill” and their associated labels in any type of organization. At the meso-level, the design of the healthcare system and decisions in individual organizations all can contribute to or alleviate the association between health literacy and stigma. The process of informed consent – which might be decided at organization, healthcare district, or even state levels – is one example of a system where health literacy plays a crucial role and stigma might contribute to poorer outcomes. A powerful example is a woman who signed consent forms without realizing they were for a hysterectomy, not realizing what the procedure was until after it was complete.43 Scholars have investigated the relationship between individuals’ health literacy and how they make sense of informed consent documents,51,52 but without a focus on stigma that might be associated with the informed consent process and how it might impact patient behavior. The Agency for Healthcare Research and Quality53 developed a toolkit for organizations as “a way to assess their services for health literacy considerations, raise awareness of the entire staff, and work on specific areas.” Such a toolkit is an important step toward increasing system- and organization-level strategies for interacting more effectively with lower health literate patients. But, there are

Mackert et al populations that might be disadvantaged for other reasons and merit specific attention. One example could be people living with visual impairments, who face substantial additional challenges filling out medical forms, receiving health information in a format they can use, and integrating new information into the management of their health.54,55 Given that health literacy is an underlying factor in the delivery of healthcare services across illnesses and populations, and contributes to patients’ decision to seek healthcare services, a better understanding of how these meso-level influences may contribute to stigma associated with health literacy is particularly crucial. As healthcare organizations strive to operate in a manner more accommodating of low health literate audiences, it is critical to increase focus on issues related to cultural competence and language. The Zarcadoolas et al17 model of health literacy incorporates cultural literacy as a major component of health literacy. Ethnic minorities and those who speak English as a second language are recognized as being at greater risk for low health literacy.2 Meso-level research focused on healthcare organizations should consider the degree to which organizations adapt to the cultural and linguistic needs of patients, and how patients of cultural and ethnic minorities might feel increased stigma as a result of low health literacy stemming from issues related to language and culture. The other main meso-level factor described in the FINIS model is social networks. Although there is a possibility that personal contact with people with mental illness might reduce stigma associated with mental health issues, research on this provides mixed results.39 The same basic logic follows for health literacy, that once people interact with individuals with low health literacy they are less likely to stigmatize lower health literate individuals. This may be even truer for low health literacy, given its prevalence and the association between increased age and lower health literacy – it is likely many people have close contact with an older relative who struggles with health information. The proliferation of online social networks – such as Facebook, Twitter, and Vine – also can increase the likelihood of interacting with lower health literate individuals, especially given the popularity of using social networks for health information.56 Deeper understanding of how social networks, and personal contact with lower health literate individuals, impact any stigma associated with health literacy is another important area for future research. Macro-level Factors and Research The final set of factors in FINIS addresses how sources of stigma manifest at a societal level, suggesting mass media along with unique cultural and historical components provide a larger context of influence experienced by all individuals in a society.39 The model posits that media play a role in

shaping individuals’ perception of their world, noting individual perceptions vary as they are “both a mental and social construction.” Further, the media communicate social and cultural norms and those who are exposed to more media more often are likely to have views reflective of the reality they see presented. In terms of mental illness, these depictions are often negative and reinforce prejudice. Whereas the media might shape perceptions of health literacy, the effect is likely to be more subtle due to the general lack of awareness among the public of health literacy; in an active online conversation where participants were implicitly discussing issues related to health literacy in the context of acetaminophen and patient safety, not once did the term “health literacy” appear.12 Still, the media do depict issues related to health literacy. As an example, a character in the television show House M.D. mistakenly using grape jelly as a contraceptive jelly was told by the star that “from an evolutionary standpoint” she should never have sex again.57 This equates IQ and health literacy in the same way participants in online conversation have done.12 Health promotion campaigns such as “Questions are the Answer” encourage patients to ask questions of healthcare providers;58 this kind of health promotion campaign implicitly normalizes low health literacy and feeling uncertain when interacting with healthcare providers, which could have a similarly subtle effect in a positive direction. Additionally, FINIS recognizes normative beliefs regarding mental illness vary based on unique cultural and historical components of a nation.39 This may be conceptualized in terms of how economic development influences tolerance and trust in others, how the welfare state includes or excludes certain conditions making them more or less acceptable respectively, or in terms of the power distance and composition of more or less valued groups within a society. The national context for health literacy has changed dramatically in recent years. Health literacy has become a major issue, with increasing health literacy skills a component of Healthy People 2020.59 Increased academic research, scholarly conferences dedicated to health literacy, and national funding focused on health literacy all have raised awareness among healthcare providers and researchers about the issue. Investigation is needed regarding how a shifting national context impacts the stigma associated with health literacy, as it is unclear how increased attention for health literacy translates to micro- and meso-level influences. Finally, the original FINIS model highlighted potential differences in how stigma is associated with mental illness in developed and developing countries.39,60 In a similar manner, the market-oriented structure of the US healthcare system , compared to other industrialized nations utilizing single-payer systems, also may contribute to stigma associated with low health literacy; the patient-centered

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Stigma and Health Literacy: An Agenda for Advancing Research and Practice and consumer ethos of the US healthcare system could make lower health literate patients more likely to feel a greater responsibility for their own care, and greater stigma when they cannot navigate the system. This is a macro-level research question that could be pursued best through international studies comparing the experiences of low health literate patients in countries utilizing different healthcare delivery systems. Conclusion Health literacy is a driving factor behind health outcomes and disparities, and it is a widespread and costly problem. Research has indicated there is stigma associated with low health literacy,10-12,43 and this may contribute to some of the poorer health outcomes experienced by low health literate individuals. Research focused specifically on the stigma associated with health literacy has been lacking, however. The purpose of this paper is to propose a research agenda that could provide the foundation for a framework on influences of stigma associated with health literacy, similar to the way FINIS organized a broad body of literature on stigma associated with mental health.39 Research on the stigma associated with health literacy lags behind investigations of stigma associated with other health issues. Given the public health impact of stigma may be underestimated due to the way research has tended to focus on stigma associated with individual conditions,36 incorporating stigma more broadly into research on health literacy could have broader benefits. A better understanding of the stigma associated with health literacy is a worthy goal on its own, but it will also increase knowledge of a factor that underlies a variety of other health issues and contributes to poorer health as patients fail to seek care.11 The agenda for research proposed in this paper argues for a multilevel approach to consider micro-, meso-, and macro-level factors influencing stigma associated with low health literacy. At the micro-level we suggest research on healthcare provider-patient interaction, improved training programs to educate healthcare providers on interpersonal communication, and extending such interpersonal communication research to a broad range of healthcare professions. We propose research on how lower health literate populations feel themselves to be the targets of stigma and endorse stigmatizing responses, as well as research that translates the concepts of “disease characteristics” presented in FINIS to health literacy and explores other potential dimensions of health literacy such as scientific or civic literacy. At the meso-level, we recommend examining how health literacy stigma may influence organizational processes such as obtaining informed consent. Also, looking at how services for low health literate patients may be adapted to meet the needs of patients belonging to cultural or ethnic minorities or those who are disadvantaged for other reasons such as blindness or

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disability is needed. Finally, future macro-level research should explore how health promotion campaigns that encourage patients to ask questions of healthcare providers may have a positive influence on cultural norms about health literacy. The recent heightened emphasis on health literacy in the national context may impact health literacy stigma in ways yet to be identified. Additionally, how the patient-centered ethos of the US healthcare system influences health literacy stigma differently than countries that utilize other healthcare delivery systems is a fruitful avenue for research. Advancing such an extensive research agenda will require scholars from a variety of fields – such as interpersonal communication, health education, health communication, medicine, nursing, mass communication, public policy, and public health – collaborating to investigate these varied levels influencing the stigma associated with low health literacy. Whereas one review of research on health literacy and e-health found most work is completed by teams consisting of more than 4 authors, scholars from communication fields were under-represented – only 7% of studies included a scholar affiliated with a communication department.61 This suggests a conscious effort to collaborate beyond traditional research teams and departmental partners may be required. There are also clear implications for healthcare practitioners with respect to stigma and health literacy. Training programs exist to teach healthcare providers about health literacy and more effective ways for communicating with these individuals.44,62 Such programs could be improved through a deeper understanding of the stigma associated with health literacy, how providers might unintentionally contribute to this stigma, and how effective communication could help patients feel more comfortable. This would be a crucial step to eliminating the issue of lower health literate patients hiding their problems or even not seeking care due to shame.10,11 FINIS is a thorough, powerful synthesis of research on normative influences on stigma related to mental illness. Given the importance of health literacy as a factor driving health outcomes across a range of conditions, a model of influences on stigma associated with health literacy would be a crucial tool for improving healthcare research and practice. Although some research has pointed to a link between low health literacy and stigma, there is a need for continued research to lay the foundation for a model conceptualizing and understanding all factors that contribute to that stigma. This paper serves as a call to action to stimulate research on health literacy and stigma, the necessary first step toward developing such a model. References

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