essay on health literacy

Special Issue: COVID-19

This essay was published as part of a Special Issue on Misinformation and COVID-19, guest-edited by Dr. Meghan McGinty (Director of Emergency Management, NYC Health + Hospitals) and Nat Gyenes (Director, Meedan Digital Health Lab).

Promoting health literacy during the COVID-19 pandemic: A call to action for healthcare professionals

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The extraordinary spread of misinformation during the COVID-19 pandemic is impressive. And, to public health professionals like us, it’s worrying: We know that good information and good health go hand in hand. Knowing what we do about the practice of public health and what the science tells us about how people fall for misinformation, we see promising strategies for intervention in our own field. We therefore call on fellow healthcare professionals to take concerted action against misinformation, and we suggest here one lever our field is perfectly situated to address: health literacy. In this commentary, we propose concrete strategies for colleagues at four levels of practice: in healthcare organizations, community-based partnerships, cross-sector collaborations, and as individual healthcare providers.

Bloomberg School of Public Health, Johns Hopkins University, USA

Introduction

Health literacy  is crucial for  health,   and healthcare professionals must acknowledge and   prioritize its importance in every interaction with patients and communities (Berkman et al., 2011; Paasche-Orlow & Wolf, 2007). But we can’t stop there. Given its impact on health itself, health literacy merits a privileged position in our entire scope of operations, from program planning to evaluation to patient safety to communications. A strong body of evidence testifies to the benefits of integrating individual healthcare practice with public health strategy, and the current pandemic is the perfect moment for professionals from these two sectors to join forces in a shared battle against misinformation (Linde-Feucht & Couluris, 2012; Committee on Integrating Primary and Public Health, Board on Population Health and Public Health Practice & Institute of Medicine, 2012). In the midst of what the WHO has called a “misinfodemic,” the stakes of health literacy – or illiteracy – are high, and we consider it our duty, as healthcare professionals, to do everything we can to help people access and act on the sort of health-related information that effectively promotes the achievement of good health. A strengthened commitment to health literacy throughout the entire family of healthcare professionals, within and across organizations and down to each individual provider, offers us great promise for addressing this urgent problem. Here we show why and how.

Before officially declaring COVID-19 a pandemic, the World Health Organization described the massive  info demic surrounding it, pointing to a global overabundance of information that had already made it difficult for the public to distinguish trustworthy health sources from phony experts and created widespread confusion about real evidence-based safety measures (Zarocostas, 2020). Indeed, a recent Pew survey of American adults found that close to half (48%) of the respondents reported seeing at least some made-up news about COVID-19 (Mitchell & Oliphant, 2020).

Research suggests that several key factors drive individual and collective belief in health-related misinformation (Scheufele & Krause, 2019; Uscinski et al., 2016). One of the most important is low health literacy – and the extraordinarily scope and scale of the current COVID-19 “misinfodemic” represents an acute challenge to healthcare professionals in just this regard (Gyenes & Marrelli, 2019; Mian & Khan, 2020). History has shown us the tragic consequences that the spread of misinformation can carry during health crises. (For example, the South African government’s outright denial of the efficacy of antiretroviral therapies and its mass promotion of herbal remedies to combat HIV/AIDS under President Thabo led to the loss of over 300,000 lives as a result of excess HIV transmission, particularly among pregnant mothers)(Nlooto & Naidoo, 2016; Bateman, 2007). The Affordable Care Act (2010) defines health literacy as “the degree to which an individual has the capacity to obtain, communicate, process, and understand health information and services to make appropriate health decisions.” In short, it is the sort of competence that enables people to recognize the severity of a given situation, acquire a basic grasp of how to protect themselves and others, and understand the scope of their choices. In the context of COVID-19, it is what makes people able to differentiate between proposals to take social distancing measures and ones to drink bleach.

While limited health literacy affects people of all ages, incomes, and education levels, some are more vulnerable than others. According to the Centers for Disease Control and Prevention (CDC), racial and ethnic minorities, non-native speakers of English, those with low socioeconomic status, and medically underserved people (e.g., the uninsured and Medicaid-insured) are disproportionately susceptible. Hispanic adults have the lowest average health literacy scores of all racial and ethnic groups, followed by African Americans and American Indian/Alaska Natives; one study found that 74% of Spanish-speaking patients, for example, demonstrated ”below basic” health literacy (the lowest level possible), while only 7% of English-speaking patients did. And disadvantages such as these  matter  because there are serious consequences: People with low health literacy are twice as likely as others to report poor health status (Cutilli & Bennett, 2009).

Recent scientific work has affirmed that misinformation (generally) and limited health literacy (specifically) are major obstacles to health, and have helped to explain and respond to the problem (The National Academies of Sciences, Engineering, and Medicine, 2016; The National Academies of Sciences, Engineering, and Medicine, 2017). In 2017, the National Academies of Sciences (NAS) convened a Committee on the Science of Science Communication to highlight the challenges inherent in effectively conveying scientific information to the public. Additional thought leaders in the field have built on the committee’s work by recognizing misinformation as a product of individual information processing as well as of macro-level causes that include the pervasiveness of social networks and the tenure of highly varied information ecologies (Scheufele & Krause, 2019). Previous studies have noted a lack of understanding of science, the inability to recognize misinformation, the holding of beliefs inconsistent with the best available science, and credence in conspiracy theories as a few of the individual factors associated with the acceptance of inaccurate information (Uscinski et al., 2016; Garrett & Weeks, 2017; Southwell & Thorson, 2015). Other research has suggested that emotional states can influence individuals’ ideologies and alter their propensity to assimilate falsehoods from the information environment (Kalichman et al., 2012; Flynn, Nyhan & Reifler, 2017). 

Group -level dynamics have also been found to   influence individuals’ uptake of misinformation.   For example, insular social networks can shape people’s attitudes and beliefs, allowing for the normalization of falsehoods and making it difficult to counter unfounded beliefs with correct information (DiFonzo et al., 2013). There are also major  systems -level factors that contribute to the spread of misinformation in the United States, including: (1) declining social capital; (2) growing economic inequalities; (3) increasing political polarization; (4) declining trust in science; (5) politically asymmetric credulity; (6) an evolving media landscape; and (7) a fractioning of the media that rewards political extremism (The National Academies of Sciences, Engineering, and Medicine, 2017).

Understanding how these individual-, group-, and systems-level factors condition health literacy gives us clues about how misinfodemics are born and spread. But they also suggest measures that might be levered to develop intervention strategies and solutions to this slippery problem. We have identified a few such strategies, and we issue to healthcare professionals of all sorts a call to action. In the following recommendations, we propose health literacy promotion approaches that can be taken by four key professional stakeholder groups: healthcare organizations; community-based partnerships; cross-sector collaborations; and individual providers. 

Healthcare organizations should strengthen their commitment to health literacy across the scope of operations

Healthcare systems are staffed by a clinical workforce that can leverage its therapeutic relationships with patients to promote and track progress in health literacy. Organizational leadership should avail of these relationships to prioritize the promotion of health literacy in all its outward-facing interactions, integrating health literacy content into planning, evaluation, communication, and patient safety strategies (Brach, 2017). It should identify appropriate “teachable moments” for addressing misinformation – such as care transitions, the prescription of medicines, and vaccination appointments – and plan appropriate health literacy interventions for each one. 

Community health centers are sites of great potential for the promotion of health literacy. For over 50 years, health centers funded by the U.S. Health Resources and Services Administration (HRSA) have functioned as the nation’s primary care backbone for the medically underserved, coordinating care for over 29 million people across the U.S. And since part of these health centers’ statutory mission is to provide comprehensive healthcare to the medically underserved regardless of their insurance status or ability to pay, their patients include 1 of every 3 people living in poverty, 1 in 5 rural residents, 1 in 5 uninsured persons, 1 in 6 Medicaid beneficiaries, 1.4 million homeless people, and 385,000 veterans. Its more than 12,000 service delivery locations reach every state and territory, and 45% are in rural areas (National Association of Community Health Centers, 2019). If the healthcare organizations that manage these health centers recognize their potential, they could become key sites for promoting health literacy among the most vulnerable members of society – and for combatting the misinfodemics that thrive in just those contexts of exclusion where health literacy does not.

Healthcare professionals should build and enhance partnerships with the communities they serve

Healthcare organizations and providers already interact with the populations they serve, but strengthening relationships with diverse community organizations, congregations, and non-medical service agencies will strengthen their position in communities and open new opportunities for information exchange. For example, community-targeted forums can be organized in locally important venues such as churches, recreation centers, and community centers and designed to deliver and discuss relevant health information with the public. Similarly, local organizations can be recruited to serve as direct sources of timely, accurate information, leveraging their existing relationships and rapport with individuals and communities. These entities have an insider’s perspective and can offer valuable insights regarding the best ways to disseminate information and help to reach even the hardest-to-reach members of their communities.

Establishing strong partnerships with local organizations is especially important since the oral cultures of many communities make personal interactions crucial for information dissemination. At the same time, there is a strong scientific evidence base supporting participatory program design processes and demonstrating the benefits of involving members of target audiences in the design and testing of communication products (Cyril et al., 2015).

Healthcare professionals should reinforce their cross-sector collaborations with public health systems

In 2010, The Affordable Care Act expanded health insurance coverage for millions of Americans. But it also highlighted the need for healthcare and public health systems to work together to address individual health within the context of the larger community, incentivizing practices such as accountable care organizations and patient-centered medical homes that adopt integrative strategies (42 U.S.C. § 18001). Two years later, recognizing similar benefits, the Institute of Medicine’s (IOM) Committee on Integrating Primary Care and Public Health outlined a set of recommendations for aligning primary care with public health strategy. Its review examined over 400 collaborations between medical and public health actions and identified benefits for both primary care providers (such as the provision of population-based information that effectively enhanced their capacity to address behavioral and other underlying causes of illness) and public health entities (which received support from primary care providers in the execution of population-based strategies such as the collection of individual-level data for surveillance purposes and the dissemination of health education and health promotion messages) (Committee on Integrating Primary and Public Health, Board on Population Health and Public Health Practice & Institute of Medicine, 2012;   Lassker, 1997).

Similarly, just last year, the American Academy of Family Physicians (AAFP) issued a position paper insisting on the importance and value of primary care and public health integration and urging its members to pursue and support integrative collaborations and interventions (American Academy of Family Physicians, 2015).

The current crisis is a prime opportunity for healthcare and public health professionals to build on their growing legacy of collaboration to partner once more, joining forces now to combat the misinfodemic that threatens the health and well-being of individuals and populations alike.

Individual healthcare providers should make every effort to understand and respond to their patients’ unique health-related knowledge, belief, and literacy conditions

A 2018 Gallup poll found that four in five Americans (84%) rated the honesty and ethical standards of nurses as “very high” or “high,” making them the most well-regarded professionals among those considered; doctors ranked second at 67% (Brenan, 2018). Another Gallup poll, conducted this March in the midst of the COVID-19 pandemic, produced similar findings, showing hospitals and health agencies to be the most trustworthy of the nine major national institutions and leaders proposed (Newport, 2020). Despite this privileged social regard, however, many front-line providers remain unaware of their patients’ beliefs – because they never ask. The notion of a  personal explanatory   model of illness  refers to a patient’s representation of disease and is based on beliefs, emotions,   knowledge, and experiences that are grounded in culture (Kleinman, 1980).

These representations of disease are associated with illness-related beliefs (such as how strongly they believe in self-control over health) and behaviors (such as how long patients stay in treatment) (Lau et al., 1989; Leventhal et al., 1980). While these personal explanatory models can differ radically from scientific models concerning the causation of disease, what people  actually do in the face of illness is often a logical extension of their personal beliefs rather than of the scientific standard (Good, 1992). Individual doctors must recognize, then, that understanding a patient’s beliefs is the starting point for engaging in a discussion of how the patient encounters her world and what matters most to her – and that can become an important, personal, and  personalized  opportunity to correct misinformation, to improve health literacy, and – ultimately – to improve health.

Reiterating our call to action: A multi-level healthcare response to the misinfodemic

Countering the COVID-19 misinfodemic is a critical task for individual and public health. Healthcare professionals in all sectors and at all levels must strengthen their commitment to health literacy. Here we have issued four recommendations describing how healthcare organizations, community-based partnerships, cross-sector collaborations, and individual healthcare providers can play roles in the fight against misinformation by strengthening their efforts to build health literacy among the people and populations they serve.

And play a role they must: This battle is scored in lives and deaths. 

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Cite this Essay

Damian, A. J., & Gallo, J. J. (2020). Promoting health literacy during the COVID-19 pandemic: A call to action for healthcare professionals. Harvard Kennedy School (HKS) Misinformation Review . https://doi.org/10.37016/mr-2020-027

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Article Contents

Introduction.

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Improving health literacy in community populations: a review of progress

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Don Nutbeam, Bronwyn McGill, Pav Premkumar, Improving health literacy in community populations: a review of progress, Health Promotion International , Volume 33, Issue 5, October 2018, Pages 901–911, https://doi.org/10.1093/heapro/dax015

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Governments around the world have adopted national policies and programs to improve health literacy. This paper examines progress in the development of evidence to support these policies from interventions to improve health literacy among community populations. Our review found only a limited number of studies (n=7) that met the criteria for inclusion, with many more influenced by the concept of health literacy but not using it in the design and evaluation. Those included were diverse in setting, population and intended outcomes. All included educational strategies to develop functional health literacy, and a majority designed to improve interactive or critical health literacy skills. Several papers were excluded because they described a protocol for an intervention, but not results, indicating that our review may be early in a cycle of activity in community intervention research. The review methodology may not have captured all relevant studies, but it provides a clear message that the academic interest and attractive rhetoric surrounding health literacy needs to be tested more systematically through intervention experimentation in a wide range of populations using valid and reliable measurement tools. The distinctive influence of the concept of health literacy on the purpose and methodologies of health education and communication is not reflected in many reported interventions at present. Evidence to support the implementation of national policies and programs, and the intervention tools required by community practitioners are not emerging as quickly as needed. This should be addressed as a matter of priority by research funding agencies.

Defining and measuring health literacy

The past 25 years have seen extraordinary growth in interest in health literacy. A search on the term ‘health literacy’ in most publication databases shows negligible publications in the 1990s, rising steeply to many hundreds of papers published annually on the subject in the past few years. This surge in interest has been driven along by debate about the concept, definition and measurement of health literacy, and numerous studies that have investigated the relationship between health literacy and a wide range of health and social outcomes. A small but growing number of studies report on interventions to address the practical challenges of low health literacy in clinical settings, and describe approaches to improving health literacy in different clinical and community populations.

Health literacy is one of many domains of literacy—reflecting the fact that general literacy is both content and context specific. Literacy is generally understood as having two distinct components—those that are task-based, and those that are skills-based. It can be measured in absolute terms by distinguishing between those who can perform the tasks of reading and writing basic text and those who cannot, and in relative terms by assessing the skill differences between those who are able to perform relatively challenging literacy tasks and those who are not able to do so ( National Assessment of Adult Literacy, 2003 ). Individuals with higher levels of general literacy (high-level skills in reading, writing and understanding text) are more able to apply their skills in situations requiring specific content knowledge, or in new and unfamiliar contexts.

Health literacy can be described as the possession of literacy skills (reading and writing) and the ability to perform knowledge-based literacy tasks (acquiring, understanding and using health information) that are required to make health-related decisions in a variety of different environments (home, community, health clinic). Health literacy is also generally understood to include equivalent skills in numeracy. It has been defined and conceptualized in multiple ways ( Peerson and Saunders, 2009 ; Sorensen et al. , 2012 ). but almost all definitions of health literacy in common use have the same core elements describing the skills that enable individuals to obtain, understand and use information to make decisions and take actions that will have an impact on their health status. These are an observable set of skills that will vary from individual to individual.

These differences in skills have been categorized as functional , interactive and critical health literacy ( Nutbeam, 2000 ). Such a classification is derived from mainstream literacy studies and has the advantage of signalling the impact that differences in skill levels may have on health-related decisions and actions. Functional health literacy describes basic level skills that are sufficient for individuals to obtain relevant health information (for example on health risks, and on how to use the health system), and to be able to apply that knowledge to a range of prescribed activities. Interactive health literacy describes more advanced literacy skills that enable individuals to extract health information and derive meaning from different forms of communication, to apply new information to changing circumstances, and engage in interactions with others to extend the information available and make decisions. Critical health literacy describes the most advanced literacy skills which can be applied to critically analyse information from a wide range of sources, and information relating to a greater range of health determinants, and to use this information to exert greater control over life events and situations that impact on health. This differentiation between functional, interactive and critical health literacy have been used and refined by other authors ( Ishikawa et al. , 2008 ; Chinn, 2011 , Sykes et al. , 2013 ).

Such a categorisation also helps to distinguish between interventions that are task-based—designed to develop specific skills to manage prescribed activities (medication adherence, behaviour change), and interventions that are skills based—designed to develop generic, transferable skills that equip people to make a range of more autonomous decisions relating to their health, and to adapt to changing circumstances. The concepts of interactive and critical health literacy connect closely to modern concepts of health promotion. In this case, health literacy has been viewed as a personal and population asset offering a route to greater autonomy and control over health decision-making ( Nutbeam, 2008 ; Pleasant and Kuruvilla, 2008 ; Mårtensson and Hensing, 2012 ). It is through this focus on skills development and empowerment that the concept of health literacy has the potential to have a distinctive influence on the purpose and methodologies of health education and communication.

Developing a ‘universal’ measure of health literacy that can be applied to diverse populations is proving to be very challenging ( Jordan et al. , 2011 ; Haun et al. , 2014 ). Measurement tools need to be able to assess relative differences in health literacy skills, and the ability of individuals to apply those skills to achieve health outcomes in different circumstances. Several simple measures of functional health literacy have been tested, refined and validated over the past 20 years to provide short screening tools for clinicians to use in everyday practice with a broad range of populations ( Davis et al. , 1993 ; Parker et al. , 1995a ; Weiss et al. , 2005 ). These measures were designed and are most useful as screening tools in clinical practice, but are generally insufficient to measure relative differences in cognitive skills in population studies. Progress has also been made in measuring interactive and critical health literacy in clinical populations ( Ishikawa et al. , 2008 ). Currently work is underway in several countries to develop and adapt existing measurement tools for health literacy that can be applied to population studies, can discriminate between relative differences in health literacy, and importantly, can be used to assess change in individuals and populations following intervention. More sophisticated (and complex) tools are emerging but are not yet observably in use in intervention studies ( Chinn and Mccarthy, 2013 ; Jordan et al. , 2013 ; Osborne et al. , 2013 ; Sorensen et al. , 2013 ).

Improving health literacy in populations

In response to surveys that have indicated high rates of poor health literacy in populations, governments and national agencies in countries as diverse as the US, China, Australia and some European nations have developed national strategies and targets to improve health literacy in their populations ( Heijmans et al. , 2015 ; Us Department of Health and Human Services, 2010 ; Australian Commission on Safety and Quality in Health Care, 2014 ; Chinese Ministry of Health, 2008 ). As these policies and other government responses have emerged there has been increasing attention given to interventions to address the challenges posed by low health literacy in populations, and to improve health literacy in populations.

Health literacy can be improved through the provision of information, effective communication and structured education. It can be regarded as a measurable outcome to health education or patient education. Improvements in health literacy can be assessed through the measurement of changes to the knowledge and skills that enable well-informed and more autonomous health decision-making. Differences in communication methods, media and content will result in different learning outcomes and associated behavioural and health outcomes. In turn, individual responses to information and education will be moderated by the environment in which they occur.

To date, the great majority of reported interventions have been in clinical settings, and generally focus on task-directed, functional health literacy. As the number of reported intervention studies has increased there have been some helpful reviews ( Sheridan et al. , 2011 ; Manafo and Wong, 2012 ; Taggart et al. , 2012 ). Taken as a whole, these reviews provide broadly consistent evidence that comprehension of health information and advice among individuals with low health literacy can be improved through modifications to communication and other mixed-strategy interventions. These improvements are associated with better health outcomes including changes to identifiable risks for chronic disease, and among those with established disease, reduced reported disease severity, unplanned emergency department visits and hospitalizations.

These reviews also highlight some of the practical challenges experienced in the clinical environment that will often limit communication to the transmission of factual information on how to use medications and health care services, and the knowledge and skills necessary for successful self-management of a chronic disease such as diabetes and arthritis. These constraints often mean that the educational methods used do not enable interactive communication, nor support the learning that will enable a high level of autonomy in decision-making. Although the Manafo and Wong review (2012) specifically examined interventions that they judged to be directed at improving interactive health literacy, the reviews include few interventions outside of clinical settings, and very few that could be classified as skills-directed, designed to develop interactive and critical health literacy skills.

These reviews also include many interventions based on the well-established knowledge/attitudes/behaviour (KAB) conceptual framework, and studies that used proxy measures of health literacy, usually knowledge improvement. The Taggart et al. review (2012) includes many such interventions. There is nothing intrinsically wrong with this framework, and in the application of more sophisticated psycho-social theories of behaviour change that have been developed in response to the shortcomings of the traditional KAB model (some of which are employed in the interventions). However, such interventions do not always reflect the skills-directed methods and learning theories that are required to develop interactive and critical health literacy, and the use of proxy measures that are limited to knowledge improvement may present a risk that ‘health literacy’ is being used as a convenient, contemporary label to describe more traditional task-directed health education interventions.

Taken overall, these reviews reveal significant ‘work in progress’ in relation to health literacy, providing consistent evidence that individuals with lower health literacy can be identified in clinical settings, supported to make positive improvements in their understanding of specific clinical conditions and related risks, and helped to develop functional skills to modify the behaviours that produce improved health outcomes.

This paper builds on this earlier work by examining the progress to date in the development of interventions to improve health literacy with community (non-clinical) populations, searching in particular for interventions that are skills-directed and where improved interactive or critical health literacy is targeted as an outcome.

Literature search strategy

Electronic databases were searched for key words using search terms: ‘health literacy’ AND intervention AND (measure OR evaluation). Databases searched were Medline via Ovid, PsychInfo, SCOPUS, CINAHL and Web of Science. PubMed was searched by title using search terms: ‘health literacy’ AND intervention only, in an attempt to reduce the number of possible papers. Only studies accessible from the databases above in the English language were considered.

Study screening

Health literacy was identified as a significant outcome of interest

Intervention was designed to improve health literacy

Intervention was directed to an identified community population (non-clinical—no existing condition)

Evaluation included a well-defined measure of health literacy

Interventions directed at individuals and groups with established disease, and/or designed to improve specific clinical outcomes (compliance with medication, self-management of disease) were not included. Interventions targeted at health practitioners or practitioners in training were also excluded. We separately identified several papers that described interventions to improve mental health literacy. These were excluded and are discussed further below.

Study selection

The results of study selection are summarized in Figure 1 . It shows that from an initial pool of 1117 papers the majority were excluded because they did not report on interventions, or were interventions directed at a population with an established condition. Of the 57 papers subsequently considered for inclusion, 50 were excluded for the reasons indicated in the Figure 1 .

Flow chart describing included and excluded articles.

Reasons for exclusion

The review process confirmed that the use of the term ‘health literacy’ is common in searchable abstracts and key words. Even with the use of limiting search terms, the majority of the initial 1117 studies identified were descriptive studies of health literacy, many reporting on the relationship between that concept (variably defined and measured) and a range of social, demographic and health outcome variables.

Excluding papers describing an intervention involved some judgment and we may not have got this right every time. Many were straightforward, excluded on the basis that they described the results of a clinical intervention in a population with established disease. Others were more difficult to judge and worth acknowledging. For example, several of the excluded papers used health literacy to define or segment a population, but not as the target or outcome of the intervention. For example, Faruqi et al. (2015) aimed to enhance preventive care for patients identified as having low health literacy; Zoellner et al. (2015) investigated whether the health literacy status of employees influenced the outcomes of a worksite weight loss program; and Lanpher et al. (2016) reported on a weight loss intervention where the outcomes were weight and engagement by low or adequate health literacy levels. In addition, Banbury et al. (2014) grouped participants of similar health literacy levels to assess the acceptability of a telehealth literacy intervention; and Porter et al. (2016) determined the health literacy status of participants to compare self-monitoring skills between groups.

A number of papers described interventions to improve health literacy, but did not measure change in health literacy as an outcome of the study and were therefore also excluded. White et al. (2013) assessed the quality of educational materials aimed at obesity prevention among preschoolers; and Zoellner et al. (2016) reported the ‘effects of a behavioural and health literacy intervention to reduce consumption of sugar-sweetened beverages’. In this study health literacy was used as a variable to examine retention rates, engagement and behavioural outcomes.

During the course of the review we also identified several interventions to improve ‘mental health literacy’ ( Li et al. , 2013 ; Pinto-Foltz et al. , 2011 ; Reavley et al. , 2014 ; Skre et al. , 2013 ; Taylor-Rodgers and Batterham, 2014 ). These studies have been significantly influenced by the work of Jorm ( Jorm et al. , 1997 ; Jorm, 2015 ) who has argued that mental health literacy needs to be considered as a discrete sub-discipline of health literacy. Most focused on addressing stigma or improving knowledge and understanding of mental health and illness ( Pinto-Foltz et al. , 2011 ; Skre et al. , 2013 ; Taylor-Rodgers and Batterham, 2014 ). We excluded these studies from the review because of significant inconsistencies in the definition of mental health literacy, and wide variation in the measurement instruments used. We have taken a view that this field of study is sufficiently distinctive to warrant separate examination.

Finally, a number of papers were excluded because they described a protocol for an intervention, but did not provide results, ( Batterham et al. , 2014 ; McCaffery et al. , 2016 ; Parker et al. , 2012 ; Rogers et al. , 2014 ; Steckelberg et al. , 2009 ). These are important because they indicate that there may be a pipeline of future interventions to be reported, and that our review may be early in a cycle of interest in community intervention research.

Included studies

Summary of health literacy interventions

Only three of the reported studies ( Chervin et al. , 2012 ; Jay et al. , 2009 ; Soto Mas et al. , 2015 ) used previously established measures of health literacy (such as TOFHLA and S-TOFHLA) ( Parker et al. , 1995b ; Baker et al. , 1999 ); the others used customized measures of a set of variable skills that enable people to obtain, process and use information for health decisions and actions—judged to be broadly compatible with the more widely used formal definitions described above ( Sorensen et al. , 2012 ). One study ( Jay et al. , 2009 ) used the S-TOFHLA to determine health literacy status and then went on to measure change in health literacy using a study-specific customized measure. All included studies relied on self-reported measures of health literacy.

The examples we found covered a range of settings, including online programs, adult education, school and a supermarket-based multimedia program. All included education or communication strategies designed to develop functional health literacy skills directed towards specific improvements in knowledge and understanding, and most were also directed towards pre-defined behavioural responses. Five had elements that were compatible with the development of interactive and/or critical health literacy skills ( Austvoll-Dahlgren et al. , 2012 ; Chervin et al. , 2012 ; Carroll et al. , 2015 ; Fleary et al. , 2013 ; Xie, 2011 ). Educational methods varied considerably from formal classes ( Fleary et al. , 2013 ; Soto Mas et al. 2015 ), home visiting ( Carroll et al. , 2015 ) and study circles ( Chervin et al. , 2012 ), through multi-media ( Jay et al. , 2009 ) and eHealth/online interventions ( Austvoll-Dahlgren et al. , 2012 ; Xie, 2011 ).

The interventions focused on the needs of specific population groups throughout the life-course (parents, adult learners, older people), and addressed a range of topical health issues including food choices, physical activity and parenting. Most were also targeted at populations and in settings that have a higher proportion of individuals with lower health literacy.

The study designs were variable with the majority including some form of comparison or control group. Most described positive results from the intervention in terms of knowledge and skills gain compatible with the health literacy concept. Significant changes in health literacy were reported when comparing scores before and after the intervention ( Carroll et al. , 2015 ; Soto Mas et al. , 2015 ; Xie, 2011 ; Chervin et al. , 2012 ; Fleary et al. , 2013 ). One study ( Jay et al. , 2009 ) indicated differential results between adequate and limited health literacy participants.

Our review found only a limited number of studies that met the deliberately restrictive criteria, with many more that were evidently influenced by the concept of health literacy but had not demonstrably used the concept in the design and measurement of outcomes. Those included were diverse in setting, population and intended outcomes. The small numbers make it difficult to provide commentary that could be used as a general guide to future interventions, but some tentative observations can be made.

In terms of definition and measurement , all studies were designed to develop functional health literacy skills, and five of seven incorporated elements that were compatible with the development of interactive and/or critical health literacy skills. The measures of health literacy were conceptually narrow in some cases. For example, Carroll et al. (2015) and Austvoll-Dahlgren et al. (2012) used screening instruments not originally designed for population intervention studies. In most cases the studies used instruments that were customized to the specific intervention and outcome objectives of the study, for example those used by Fleary et al. (2013) and Jay et al. (2009) . These limitations on the measurement instruments are not surprising given the timing of the research reported. The more comprehensive measures of health literacy referred to above were not known or accessible for most of these studies, and we should anticipate that new studies will benefit from these and other more sophisticated measures ( Chinn and Mccarthy, 2013 ; Jordan et al. , 2013 ; Osborne et al. , 2013 ; Sorensen et al. , 2013 ).

In terms of education and communication methods , almost all of the examples used interactive communication methods to develop health literacy skills. Some were task directed, for example Jay et al. (2009) was focused on developing health literacy skills to improve competencies in comprehending food labels. Others such as Soto Mas et al. (2015) and Xie (2011) were more focused on the development of generic health literacy skills. In Carroll et al. (2015) , the communication was also personalized to the needs of individual participants.

Taken as a whole, it was disappointing to find so few studies that were actively using the concept of health literacy in their design and evaluation. The results suggest that the concept and rhetoric relating to health literacy has excited the interest of public health researchers, practitioners and policy makers, but that this interest has not yet been converted into substantive advances in public health interventions. Relatively few reported interventions directed at healthy (non-clinical) populations have incorporated the concepts of interactive and critical health literacy. The widespread use of the term in titles and key words indicates continuing scientific interest in the concept, but a risk that the term has become a fashionable way of relabeling established intervention methods and outcomes.

It is not difficult to understand why health literacy has become a subject of wide interest in the past decade. For researchers interested in health and disease causality, health literacy offers a convenient and logical summary definition of a pre-existing condition/risk that can be used to understand and explain variation in health and disease outcomes. There is a substantial and growing literature that confirms the importance of the concept in clinical practice and public health. For those interested in the evaluation of information, education and communication (IEC) interventions, health literacy has long been proposed as a useful outcome measure ( Nutbeam 1998 ).

For clinicians, work over many years, mainly in the USA, has established health literacy as an identifiable and manageable risk in clinical care, of particular importance in the management of long-term and complex conditions that depend upon successful patient engagement and management. For public health practitioners, health literacy is conceptually attractive in its fit with contemporary health promotion, understood as a personal ‘asset’ that can be developed through educational and other interventions to support greater personal and community control over a range of determinants of health.

For policy-makers, health literacy has the attraction of being a sufficiently malleable concept to be used to support a full spectrum of policy positions—at best to reflect a desire for greater patient and public engagement in health decision-making, and at worst, to shift the burden of protecting and improving health away from the state to the individual.

All of this attention is undoubtedly supporting advances in our knowledge and understanding of the concept, its relative importance as a health determinant, its measurement, and its potential for use to guide clinical practice, public health and public policy. However, this review provides a stark reminder that the academic interest and attractive rhetoric surrounding health literacy needs to be tested more often and more systematically through intervention experimentation in a wide range of populations using valid and reliable measurement tools.

We recognize that our review methodology may not have captured all the studies using health literacy to guide intervention development and assess outcomes in community populations. However, the paucity of intervention studies that clearly reflect the ‘skills-directed’ methods at the heart of the health literacy concept, and the continuing challenge of measurement should give cause for concern. The distinctive influence of the concept on the purpose and methodologies of health education and communication is not reflected in many reported interventions at present. That said, there is an encouraging pipeline of intervention studies that have reported protocols but not yet on results. Overall, evidence to support the implementation of national policies and programs, and the intervention tools required by community practitioners are not emerging as quickly as needed. This should be addressed as a matter of priority by research funding agencies.

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8 Ways to Improve Health Literacy

Why it matters.

Inadequate health literacy can lead to poor self-care, worsened outcomes, and decreased likelihood of receiving preventive care and services. For Health Literacy Month , IHI Executive Director Frank Federico describes what care providers should do to improve their communication with patients to help improve the safety and reliability of care .

The Institute of Medicine defines health literacy as “the degree to which individuals can obtain, process, and understand the basic information and services they need to make appropriate health decisions.” Studies show that health literacy is a strong predictor of health status. Inadequate health literacy can lead to numerous negative effects on an individual’s health and well-being, including poor self-care, increased utilization of health services, worse outcomes, and decreased likelihood of receiving preventive care and services. Poor communication with patients also contributes to unnecessary readmissions and reduced patient satisfaction and engagement.

Health information can be confusing even for those with advanced literacy skills. It’s easy for those of us working in health care to forget that we speak our own language that patients can’t always easily understand. Most of us can recall times when we believed that we shared information with a patient and family member or caregiver and assumed they understood our instructions, only to later discover confusion or misunderstanding.

I teach a session on health literacy at a local college of pharmacy, and share examples from my own time in practice as well as many examples found in the literature. One example I share with my students is a study in which researchers asked patients what they knew about diuretics (more commonly known as fluid pills). Fifty-two percent of the respondents believed that fluid pills caused fluid retention instead of alleviating it. Another example I use is the story of a patient who was informed that she had Grave’s disease, and burst into tears because she thought the doctor was telling her she was about to die.

This kind of confusion is understandable, but may also be avoidable if we take some extra care with our communication with patients and family caregivers. There are a number of ways care providers can improve their communication to help patients and families better understand health information. Here are some suggestions:

• Ask open-ended questions to assess the patient’s understanding of written materials, including prescription labels.
• Use the Teach Back communication method to determine if a patient has understood your instructions and can repeat the information in their own words.
• Use what I call “Show Back” when teaching a patient to use a device or perform a particular task, to demonstrate correct use.
• Hand your patient written material upside down while discussing it, and observe whether they turn it right side up.
• Say “swallow” instead of “take”
• Say “harmful” instead of “adverse”
• Say “fats” instead of “lipids”
• Say “belly” instead of “abdomen”
• Say “lasting a short time, but often causing a serious problem” instead of “acute”
• Speak more slowly when providing instructions. Be respectful and clear without being patronizing.
• Use graphics and pictures instead of long written instructions.
• Provide information at an appropriate grade level.

As we continue to work on improving the safety and reliability of care, we must expand our efforts beyond the standardization and simplification we focus on in the acute care and ambulatory settings. We must consider the other defects that contribute to patient harm, including how we communicate with patients about their treatment plans and their health. Ensuring that we are communicating clearly and delivering information at the appropriate literacy level will be an important step.

You may also be interested in:

• IHI Patient Safety Congress , a conference for those who shape smarter, safer care for patients wherever it’s provided
• Certified Professional in Patient Safety (CPPS) , a credential earned by demonstrating a high level of proficiency in the core standards of patient safety

Related Insights

• Research article
• Open access
• Published: 26 April 2017

Health literacy in childhood and youth: a systematic review of definitions and models

• Janine Bröder   ORCID: orcid.org/0000-0002-0399-7649 1 ,
• Orkan Okan 1 ,
• Ullrich Bauer 1 ,
• Dirk Bruland 1 ,
• Sandra Schlupp 1 ,
• Torsten M. Bollweg 1 ,
• Luis Saboga-Nunes 2 ,
• Emma Bond 3 ,
• Kristine Sørensen 4 ,
• Eva-Maria Bitzer 5 ,
• Susanne Jordan 6 ,
• Olga Domanska 6 ,
• Christiane Firnges 6 ,
• Graça S. Carvalho 7 ,
• Uwe H. Bittlingmayer 5 ,
• Diane Levin-Zamir 8 ,
• Jürgen Pelikan 9 ,
• Diana Sahrai 10 ,
• Albert Lenz 11 ,
• Patricia Wahl 11 ,
• Malcolm Thomas 12 ,
• Fabian Kessl 13 &
• Paulo Pinheiro 1  

BMC Public Health volume  17 , Article number:  361 ( 2017 ) Cite this article

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An Erratum to this article was published on 09 May 2017

Children and young people constitute a core target group for health literacy research and practice: during childhood and youth, fundamental cognitive, physical and emotional development processes take place and health-related behaviours and skills develop. However, there is limited knowledge and academic consensus regarding the abilities and knowledge a child or young person should possess for making sound health decisions. The research presented in this review addresses this gap by providing an overview and synthesis of current understandings of health literacy in childhood and youth. Furthermore, the authors aim to understand to what extent available models capture the unique needs and characteristics of children and young people.

Six databases were systematically searched with relevant search terms in English and German. Of the n  = 1492 publications identified, N  = 1021 entered the abstract screening and N  = 340 full-texts were screened for eligibility. A total of 30 articles, which defined or conceptualized generic health literacy for a target population of 18 years or younger, were selected for a four-step inductive content analysis.

The systematic review of the literature identified 12 definitions and 21 models that have been specifically developed for children and young people. In the literature, health literacy in children and young people is described as comprising variable sets of key dimensions, each appearing as a cluster of related abilities, skills, commitments, and knowledge that enable a person to approach health information competently and effectively and to derive at health-promoting decisions and actions.

Identified definitions and models are very heterogeneous, depicting health literacy as multidimensional, complex construct. Moreover, health literacy is conceptualized as an action competence, with a strong focus on personal attributes, while also recognising its interrelatedness with social and contextual determinants. Life phase specificities are mainly considered from a cognitive and developmental perspective, leaving children’s and young people’s specific needs, vulnerabilities, and social structures poorly incorporated within most models. While a critical number of definitions and models were identified for youth or secondary school students, similar findings are lacking for children under the age of ten or within a primary school context.

Peer Review reports

From a public health perspective, children and young people constitute a core target group for health literacy research and intervention as during childhood and youth, fundamental cognitive, physical and emotional development processes take place [ 1 ] and health-related behaviours and skills develop. As a result, these stages of life are regarded as crucial for healthy development, as well as for personal health and well-being throughout adulthood [ 2 , 3 ]. Moreover, health literacy is understood as a variable construct that is acquired in a life-long learning process, starting in early childhood [ 4 ]. Hence, targeting children and young people with health literacy interventions can help promoting healthy behaviors and ameliorate future health risks.

Whilst we acknowledge the recent increase in publications which focus on children and young people, the attention contributed to children’s and young people’s health literacy is still small compared to the momentum health literacy is currently experiencing in research, practice and policy-making. Within health care settings, research has mainly focused on the impact of parental or maternal health literacy on children’s health. Accordingly, most research primarily addresses questions of how children are affected when their parents lack the knowledge and skills required for making sound health decisions concerning their children’s health [ 5 ]. Within health promotion, some attention has been drawn to addressing children’s and young people’s health literacy in school health education and health promotion [ 6 – 9 ].

Moreover, there is limited knowledge and academic consensus regarding the abilities and knowledge a child or young person should possess for making sound health decisions. For the general population, the European Health Literacy Consortium integrated both drivers and differing dimensions to suggest: health literacy is “linked to literacy and entails people’s knowledge, motivation and competences to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course.” [ 10 ]. Moreover, an individual’s health literacy depends upon their personal situation including their health status, risks or problems, their affiliation with social group(s) (e.g. health practitioners, patients, and different age-groups) and other socio-economic determinants [ 11 ]. A more specific overview for child and youth health literacy is lacking. Hence, it is unclear, to what extent conceptual and theoretical efforts for shaping and describing health literacy in children and young people currently do consider the unique characteristics of the target group and recognise related challenges. Rothman et al. [ 12 ] proposed four categories of unique needs and characteristics to contrast the target group from the general adult population, namely (1) developmental changes, (2) dependency on resources and skills, (3) epidemiological differences, and (4) vulnerability to social-demographic determinants of health.

To address these described research gaps, this article aims:

to scope current understandings of health literacy in childhood and youth and

to understand to what extent available models capture the unique needs and characteristics of children and young people.

For this purpose, a systematic review and inductive content analysis of health literacy definitions and models for persons aged 18 or younger was conducted in English and German academic literature. To the authors’ knowledge, this work is the first to scope the conceptual understanding of health literacy in children and young people in a systematic manner. The research is conducted in the context of the German Health Literacy in Childhood and Adolescence (HLCA) Consortium [ 13 ] and seeks to provide a first step towards future effective health literacy interventions to promote children’s and young people’s health.

A systematic review of available generic health literacy definitions and models for children and young people aged 18 or younger was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for ensuring high quality and transparent reporting of reviews [ 14 ]. Within this research, health literacy is regarded as a multidimensional construct for which the available latest research is being synthesized and evaluated. Hence, it consists of multiple underlying dimensions that entail the generalizable characteristics of health literacy. Health literacy dimensions were extracted from available conceptual models. These were clustered according to their stated purpose as conceptualisation – the process by which imprecise constructs and their constituent dimensions are defined in concrete terms – or operationalisations, which provide the base for measuring the construct or testing it with defined variables [ 15 ].

Search strategy and screening process

Between May - Nov. 2015, six bibliographic databases were searched, including PubMed, the Educational Resources Information Centre (ERIC), the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Web of Science, in English and the FIS Bildung Literaturdatenbank in German. Search terms in English and German were defined for three distinctive search clusters - main topic, subtopic, and target population (see Table 1 ) - and were selected upon a narrative search. Search terms were combined through Boolean operators (AND/OR) and truncations and wildcard characters were used to increase the sensitivity of the searches. The searches were not limited to any publication time frame, research design or peer-review criteria (dissertations and essays were included). Theory-building or conceptual, explorative publication are often part of an inductive research process, providing the theoretical base for hypothesis-testing research. Therefore, not all quality standards as outlined in the PRISMA guidelines applied to our research question.

The search identified n  = 1492 publications (see PRISMA Chart in Fig. 1 ). After removing duplicates ( n  = 471), 1020 abstracts were screened by JB and OO. Database searches were complemented by hand searches, e.g. in Google Scholar, and a cross-check of the reference lists of studies included for analysis, retrieving 13 additional articles that entered the selection process.

PRISMA chart of systematic search process

Articles were eligible if they: a) were fully available in English or German; b) focused on generic health literacy – while excluding any domain or topic-specific health literacy models, to ensure a focus on the core dimensions of health literacy [ 16 ]; c) offered relevant content for defining and conceptualizing health literacy in children and young people and d) addressed a target population that were 18 years or younger. Articles incorporating a life course perspective on health literacy were included as well. The life course concept refers to the sequence of age categories that people normally pass through as they develop and progress from birth to death. Thus, even without specifically stating the target group, the life course concept specifically encompasses children and young people as well. Therefore, the articles were included as they added to the comprehensiveness and the entirety of the analysis.

Whether articles were included for full-text analysis was determined by JB and SS based on the articles’ assessed fit with the eligibility criteria. Publications, for which the researchers reached a differential decision, were discussed within the core research team and if necessary assessed again until consensus was reached.

Data extraction and analysis

The 30 articles were selected for the full-text analysis for the following reasons: four contained only a definition [ 1 , 17 – 19 ], thirteen only a model [ 5 , 20 – 31 ] and eight described a definition and a model [ 4 , 8 , 10 , 32 – 36 ]. For three models two original references [ 37 – 39 ] were included as both provided additional insights to the model. All these articles were qualitatively assessed and synthesized applying a four-step inductive content analysis. Firstly, eligible publications were scanned for definitions and conceptual models that were either developed for the target group or adapted to it, or included relevant perspectives on health literacy for children and young people. Secondly, these definitions and models were coded and extracted by the research team following an inductive approach. Overlapping definitions and models from the same research group, were only included once. For non-related publications that described the same health literacy definitions or models, only the original reference was included and marked accordingly in Table 3 . Thirdly, relevant background variables were defined and extracted into a matrix. These background variables included the age of the target group, the reasons for focussing on the target group, whether the target groups’ perspectives were considered (a) in the development of the definition or model, or (b) in the applicability and relevance of these, and the setting(s) for which they were developed. The articles’ research design and methodological quality was not assessed as many studies were theoretical explorations for which the assessment criteria of PRISMA did not apply. Finally, the definitions and identified dimensions were discussed with a whole research team in autumn 2015 and the feedback was integrated into the final analysis.

The systematic review of the literature identified 12 definitions (Table 2 ) and 21 models (Table 4 ) of health literacy for children and young people.

Definitions of health literacy in childhood and youth

Of the 12 definitions (Table 2 ), two specifically targeted children younger than 12 [ 17 , 32 ], another one included children from 3 to 18 years [ 1 ]. Four definitions focused on young people at different ages between 13 and 18 years [ 8 , 18 , 19 , 33 ], while five articles considered health literacy over the life course without specifying a target group [ 10 , 20 , 34 – 36 ]. Four definitions were developed from a school health education perspective [ 8 , 18 , 19 , 32 ]. While Massey [ 33 ] specifically targeted health literacy in the health care setting, Mancuso [ 34 ] and Sørensen et al. [ 10 ] stressed the relevance of health literacy in multiple health-related settings including health care, disease prevention, health promotion, and public health. The definitions by Fok and Wong [ 17 ] and Massey et al. [ 33 ] were the only ones where the target group participated in the development of empirical and explorative dimensions. Gordon et al. [ 19 ] developed the definition as a result of a stakeholder consultation with school health community partners and Sørensen et al. [ 10 ] evolved from the results of their systematic literature review.

The inductive narrative synthesis [ 40 ] of the definitions revealed seven content categories: (1) components, namely skills, abilities, competences, etc., (2) actions or agency, (3) subjects, (4) sources of information, (5) purpose, (6) conditions, (7) time perspective (see Table 3 ).

Although diversely defined, health literacy was commonly portrayed as an individual-based construct, with a multidimensional nature [ 20 ]. As such, it exceeds basic reading, writing or numerical abilities [ 1 ]. In addition, health literacy entails a combination of different health-related skills, competences, and knowledge, as well as a motivational component that an individual possesses [ 10 ].

All definitions share a dominant demand or action-related focus mostly directed towards the access, process and application of health information [ 10 ]. These actions entail immediate cognitive or behavioural tasks that health literate persons should be able to perform when encountering situations that demand health-related decision-making in daily life or within the health care context. As such, children and young people are viewed as actors that actively and deliberately participate in seeking, processing, and evaluating health information (as well as health services, knowledge, attitudes and practices). The acquired information can be adequately used in health-informed decision-making, which form a direct output dimension for observing or measuring children’s or young people’s health literacy [ 8 ]. Fok and Wong [ 17 ] focus not only on health information-related tasks but on actions related to physical and psycho-social activities children engage in. They point out that children are health literate once they understand how to achieve health and well-being by obtaining certain attributes as personal hygiene, emotional stability, enjoyment in school life, and the ability to cope with various circumstances [ 17 ].

All definitions state an outcome dimension of health literacy - an intermediate or distant goal or purpose of health literacy. Outcomes of health literacy include rather specific tasks linked to health-related decision-making, e.g. to manage one’s health environment [ 33 ] or to make informed or appropriate health choices [ 18 ]. The intermediate or long term outcomes of health literacy refer, rather generally, to the promotion of personal health [ 35 ] and health outcomes, e.g. the reduction of health risks and the improvement of ones quality of life [ 20 ] or living conditions [ 18 ]. Borzekowski [ 1 ] perceives children and young people as vulnerable and “marginalized” groups that can be empowered to be more engaged, more productive, and healthier. Paakkari and Paakkari [ 8 ] emphasise the societal dimension of health literacy, indicating that health literacy enables students “to work on and change the factors that constitute their own and others’ health chances”. Gordon et al. [ 19 ] take an even more general view, stating that health literacy is building individual and community capacity to understand the components of health. The categories “requirement” and “time perspective” are the ones that specifically relate to the target group of children and young people: The first includes preconditions for being (able to be) health literate, namely, a reasonable degree of autonomy [ 17 ] or supporting external conditions, as the ways health-related materials are presented in an age appropriate manner, are culturally relevant and socially supported [ 1 ]. Lastly, health literacy is viewed as being an evolving construct or ongoing process [ 19 ], which needs to be acquired and developed during the life course [ 10 , 20 , 34 ].

Models of health literacy in children and young people

A total of 21 articles included models of health literacy (Table 4 ). These 16 articles conceptualized health literacy at a theoretical/abstract level. The other five operationalized health literacy dimensions for the development of measurement tools [ 18 , 32 ] or as an effect or evaluation model for an intervention programme [ 22 , 25 , 26 , 41 ]. Three models represented a clinical-medical perspective [ 21 , 23 , 33 ], but the majority of them ( n  = 18) took on a public health perspective. These studies developed health literacy from a multi-system perspective (i.e. the health system, education system, community system), covering several health-related domains, as health care, disease prevention and health promotion. Nine models were developed from a school health education perspective [ 8 , 18 , 22 , 25 – 27 , 29 , 30 , 32 ]. Three articles [ 25 , 26 , 32 ] included children younger than 12 years, while nine addressed young people or secondary school children aged 12 years or older. One article, Sanders et al. [ 5 ] covered four distinctive developmental phases. Eight studies did not exclusively focus on children and young people but considered health literacy over the life course.

How are target group specificities considered?

Twelve of the identified articles elaborated on children and young people’s distinctiveness towards adults and how these specificities are relevant for understanding health literacy in these age groups. However, most of these considerations remained on a very broad level, strongly incorporating an “external”, adult view on the target group’s situation and the relevance of health literacy for them. In summary, children and young people:

are expected to understand increasingly complex health information [ 5 ] and large amount of educational materials distributed to them by health providers, schools and intervention programmes [ 21 ];

become increasingly responsible for their own health and for dealing with different kinds of health-related issues [ 22 ];

are increasingly engaged in their health, their health service utilization [ 23 ] and usage of insurance benefits [ 33 ];

develop skills today that influence their health (outcomes) and well-being over their life course [ 24 ] and reduce health expenditures [ 33 ];

are citizens in their own right, within their current surroundings [ 8 ];

are able to construct their own views on health matters [ 8 , 35 ];

are at a crucial stage of development characterized by many physical, emotional and cognitive changes [ 21 ].

Most prominently, articles considered children and young people’s situations and needs by exploring their social embeddedness, namely the interrelated pathways between the individual and their close and distal social contexts. Wharf Higgins et al. [ 27 ] stated that in order to be effective approaches to teaching health literacy “also need to reflect a thorough understanding of the structure of adolescents’ social worlds, and their developmental appropriateness”. While, Wharf Higgins et al. [ 27 ] reflected on health literacy from a socio-ecological understanding, Paek et al. [ 28 ] complemented the social ecological approach with health socialization perspectives, adopted from political and consumer socialization. As pathways of contextual influences are considered to be strong influencing factors of health literacy in the literature, an extensive description of the inductive content analysis is provided in the “antecedents and consequences” section. Moreover, the importance of an age- and development-specific understanding of health literacy for children and young people was especially pointed out in models that were developed within the context of school health education [ 18 , 22 , 25 – 29 , 32 ]. Paakkari and Paakkari [ 8 ] stated that while health literacy learning conditions in school may include aspects of each of their five core health literacy components, students’ age-specific needs and characteristics need to be taken into account. The identified health education models conceptualized health literacy for a small and distinctive age group or specific school grade(s). Commonly, the complexity and comprehensiveness of their health literacy components increased by school grades. From a health promotion perspective, Sanders et al. [ 5 , 31 ], similar to Borzekowsik [ 1 ], explored the development of health literacy competencies from a cognitive development perspective for different age groups. They distinguish between four successive developmental stages, providing examples of health literacy skills in four categories (prose/document and oral literacy, numeracy and system-navigation skills) that were adopted from the US National Health Education Standards (NHES) [ 37 ].

Dimensions of health literacy for children and young people in the 21 models

Health literacy in children and young people is described in the literature as comprising variable sets of key dimensions – clusters of related abilities, skills, commitments, and knowledge that enable a person to approach health information competently and effectively and to derive at health-promoting decisions and actions. This section provides an overview of the inductive content analysis which reveals the important aspects of health literacy in children and young people (Table 5 ). It also offers a meta-perspective of health literacy in children and young people that enables comparison between different aspects. As the retrieved dimensions are diverse and overlapping, classification was challenging. Due to the strong focus on individual attributes, the dimensions were selected to be clustered according to three core categories: (1) cognitive, (2) behavioural or operational and (3) affective and conative.

Cognitive attributes

The mental abilities and actions that enable a person to think, learn and process information are attributed to this category.

Knowledge is regarded as an essential component of health literacy in children and young people. Mancuso [ 34 ] states that a certain level of knowledge is required for comprehending content as well as for managing and analysing information and becoming empowered regarding one’s health and the related decisions. It is either described as (a) a separate core dimension [ 8 , 30 ], as (b) an element of several dimensions [ 4 ], or (c) a foundational or cross-sectional component [ 10 , 26 , 27 , 33 ]. Lenartz et al. [ 38 ] and Soellner et al. [ 36 ] describe health-related basic knowledge as the comprehension of basic terms describing the body or basic health-related coherences and functions. Others distinguish between (a) theoretical or conceptual knowledge (i.e. facts, terms, principles in health-related matters), (b) situation-specific knowledge (i.e. knowledge of specific health situations in health-related domains), and (c) practical or operational knowledge (e.g. the knowledge of what actions are adequate in a given situation) [ 8 , 30 ]. Paakkari and Paakkari [ 8 ] describe conceptual knowledge as procedural knowledge or the skills needed “to behave in a health-promoting way” which is often experimental, situation-specific, and linked to daily practices. Massey [ 33 ] recognises that individuals must be knowledgeable and confident health care consumers. This includes the knowledge of one’s rights regarding sensitive topics, or knowledge of one’s responsibilities related to health care, e.g. health insurance benefits, how and where to find information.

Basic or functional health-related skills

Most articles recognise that health literacy requires being able to read, write, fill out a form or comprehend a text [ 4 , 21 , 38 ]. Nutbeam [ 35 ] labels these skills as functional literacy which is needed in order to understand health-related materials (e.g. medicine labels, prescriptions, or directions for home health care) and to function effectively in everyday situations. Some authors point out the relevance of numeracy skills (e.g. the ability to understand basic mathematical symbols and terms, basic probability and numerical concepts) and active listening skills (aural language) [ 5 , 24 ]. Wolf et al. [ 23 ] take on a cognitive development perspective, defining the mentioned health literacy skills as “higher order mental tasks”. The latter are determined by one’s (a) processing speed, (b) attention, (c) working memory, (d) long-term memory, and (e) reasoning (ibid. p.4). Consensus is lacking whether the described basic skills are considered as core dimensions of health literacy, or being integral in other dimensions, or rather preconditions for health literacy.

Comprehension and understanding

The ability to comprehend, to grasps a meaning of and to understand health information or concepts related to health care, promotion and disease prevention was considered to be a core dimension of health literacy [ 10 , 18 , 28 , 32 ]. Mancuso [ 34 ] refers to it as a complex process based on effective interaction of logic, language, and experience, allowing an individual to become a critical thinker and problem-solver who can identify and creatively address health issues. Subramaniam et al. [ 26 ] identified the following elements of comprehension: (a) an ability to read, comprehend and recall situated information; (b) an ability to perform basic mathematical functions (e.g. numeracy); (c) an ability to comprehend simple charts (e.g. visual literacy), and (d) an ability to filter information found and extract only relevant information.

Appraisal and evaluation

The ability to interpret, filter, judge, and evaluate health information was another core dimension of health literacy [ 8 , 10 , 18 , 21 , 26 , 29 , 30 , 32 , 34 , 35 ]. Moreover, appraising information refers to making sense of information gathered from diverse sources by identifying misconceptions, main and supporting ideas, conflicting information, point of view, and bias [ 26 ]. In the literature several relevant criteria but, as Wu et al. [ 18 ] stated, not necessarily mutually exclusive criteria for evaluating information, were identified: (a) accuracy, validity, and appropriateness (correct information or the message’s credibility); (b) impartiality (unbiased communication); (c) relevance (applicability to the problem); (d) comprehensiveness (broad coverage of the information); and (e) internal consistency (logical relationships exist between information and/or concepts). The credibility of the sources of a message or information, as well as the medium through which it is transported is also important [ 18 , 21 , 26 ]. Manganello [ 21 ] stresses that “media have been shown to influence physical and social development of youth, have been associated with health behaviour and are often cited as a source of health information for adolescents”. Zeyer and Odermatt [ 30 ] consider the evaluation of possible alternatives for action with regards to whether an action is health promoting and feasible in daily life. Hence health literacy entails evaluating the personal consequences of acting in a certain ways and the consideration concerning whether and how an intended action is feasible.

Critical thinking

Critical literacy skills or critical thinking are argued to be core dimension of health literacy [ 8 , 29 , 35 ]. They refer to the ability to think clearly and rationally and approach knowledge from various angles, formulate arguments, and make sound decisions [ 8 ]. As children and young people receive health messages from numerous sources, “they may gain a fragmented picture of health issues unless they are able to critically create links between diverse pieces of information” [ 8 ]. As a result, “critical thinking enables students to deal with large amounts of knowledge and to have power over that knowledge” [ 8 ].

Behavioural or operational attributes

All dimensions referring to actions that take place outside of the individual’s mind were assigned to be behavioural attributes.

Seeking and accessing information

Information seeking is described as another core dimension of health literacy. Subramaniam et al. [ 26 ] view it as a fluid and iterative process, including two main elements, namely information access and search. Accessing information is the ability to seek, find and obtain health information [ 10 ]. According to Subramaniam et al. [ 26 ] it includes being able to adapt to new technologies, being aware of primary health resources to begin search, having to access valid information, products, and services, being exposed to computers in everyday life and being aware of search engines and their capabilities. Massey [ 33 ] distinguishes between materials received from health providers (“passive information”) and information accessed over the Internet or by other means outside of the clinical setting (“active information”). Searching information entails developing appropriate search strategies, using relevant and correctly spelled search terms, applying an adequate search strategy drawing on reputed credibility and an understanding of how search engines work (e.g. hits, order of search results, snippets, inclusion/placement of ads, etc.). Moreover, Subramaniam et al. [ 26 ] included other elements such as being able to limit reliance on surface characteristics, among others the design of a website, the language used, etc. (e.g. surface credibility), to reduce search result selection based solely on word familiarity and to use translation features on the search engine or Web page if needed. As such critical media literacy and critical digital literacy have become important dimensions of health literacy in the information society. Moreover, Paek et al. [ 28 ] distinguish traditional media, such as TV, radio and newspapers, from digital media, e.g. the internet.

Communication and interaction

Communication, according to Mancuso [ 34 ], refers to how thoughts, messages or information are exchanged and includes speech, signals, writing or behaviour. It further involves input, decoding, encoding, output and feedback. Being able to effectively communicate about one’s own health or health information and, if necessary, to cooperate with other people, including friends and health care providers was considered an important aspect of health literacy [ 23 , 25 , 27 , 32 , 36 , 38 ]. According to Nutbeam [ 35 ], more advanced cognitive, literacy and social skills are needed in order to “communicate in ways that invite interaction, participation and critical analysis”, to extract information and derive meaning from different forms of communication, and to apply this to changing circumstances [ 35 ]. Basic communication about health (issues) in health care settings requires providing an overview of personal medical history or participating in informed consent discussions about medical treatment options [ 33 ]. Essential communication skills involve reading with understanding, conveying ideas in writing and speaking so others can understand, listening actively, and observing critically [ 34 ]. Moreover, young people and children need listening (aural language) and oral literacy or verbal/expressive skills in order to effectively communicate [ 5 , 26 ]. While Paakkari and Paakkari [ 8 ] recognise that health literacy involves being able to “clearly communicate one’s ideas and thoughts to others”, they regard general communication and social skills as foundational for health literacy and not as a distinctive dimension of health literacy.

Application of information

This core aspect of health literacy refers to the ability to communicate and use health information for health-related decision-making with the rational that one wants to maintain and improve one’s health and that of the people in one’s surrounding. The use of health information strongly depends upon the context and the goal of the health information seeking process [ 26 ]. It entails being able to synthesize information from multiple sources, draw conclusions, answer questions originally formulated to present information need, or even sharing, collaborating, communicating, creating information and adapting them as needed for intended audience (e.g. self, peers, family). On an outcome or impact level, applying health information refers to addressing or solving health problems, and make health-related decisions. This includes using health information for practicing health-enhancing behaviours or mitigating or avoiding health risks. Massey et al. [ 33 ] focus on young people’s health prevention behaviours, such as participating in annual check-ups or screening interventions as well as their attitudes and perceptions about visiting a doctor. On a population level, applying health information entails advocating for personal, family, and/or community health [ 8 , 26 ]. From a critical scientific perspective, it includes being able to interpret data of scientific articles to articulate potential limitations of published research findings and the cumulative impact of scientific knowledge (i.e. incremental process of discovery), as well as being able to recognise inaccurate information and to practice appropriate ethical standards for information (e.g. copyright, security, privacy) [ 22 , 26 ].

Other context-specific skills for the application of information and accessing services

The ability to navigate through the health care system was defined as a core dimension of health literacy [ 36 ]. It entails knowing how to access health services and being able to make an appointment or filling out a prescription [ 33 ]. Sanders et al. [ 5 ] provide age-adjusted examples for navigation skills which range from knowing proper usage of emergency numbers (e.g. 911) for school aged children to accessing confidential health and counselling services (young people) or completing enrolment processes for a health insurance and obtaining appropriate health services (young adults, 18-20 years).

Citizenship

Citizenship, the ability to act in an ethically-responsible way and take social responsibility, defines a core dimension of health literacy in the work of Paakkari and Paakkari [ 8 ]. It involves considering health matters beyond one’s own perspective, namely through the lens of others and of the collective, as well as moving from individual behaviour changes towards wider changes (i.e. organisational changes). Similarly, Zarcadoolas et al. [ 4 ] consider civic literacy a core dimension of health literacy. It describes the “knowledge about sources of information, and about agendas and how to interpret them, that enables citizens to engage in dialogue and decision-making”. Rask et al. [ 29 ] take on a societal perspective in their holistic health literacy dimension by identifying particular skills: People who possess holistic health literacy are (a) tolerant to various groups of people, (b) antiracist, (c) widely aware of the influence of cultural differences on health, (d) aware of the importance of art and civilization for health, (e) concerned about the environmental threat. Moreover, they (f) understand the significance of social capital for physical, mental, and social health, (g) appreciate and protect environment, (h) criticize the negative aspects of western life because they pose a threat to health, and (i) want to promote health globally.

Affective and conative attributes

This category includes dimensions of health literacy that evolve around the experience of feeling or emotions (affective attribute) or describe personality traits and mental stages that influence how individuals strive towards action and direct their efforts (conative attributes).

Self-awareness and self-reflection

Self-awareness involves the ability to reflect on oneself. It refers to being conscious about one’s thoughts, feelings, attitudes, values, motives and experiences as well as one’s health-related decisions [ 8 ]. “Self-awareness requires being able to link together and describe health topics from one’s own personal perspective, and to examine reasons for one’s ways of behaving and thinking in a particular way”. An adequate perception of one’s needs, wants and sensations is seen as key factor for regulating one’s own behaviour [ 36 , 38 ] and for breaking through daily-routines and considering and analysing a strategy for action [ 30 ]. Paakkari and Paakkari [ 8 ] also stress the ability to reflect oneself as a learner, namely the ability to evaluate their learning strategies, define learning goals, and monitor their progress.

Self-control and self-regulation

According to Lenartz et al. [ 38 ], self-regulation enables individuals to formulate health-related goals in line with as many personal needs, feelings, values, and interests as possible. Self-control refers to an inner focus to reach a certain goal, while possibly struggling with competing personal needs, feelings, wishes and interests. A certain level of self-control and self-regulation is therefore needed to resist the internal and external (social) pressure (e.g. to continue or start smoking again) and to deal with e.g. unpleasant feelings and emerging doubts [ 36 , 38 ].

Self-efficacy

Self-efficacy – a person’s own belief in their own ability to complete certain health-related tasks and reach defined goals was considered a foundational dimensions of health literacy in children and young people [ 23 , 25 , 26 , 35 ].

Interest and motivation

Young people’s interest in health topics and their motivation to act upon what they have learned in staying healthy were described by Paek et al. [ 28 ] as core dimensions of health literacy. Similarly, Sørensen et al. [ 10 ] regard motivation as an essential cross-sectional component, and Soellner et al. [ 36 ] emphasize the willingness to take responsibility for one’s own health.

Antecedents and consequences of health literacy in children and young people

Table 6 displays the factors that the literature review identified as influencing children’s or young people’s health literacy (antecedents) or as being influenced by health literacy (consequences).

Antecedents

Twelve of the identified models included antecedents and distinguished between individual characteristics, demographic, situational or contextual factors as well as broader system or social factors.

Internal characteristics refer to an individual’s beliefs, values, experiences, cognitive and physical abilities, general literacy skills or other abilities, e.g. technological abilities. Paakkari and Paakkari [ 8 ] argue, in line with Manganello [ 21 ], that general skills such as social or communication skills, as well as self-efficacy are antecedents for health literacy and not per se separate core dimension of health literacy. Rather, they are important for different core dimensions and are not attributable to one. However, other authors [ 35 ] regard these as being core dimension of health literacy (see Table 5 ).

Models that focus specifically on children and young people emphasize the family’s demographic factors and parental influences. The younger the child is the more likely he/she is to rely on their parents for economic and social support and, therefore, their own socioeconomic status (SES) or occupation are not applicable to variables [ 24 , 31 ]. Family demographic factors include parental health literacy levels, socio-economic status, as well as their own health status and health behaviour. Martin and Chen [ 24 ] argue that these family factors strongly influence children’s health literacy, health status, and other educational variables such as school readiness and a child’s academic outcomes.

Furthermore, families, peers, and schools are all regarded as major socialization agents in children’s and young people’s lives that influence the opportunities they have for being or becoming health literate. Family and peers can encourage or discourage health literacy actions as well as health promoting lifestyles through their norms, actions, and social support [ 27 ]. Parents can be role models of how to access and interpret health information and teach children to critically evaluate the credibility and validity of information sources and media channels. In this context, the quality and the type of the relationship play a major role, as children or young people are likely to consult peers and adults they trust, which is crucial as trust also plays a role in accessing media and online health resources.

The social and system levels refer to education, health, and community systems as well as political and cultural forces. These include the general learning conditions and environment, e.g. students’ safety on school grounds, teachers that are equipped with the appropriate skills and teaching practices that could promote critical thinking and reflexion through negotiation and discussion [ 8 , 27 ]. Next, the community where a child or young person lives may have an impact on his/her health literacy: Martin and Chen [ 24 ] and Wharf Higgins et al. [ 27 ] draw attention to the influence of the community- socioeconomic level on the health literacy in that community. Political and cultural factors refer to differences in cultural practices, political decision-making, e.g. governmental policies that decide whether to include health literacy in the school health curriculum. Synthesizing it, health literacy is argued to be promoted through health promotion actions in the general population which include an education for health, efforts to mobilize people’s collective energy, resources, skills, towards the improvement of health and advocacy for health, e.g. in form of lobbying activities and political activism [ 35 ].

Consequences

Fifteen articles mention that health literacy in children and young people leads to benefits on the individual, community or societal-level (applied from Nutbeam [ 35 ]). On individual level, health literacy enables young people to be skilled health care consumers and to overcome environmental and interpersonal barriers when interacting with the health care system [ 21 , 33 , 35 ]. Moreover, it is argued that health literacy can empower young people to understand themselves, others and the world, to make sound health decisions, and to discuss health-related social issues [ 8 , 29 ]. Health literate young people are also believed to possess an enhanced ability to establish and maintain their self-defined health-related goals such as to engage in physical activities or not to drive after drinking [ 27 ]. In addition, the benefits of health literacy are argued to extend to the full range of life’s activities – at home, at work, in society and culture and at wider health economic levels [ 4 , 10 ]. Martin and Chen [ 24 ] and Sanders et al. [ 31 ] take on a life course perspective, viewing health literacy as set of competencies that are passed from a parent to the child and do not only affect the child’s health behaviour and outcomes but also the ones of the family.

In terms of societal and communicational benefits, health literacy is argued to increase the participation in population health programmes, to improve community empowerment and the general capacity to influence one’s own health and the health of others, as well as broader social norms [ 8 , 35 ].

The objectives of this study was (a) to scope current understandings of health literacy in childhood and youth and (b) to understand to what extent available models capture the unique needs and characteristics of children and young people. The 12 definitions and 21 models identified enabled a sound depiction of health literacy for children and young people. As a strong commonality of the complex and heterogeneous definitions and models, health literacy is depicted as a multidimensional, complex construct. Moreover, by describing the construct along multiple integrated categories, a synthesis of the health literacy dimensions retrieved from the literature was possible. However, it may be the case that these categories overlap as the same phenomena can be described in various ways and many models regarded health literacy through different lenses, resulting in differential focuses. These observations are in line with Paakkari and Paakkari [ 8 ] who pointed out that “there are differences regarding what is regarded as a component of health literacy and what may follow on from or be associated with health literacy”.

Regarding the first part of the research question, the focus of health literacy exceeds the health care setting in most definitions and models. It was recognised that health literacy in children and young people is relevant in many occasions and contexts of daily life that have a potential impact on the well-being and the promotion of one’s health. Similar to health literacy in adults [ 10 ], health literacy involves actions or agency which vary according to the health literacy perspective that is applied – e.g. from a clinical or health care setting paradigm, to a more comprehensive health system or public health or health promotion paradigm [ 42 , 43 ]. While the first perspective aims to impact on the health outcomes of the individual through healthier decision-making, the latter includes actions for advocating for one’s own health and that of society through citizenship [ 8 ] and addressing broader social determinants of health [ 29 ]. These definitions and models are referred by De Leeuw [ 42 ] as “third generation” health literacy research which recognise that health literacy enables personal empowerment and is interrelated with broader determinants of health. As a result, health literacy is context and content-specific and as such varies according to the complexity of the task at hand and the contextual factors present [ 35 , 43 ]. Hence, an individual is always interwoven with and subjected to the social and cultural context it is embedded. While these “two sides of a coin” – the individual’s attributes and the many contextual factors – were considered in most definitions and models identified, the review revealed a strong emphasis on the individual attributes which were elaborated in detail. The contextual factors were acknowledged but often remained underscored in the literature. In the following paragraphs, we offer our reflection and perspective on the observed discrepancy.

The individual attributes include the knowledge and skills that a person should have in order to meet certain situation-demands, e.g. in the health (care) system, or general health-related demands that society poses upon the individual. These demands mostly are diverse and overlapping within the definitions and models. Mostly, they refer to performing actions related to the gathering, understanding, appraisal and use of health information or services, or as Fok and Wong [ 17 ] point out, general physical and psycho-social activities. However, this individual-based, action-focused perspective “appears to limit the problem of health literacy to the capacity and competence of the individual” [ 44 ]. Moreover, the behavioural components of health literacy (e.g. to apply health information) are often not distinguishable from the outcome categories of health literacy, namely the health choices and behaviours that are health literacy is expected to influence (listed in Table 6 ). Given the strong individual and skill-based focus of health literacy definitions and models that require individuals to take charge of and become actively involved in seeking, understanding, accessing information and make health-related decisions, really reflects children’s and young people’s everyday realities. In other words, do they overestimate the opportunities (Möglichkeitsraum) and scope for action (Handlungsspielraum) of children and young people within health literacy and decision-making processes? According to Schulz and Nakamoto [ 45 ], health literacy and personal empowerment do not automatically derive from one another, as one can have the capacities and skills necessary to promote one’s health but may lack the empowerment to do so. Moreover, the preferred “societal” outcome of most models is “healthier behaviour” – namely such behaviour that is considered “healthy” by health professionals, experts or society. Especially models targeting the health care system still appear to strongly favour an adherence perspective, viewing individuals primarily as receiving health information and complying with the professional (health or care) instructions provided. Such strongly “subject-focused” health literacy perspectives entail – as known from health promotion discussions – the risk of primarily holding the individual responsible and accountable for their own health. This reflects a culture of individualisation in late modernity and “the risk society” [ 46 , 47 ]. This victim blaming approach [ 48 ] ignores the universal recognition that social determinants of health – the economic and social conditions that affect individuals and communities –strongly influence a person’s individual ability to be health literate [ 11 ]. By ignoring the multifaceted and complex nature of human decision-making and behavioural change [ 49 , 50 ] and by clashing with health promotion goals and practice, individual-level health literacy perspectives “may do little to achieve the ultimate goal of promoting equitable health status” [ 51 ]. As a result, exercising health literacy is only possible if opportunities for engaging in health literacy actions as well as for participating in everyday decision-making are present. Hence, the extent to which families, communities and societies allow children and young people to take an active role and participate in health literacy practices remains a question for future research. A possibility for exploring this could be by drawing upon a resource-focused health perspective, for instance the salutogenic paradigm by Antonovsky [ 52 ]. Saboga-Nunes [ 53 ] stressed the connectedness between health literacy and salutogenesis by arguing that childhood and youth could be considered most permeable life stages where salutogenic resources are built up by transforming health information into action and the other way around. In line with Antonovsky [ 52 ], health information could be understood as stimuli from one’s internal and external environment that are met with a dynamic feeling of confidence. This feeling would be retrieved from the ability to comprehend such stimuli, to consider them to be relevant for one’s health, and to access the resources needed for successfully addressing the stimuli and the demands posed by it.

In terms of the interrelatedness of social, cultural, and environmental contextual factors, especially the role of the intermediate environment of children and young people is emphasized: The target group is especially dependent upon their parents or caregivers for the access to material, financial, and social resources (e.g. health care). However, this dependence decreases as they develop and become more mature. While most articles also identify a strong impact of adults’ health literacy on their children, little is known about the nature of this influence and the impact of social agents in the target group’s environment. Sanders et al. [ 31 ] refer to it as “collective health literacy”, which can be regarded as a form of social and cultural capital according to Bourdieu [ 54 ]. Moreover, several articles highlight the role of available and accessible social support structures and peer assistance for the health literacy of children and young people: they benefit from the health literacy related knowledge and skills which they can access through their social informal or formal support structures. This kind of assistance can help children to accomplish health-literate-related tasks or actions that they otherwise would not be able to succeed in on their own [ 1 , 55 ]. Vygotsky [ 56 ] termed this external assistance “scaffolding”. Overall, these social-cultural and economic contextual factors are primarily argued to act as antecedents or mediators for health literacy and tend to be neglected at the core of health literacy itself. We argue that the strong emphasis on health literacy as a set of skills tends to neglect and disregard the situation in which health literacy takes place, as well as the social practices relating to health literacy. In conclusion, there is a gap between the recognition of the role of contextual and cultural factors for health literacy and their implementation within strongly individualistic, skill-based conceptualisations, as well as operationalisations that focus on few distinctive health literacy dimensions [ 25 ]. Therefore, further research is needed that shifts from a functional, skill-based health literacy perspective to alternative approaches of understanding health literacy, e.g. by observing health literacy within the context that it takes place in and through the social practices in which it is performed. Such a comprehensive health literacy construct will be challenging to implement and operationalize. One option for addressing this challenge could be a modular design, which is then adjusted as necessary to specific target groups, contents and contexts.

The second part of the research question was to clarify to what extent available models capture the unique needs and characteristics of children and young people. Here, special attention was contributed to the target groups' recognition and characteristics in the analysis, which revealed the following discussion points:

While many definitions and models were identified for young people, including secondary school students, similar findings are lacking for children under the age of ten or within a primary school context. In addition, the same is true for transitional stages, e.g. from primary to secondary school level or from youth to adulthood. These findings are in line with conclusions drawn by Hagell, Rigby and Perrow [ 57 ]. Especially with regards to young children, the focus is strongly on maternal or caregivers’ health literacy competencies, enabling them to secure the child’s care needs. Children, including primary school level or younger have not yet been at the focus of health literacy conceptual and intervention research efforts. Given that research has linked health literacy to health outcomes, and to health (care) costs for the adult population, research should follow up on past efforts [ 58 ] in order to explore the relevance for young people as well as children.

Life phase specificities are only considered in 12 models, which incorporate a strong focus on children’s age-specific cognitive development. These dominantly consider health literacy to take place in several consecutive age or developmental stages, as Piaget suggested in his theory of cognitive development [ 59 ]. Although life phase specificities are argued to manifest in the target group’s social embeddedness, the articles attribute little attention to sociological approaches to childhood [ 54 , 60 ] as well as to children and young people’s social role and position, as argued by the New Sociology of Childhood [ 61 ]. The latter perspective of childhood stresses that children should not be regarded as ‘becomings’ (incomplete) but as individual “beings” and members of their own social groups. This draws attention to the social role that is contributed to children and young people by their caregivers, communities and society. Generally, the younger children are the more dependent they are on their parents in respect to economic resources and social support as well as their parents’ health literacy. However, little is known about how parental and child health literacy are interwoven and interact in the child’s developmental processes. Brady, Lowe, and Lauritzen [ 62 ] for instance argue that even from a very young age onward, children are already active agents of their own social worlds that take on an active role in their health. Viewing children and young people as active social agents draws attention to considering children’s perspective of health and how they deal with it while being subjected to different social contexts and cultures. Children continuously develop and change through socialization processes and interaction with their environment, including their parents, other adults or their peers [ 61 ]. How we view children and young people, therefore, largely depends on our – adult – perception of childhood and youth and the social role we attribute to children and young people in everyday interactions, e.g. between teachers and students or between doctors and child patients.

The essential role of media and digital communication channels for the target group [ 63 ] was a theme that was found to remain underscored in available health literacy dimensions for children and young people, apart from few exceptions [ 21 , 27 , 28 ]. Media plays an increasing role in children’s personality, cognitive and emotional development. It transports moral and cultural values and facilitates their social and political socialization processes [ 64 ]. In an attempt to bridge the conceptual gap between approaches to health and media literacy, a media health literacy model for adolescents was developed and successfully tested for the target group by Levin-Zamir et al. [ 65 ]. Moreover, critical media health literacy for young people was defined by Wharf Higgins and Begoray [ 66 ] as consisting of a skill set of reflection, discrimination and interpretation abilities, as well as empowerment and engaged citizenship. Given the important role of media in the target group, we propose to recognise the interrelatedness of (critical) media, digital and health literacies more profoundly in future models, interventions, and educational curricula.

Most of the identified dimensions of health literacy in childhood and youth were fairly similar to the ones identified for adults (cf. the review results by Sørensen, et al. [ 10 ]). This poor incorporation of life phase specificities might result from the fact that their voices and perspectives largely remain unheard: Their active participation in the conceptual development process was only realized in three articles. Overlaps to adult health literacy dimensions were observed most strongly in models that focused on a life course perspective of health literacy (and hence implicitly target children and young people as well). Those six models were analysed to be adult-focused as they incorporate neither target group specifics nor age- or development-flexible components. Therefore, their applicability and validity for the target group was found to be questionable. This is especially problematic as they have served [ 67 , 68 ] or may in the future serve as conceptual foundations for health literacy programs or interventions for children and young people. Applying general health literacy models to the target group that were not especially developed to meet the needs and demands of children and young people may actually hinder effective health literacy promotion and development in that target group. Such practices have been observed in some summarizing articles on children’s and young people’s health literacy as well [ 39 , 57 ]. The described scarcity of health literacy understandings that incorporate specific target group characteristics and perspectives reveals a current research gap.

Therefore, it is argued in line with Rubene et al. [ 55 ] that children’s and young people’s health literacy, due to their distinctive needs and life situations, should be “conceptualized as an issue in its own right and not as a derivation of adult health literacy”. Hence, future conceptual and empirical research efforts need to recognise children’s and young people’s special character and encourage the target group to actively participate, providing them with the opportunity to contribute with their own understandings and perspectives of health literacy and to the promotion of healthy behaviour.

Limitations

For pragmatic reasons, this review focused on exploring definitions and models of general health literacy of young people, excluding domain- (e.g. media ), target-group or disease-specific health literacies (e.g. mental or diabetes health literacy). However, concentrating on generic health literacy enables a broader recognition of the overall field of health literacy, hopefully preventing us from ‘not seeing the wood for the trees’ due to specific interest areas [ 16 ]. Macket et al. [ 16 ] point out that a model valid for one context is less helpful for enabling knowledge construction and learning in other contexts through cross-contextual comparison and transfer. While this is an acknowledged problematic, we strongly stress the need to view health literacy as being socially constructed, varying according to the context one is in and the tasks at hand and hence recognising the unique characteristics of the target group.

Extending the review to articles that incorporate a life course perspective on health literacy may have let to bias the analysis towards non-target group-specific definitions and models. However, these were included based on the argumentation that if they claim to provide a life course perspectives on health literacy, they implicitly includes children and young people as well. Therefore, they are of relevance for the comprehensive scoping of current health literacy understandings for the target group. While the review was conducted using sound and systematic methods, following the PRISMA guidelines to the extent possible for qualitative reviews [ 14 ], in order to ensure its validity and accurateness, several limitations certainly are present and need to be considered. Efforts were made to enhance the sensitivity of the search strategy, using a comprehensive list of search terms and applying relevant operators. The databases that were used covered multiple disciplines indexing bibliographic records of a variety of journals and publication types. Nevertheless, we might have missed relevant literature, among others, due to limitations in availability and of individual databases’ search algorithms. Focussing only on English and German language articles led to distortion in favour of native English and German speaking research contexts. To ensure that the focus remains on the key research question, the assessment and evaluation of the selected articles was performed according to a systematic data extraction method, applying a coding protocol. While the core research team was independently involved in the selection and the assessment of the articles to minimize subjectivity and interpretation, the risk of selection, coding or opinion bias still remains. Due to the differing focus of analysed definitions and models, an explicit evaluation of the content was often difficult. Hence, the final assessment depended on the researchers’ interpretation of the written content. Furthermore, no assessment of the articles’ methodological quality took place, as many were theory-building or conceptual, explorative publications that often did not follow an outlined methodological approach. Therefore, not all quality standards as outlined in the PRISMA guidelines were applicable and viable for our research design.

Addressing health literacy in children and young people should be based upon an empirical sound and measurable definitions as well as on conceptual frameworks that are valid, hands-on, and meet the specificities of the target group. This systematic review of the literature identified a broad theoretical base for health literacy in children and young people, while also pointing to conceptual shortfalls, especially related to a coinciding set of knowledge and skills adopted for the target group and how these are developed during the life course. Moreover, further operationalisation and implementation of these dimensions are necessary to test whether the described commonalities of the definitions and models are sound and measurable to describe the construct of health literacy of children and young people. Furthermore, we believe that health literacy could empower children and young people – who are especially vulnerable and to some extent marginalized social groups – to become more engaged with their health and more informed and reflective upon their future health choices. For this, it is crucial to not focus on an individualistic perspective only. Rather, it is of importance to recognize the interrelatedness and contextualisation of health literacy where people are empowered to interact with health, social and educational systems to the benefit for themselves as well as for the society as a whole. In turn organisations and systems are providing health literacy friendly services that can facilitate health for all. In such a two-sided approach, we must pursue to (i) strengthen children’s and young people’s and their care takers’ personal knowledge, motivation and competences to take well-informed health decisions; and (ii) decrease the complexity of society as a whole, and of the health care system in particular to better guide, facilitate and empower citizens, including children and young people to sustainably manage their health. Future efforts must target the redesigning of systems to be inclusive and friendly towards children and young people, the adjustment of curricula and training of health professionals, teachers and other relevant stakeholders in order to better meet the challenge of the health literacy deficit, and the recognition of children and young people as active partners in their health decision-making.

Moreover, given the relevance of social structures and support on the way health literacy skills are acquired, applied and hence practiced in very varying life situations, children’s and young people’s distinctiveness from adults, however, should become a crucial consideration when understanding health literacy. Moreover, we stress that health literacy should not become a liability for children and young people with responsibilities exceeding their influence. Hence, several critical reflections and considerations that challenge current understandings of health literacy were pointed out that could be beneficial when taken into account in future research and interventions. Therefore, future efforts should encompass these gaps and challenges identified, addressing them from a multidisciplinary perspective, viewing the target group as active social agents, who are deeply embedded in their close and distant surrounding (e.g. family, friends, and social institutions). As such, the greatest challenges for conceptualizing health literacy might ensure its generalizability and validity across context, while recognising its context- and content-dependency.

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Acknowledgements

The authors thank all partners in the HLCA consortium for contributing to the discussion of the results and the content of this article, as well as Alexandra Fretian and Sandra Kirchhoff for language editing.

HLCA Consortium members:

• Bielefeld University: Ullrich Bauer, Paulo Pinheiro, Orkan Okan, Janine Bröder, Torsten Michael Bollweg, Dirk Bruland, Michael Rehder, Sandra Schlupp.

• Robert Koch Institute, Berlin: Susanne Jordan, Olga Domanska, Christiane Firnges.

• University Duisburg-Essen: Fabian Kessl, Jürgen Wasem, Maren Jochimsen, Frank Faulbaum, Katrhin Schulze, Janine Biermann, Maike Müller.

• University of Education, Freiburg i.Br.: Eva-Maria Bitzer, Uwe Bittlingmayer, Hanna Schwendemann, Zeynep Islertas, Inga Kloß, Elias Sahrai.

• Katholische Hochschule Nordrhein-Westfalen, Paderborn: Albert Lenz, Patricia Wahl.

• Criminological Research Insititue, Niedersachen e.V.: Paula Bleckmann, Thomas Mößle.

The HLCA consortium and related research are funded by the German Ministry for Education and Research from March 2015 - February 2018, funding number: 01EL1424A.

Availability of data and materials

Tables 2 , 4 and 5 list the studies included in this review. The citavi datafile that was used for the search process and a list of excluded studies/references is available upon request.

Authors’ contributions

JB, OO, UB, and PP conceived and designed the review, developed the search strategy, lead the data analysis as well as the discussion of the results and are major contributors in writing the manuscript. JB, OO, SS, and PP carried out the systematic search and lead the data collection. DB, TMB, LSN, EB, KS, EMB, SJ, OD, CF, GSC, UHB, DLZ, JP, DS, AL, PW, MT, and FK contributed substantially to (a) the concept, the analysis and interpretation of data during the research process on a regular basis and during three intensive consultations rounds at the HLCA consortium’s meetings and (b) the manuscript drafting process by providing critically revisions for important intellectual content, ensuring that the manuscript includes the crucial result and discussion points that arose during the research process. All authors read and approved the final manuscript.

Competing interests

The authors are members and scientific advisors of the German Health Literacy in Childhood and Adolescence (HLCA) consortium and claim to have no competing interests.

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Not applicable as the study does not involve human participants, human data, or human tissue.

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Centre for Prevention and Intervention in Childhood and Adolescence CPI, Bielefeld University, Bielefeld, Germany

Janine Bröder, Orkan Okan, Ullrich Bauer, Dirk Bruland, Sandra Schlupp, Torsten M. Bollweg & Paulo Pinheiro

National School of Public Health, Universidade NOVA de Lisboa, Lisbon, Portugal

Luis Saboga-Nunes

University of Suffolk, Ipswich, UK

Global Health Literacy Academy, Urmond, The Netherlands

Kristine Sørensen

University of Education, Freiburg i.Br, Germany

Eva-Maria Bitzer & Uwe H. Bittlingmayer

Robert Koch Institute, Berlin, Germany

Susanne Jordan, Olga Domanska & Christiane Firnges

CIEC, Institute of Education, University of Minho, Braga, Portugal

Graça S. Carvalho

School of Public Health, University of Haifa, Haifa, Israel

Diane Levin-Zamir

Austrian Public Health Institute, Gesundheit Österreich GmbH, Wien, Austria

Jürgen Pelikan

School of Education, Basel, Switzerland

Diana Sahrai

Katholische Hochschule Nordrhein-Westfalen, Paderborn, Germany

Albert Lenz & Patricia Wahl

School of Education and Lifelong Learning, Aberystwyth University, Aberystwyth, UK

Malcolm Thomas

University Duisburg-Essen, Essen, Germany

Fabian Kessl

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Bröder, J., Okan, O., Bauer, U. et al. Health literacy in childhood and youth: a systematic review of definitions and models. BMC Public Health 17 , 361 (2017). https://doi.org/10.1186/s12889-017-4267-y

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Health Literacy and Health Equity: Connecting the Dots

By Michelle Hutchinson, DMD, MPH, CPH, health communication specialist/health literacy lead, Office of Communication Science, Office of the Associate Director for Communication (OADC), Centers for Disease Control and Prevention (CDC), and Sara R. Bedrosian, public affairs specialist, Health Equity Working Group, Division of Public Affairs, OADC, CDC

October is Health Literacy Month, a time for public health and health care organizations to recommit to making sure all audiences can find, understand, and use our information and services to make the best health-related decisions for themselves and others.

The U.S. Department of Health and Human Services includes health literacy in one of its overarching Healthy People 2030 goals : “Eliminate health disparities, achieve health equity, and attain health literacy to improve the health and well-being of all.” With that goal in mind, CDC chose “Health Literacy and Health Equity: Advancing Diversity, Accessibility, and Inclusion” as its 2021 Health Literacy Month theme.

The Connection Between Health Literacy and Health Equity

Health literacy and health equity are related concepts. Equity sits at the center of the 10 Essential Public Health Services , and effective communication is the 3rd essential service. Effective communication uses health literacy principles to inform and educate the public. Putting health literacy principles into action advances health equity: the attainment of the highest level of health for all people. These principles include testing materials with intended audiences, providing translation services for people with limited English proficiency, using plain language, and designing websites so they’re accessible to people who use assistive technology. When people can access and understand our information, they can act on it, but this may not be enough to spur action.

People are more likely to embrace information that incorporates health equity principles because that information is more likely to meet each audience’s specific cultural, linguistic, environmental, and historical needs and priorities. People are more likely to accept messages that don’t blame them for their adverse circumstances.

Health literacy principles make information clearer. Health equity principles make it more inclusive. Organizations that carefully consider both when designing and developing communication products will more easily realize their communication objectives and achieve success in their public health interventions.

A New Resource

To help CDC’s workforce and partners address all people inclusively, accurately, and with respect, the agency launched Health Equity Guiding Principles for Inclusive Communication in August 2021 on CDC’s Gateway to Health Communication . It outlines inclusive communication principles such as:

• Using a health equity lens
• Using person-first language
• Avoiding unintentional blaming
• Using preferred terms for populations of focus while recognizing that preferred terms may differ
• Looking for ways to be more inclusive in text and images
• Exploring other resources related to health equity communications

Guiding Principles also provides suggestions and rationale for language that may increase message adoption by the intended audience. For example, “communities with limited access to [specific service]” might be more accepted than “hard-to-reach communities” because the latter implies that a condition is inherent to the group, while the former focuses on causal factors. These are not authoritative rules; they are recommendations.

Additionally, Guiding Principles recommends the use of plain language principles along with the use of health equity concepts and the language necessary to accurately and equitably represent all people. For example, the phrase “people who are incarcerated” is wordier but more representative and equitable than the term “inmates.” The former humanizes individuals by referring to them as people first — people who are currently incarcerated — while the latter reduces those same people solely to their imprisonment status. Though it may seem that we’re sacrificing brevity for the sake of inclusivity, we’re not. Rather, we’re using plain language with equity principles to accurately and justly represent people with whom we communicate. After all, the first rule of plain language is “ write for your audience .” 

Development of Guiding Principles

Guiding Principles grew out of an earlier effort to create an internal COVID-19 Response Health Equity Style Guide. That guide was developed when it became clear that long-standing systemic health and social inequities — including some that had been introduced or exacerbated by federal, state, and local policies — had put some population groups at increased risk of getting COVID-19 and having poorer outcomes when they did get sick. These groups included but were not limited to:

• Black, Hispanic, American Indian, and Pacific Islander persons
• LGBTQ+ persons
• People with self-care disabilities
• People experiencing homelessness
• People in detention facilities

This resource was so well-received that senior CDC leadership felt it should be adapted for public use beyond the scope of COVID-19 and expanded into a set of guiding principles instead of a style guide. 

CDC strives to apply best public health practices to all its work. This includes using inclusive, accurate, and accessible language that shows respect for all audiences. People do not have the same frame of reference. Communicating with people in the way they prefer is essential to public health interventions and the health of our nation.

Michelle Bonds, director of CDC’s Division of Public Affairs, led the Health Equity Working Group. Under her leadership, people aligned with the mission from across CDC joined to develop the Guiding Principles along with multiple CDC and external validators from the fields of public health, academia, health care, communication, and policy.

Moving Forward

Guiding Principles is not a style guide, and it’s not meant to be prescriptive — not every suggestion will suit the needs of every community or population of focus. Instead, we encourage organizations to use it as a resource for having conversations about messaging and for engaging with their communities and partners to build a shared vocabulary. 

CDC encourages public health professionals and partners at the federal, state, and local level to apply these Guiding Principles across their public health communication work, including when they’re creating information resources and presentations or developing and reviewing external or internal communication materials.

Guiding Principles is a living resource. It will be updated annually to keep pace with changes in language and cultural norms. Read it, share it, and join the conversation by emailing [email protected] . 

Connecting the dots between health equity and health literacy is key to enhancing public health — they are complementary concepts. Adopting a comprehensive approach in our practice that reflects this conceptual synergy will improve health and well-being for all. 

The Office of Disease Prevention and Health Promotion (ODPHP) cannot attest to the accuracy of a non-federal website.

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eHealth Literacy

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Defining health literacy and eHealth literacy

Assessing health literacy in eHealth studies

Factors associated with use of eHealth

Understanding use of eHealth: Tailoring for success

An important role for health and communication professionals

According to Pew Research Center external icon , approximately 52% of American adults in 2000 said they used the Internet compared to 89% in early 2018; a trend that is likely to continue rising.

Yet individuals are not the only ones using the Internet more. Organizations have also mobilized the Internet to deliver health services. The  World Health Organization pdf icon external icon  (WHO) reports 58% of Member States surveyed reported they have an eHealth strategy, signaling a global movement. WHO defines electronic health (eHealth) services as the cost-effective and secure use of information communication technologies to support health and health-related fields. Examples include electronic communication between patients and providers, electronic medical records, patient portals, and personal health records. A category of eHealth is mobile health (mHealth) including phones, tablets, and computers to use applications (apps), wearable tracking devices, and texting services. The research referenced on this page may include mHealth when referring to eHealth.

As more people and health organizations use eHealth services and products, we need to understand how a person’s level of health literacy influences the interaction. Equally important is how health professionals and communication specialists can provide support.

In Healthy People 2030, the U.S. Department of Health and Human Services (HHS) updated the  definition of health literacy  to include personal health literacy as well as organizational health literacy. HHS provides the following definitions:

• Personal health literacy  is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
• Organizational health literacy  is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others

Norman and Skinner (2006) external icon  define  eHealth literacy  as the ability to appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem.

Readers are cautioned not to substitute eHealth literacy for health literacy as noted by  Monkman and colleagues (2017) external icon . The authors analyzed participant responses (N=36) on the Newest Vital Sign to measure health literacy, and used the eHealth Literacy Scale (eHEALS) to assess eHealth literacy. Their findings suggest assessing health literacy and eHealth literacy separately.

In 2021, Sanders and colleagues  published the results of a randomized controlled trial in which they examined the impact of a six-week, peer-led intervention on eHealth literacy, general health literacy, HIV-related health literacy, and numeracy among people living with HIV (PLWH). The investigators used the Electronic Health Literacy Scale to measure eHealth literacy, the Rapid Estimate of Adult Literacy to measure general health literacy, the Brief Estimate of Health Knowledge and Action-HIV to measure HIV-related health literacy, and the Newest Vital Sign to measure numeracy. At the end of the intervention and six months later, the intervention group had statistically significant improvements in eHealth literacy and HIV-related health literacy compared to the control group. Neither the control group nor the intervention group showed any statistically significant improvement in general health literacy or numeracy.

(For more on numeracy, see Numeracy Research Summaries and Understanding Literacy & Numeracy . Read more about health literacy and PLWH  too.)

As more people and health organizations use eHealth services, we need to understand how a person’s level of health literacy influences the interaction.

Kim & Xie (2017) external icon  conducted a literature review (N=74) to assess how people with limited health literacy use online health services. Only nine studies reported interventions focused on improving health literacy. The review indicates that six of those nine reported positive effects on knowledge, skills, and confidence using eHealth. Measures:  Thirty-three studies reported measuring participants’ health literacy level. Five studies used the Short Test of Functional Health Literacy in Adults (S-TOFHLA) and four studies used the Rapid Estimate of Adult Literacy in Medicine (REALM). Eight of the 33 studies used the eHealth Literacy Scale (eHEALS), which as noted previously may not accurately capture health literacy but rather a sub-category—eHealth literacy.  Recommendations: When designing websites, the authors suggest improving readability in web-based apps and mobile apps (sixth grade reading level or below), increasing content available for people with limited English proficiency, using plain language strategies such as shorter sentences, use of bullets, and incorporating more consistent design with icons and pictures.

Most studies in this review reported a mean participant age between 46-66 years. However, in an intervention study by  Horvath & Bauermeister (2017) that focused on a population of men self-identifying as having sex with men, the mean age of participants was of 21 years. Researchers assessed participants’ eHealth literacy and randomized them into tailored and non-tailored message groups for an HIV/STI (sexually transmitted infection) online intervention. Participants with low eHealth literacy in the non-tailored group were less likely to educate others about HIV/STIs and less likely to report deciding to get tested at 30-day follow-up. Findings from this study suggest that tailoring and eHealth literacy may influence behavior change.

Visit  Health Literacy Online external icon  to access research-based guidance for better web and digital tool design.

Wearable digital devices (also known as fitness trackers) have become popular tools for providing users with information about their health. However, a variety of barriers to their use lead to disparities among populations. Holko and colleagues (2022) identified those barriers by surveying more than 1,000 adult patients in six Federally Qualified Health Centers (FQHCs) across the United States. FQHCs are community-based health care providers that receive federal funds to deliver primary care services in areas with limited access to medical care.

Of the five hindering factors to device ownership, three were related to health literacy: language barriers, lack of access to devices due to cost, and the need for information on how to use the devices. Of the six helping factors to ownership, three were related to health literacy: the belief that the devices could provide relevant health information, the desire to learn how the devices could provide health information, and the desire to have access to the devices (thus making the information they provide accessible). The authors also noted the importance of using culturally appropriate language when referring to these devices. When the researchers used the term “fitness tracker,” some Spanish-speaking participants were concerned that the devices could track their movements. The authors also provide recommendations for overcoming barriers to the use of wearable digital health devices.

As more people use the internet and social media platforms to access health information, more organizations are using these digital channels to share their health information. A  study published in 2022 by Arshanapally et al indicated that a paid digital marketing campaign increased the rate at which parents of newborns through preschoolers downloaded a mobile health app that tracks childhood milestones. The authors found that messages—in English and Spanish—that included animated GIFs and simple, direct calls to action prompted more readers to click through to the app. The authors also discuss the features and limitations of the digital marketing platforms they used.

A cross-sectional study published in 2021 assessed whether health literacy, access to technology, and sociodemographic factors are associated with online health information-seeking behavior. Questions from the Health Information National Trends Survey  were used to measure health-related information seeking. Health literacy was assessed using three health literacy items from the  2016 Behavioral Risk Factor Surveillance System Questionnaire . The data showed that people with higher health literacy scores and greater access to technology devices were more likely to use the internet for health information compared to people with lower health literacy scores or less access to technology.

The authors also found that

• Health-related internet use among adults increased with age until about 38 years, decreased between 38 and 71 years, and increased again after 71 years.
• People who reported poor or fair health status had higher health-related internet use scores than people who reported good, very good, or excellent health status.
• Nearly half of respondents used the internet to communicate with their health care provider.
• More than half of respondents searched for online information about diet, weight, and physical activity.
• More than half of respondents went online to search for health-related information about someone else.

In a survey conducted by Escoffery’s (2017) external icon , more than 70% of the 400 participants reported they owned laptops and smartphones, and nearly half reported using the Internet several times a day. Female participants reported higher use of health apps and were more likely to have apps related to exercise and diet compared to males. However, males were more likely to report looking for information for themselves the last time they searched the Internet compared to females.

Spooner and colleagues (2016) external icon  surveyed adults (N=3677) and found that Hispanic people, people the authors categorized as non-Hispanic others, and people from higher income households were more likely to have communicated with a provider via text, phone app, or social media. Those who preferred non-Internet sources of information such as books, primary care provider, or brochures were more likely to be people over 65 years, Hispanic people, and people with less than a high school education.

Trust and confidence

In addition to socio-demographics, we must also consider the possible association between eHealth literacy and perceived trust in source, self-efficacy (confidence), and other factors. Paige and colleagues (2017) external icon  surveyed participants (N=402) to assess use of internet health resources in the last 12 months. While 75% of respondents said they had skills to evaluate online health resources, only 60% reported confidence in evaluating the quality or these resources and making health decisions based on that information. Females with lower eHealth literacy reported higher trust in online sources compared to men with low eHealth literacy and compared to females with higher eHealth literacy. Researchers also learned that older adults with low eHealth literacy were more likely to trust online channels compared to younger adults. Compared to Caucasian (White) participants with high eHealth literacy, Black/African American participants with high eHealth literacy were more likely to report higher trust in online information from government, charitable, and religious organizations.

A growing number of studies are exploring the use of eHealth resources and self-management of chronic conditions.  Stellefson and colleagues (2017) external icon  surveyed (N=1270) patients with chronic obstructive pulmonary disease (COPD). Higher eHealth literacy was associated with higher COPD knowledge and use of web-based resources. Most participants were laptop and desktop users, and 25% reported use of wireless devices including phones. Greater COPD self-efficacy was significantly associated with finding helpful resources online, knowing how to use them to make health decisions, and feeling able to distinguish quality of materials. Escoffery (2017) external icon , referenced earlier, also reported similar findings related to self-efficacy. Participants in that study reported high trust in doctors, the Internet, and government agencies.

Other factors

As a follow-up to a failed attempt to enroll participants for a trial,  Thies and colleagues (2017) external icon  conducted interviews (N=22) and learned about the various aspects of readiness to use eHealth resources among patients and health professionals. The authors suggest a health team needs to assess patients’ eHealth literacy including proficiency with technology and whether patients have phones that support apps. It is equally important to assess patients’ motivation for behavior change and the degree to which their health condition is under control. The authors learned that barriers that prevented health professionals from adopting the app in this trial included: not having enough time in a twenty-minute visit to explain and download the app, lack of integration to an electronic health record, and no dedicated staff to support the trial.

In the  Spooner and colleagues (2016) external icon  study described earlier, 65%-85% of participants reported interest in exchanging information with providers electronically, but 68% said they had no online patient-provider communication. Researchers posited that access offered by the provider and the individual’s personal health information online access behavior predict occurrence of patient-provider communication.

From these few studies we know adults use eHealth resources. We also know that health literacy and eHealth literacy are influential factors in successful use of eHealth resources. What we are still learning is how greater emphasis on eHealth may disproportionately affect groups with limited health literacy. In light of what is known,

Ask patients about their preferred and available communication options.

Health professionals can

• Assess how confident a person feels about managing their own health.
• Identify a patient’s knowledge or skill gaps and together  create a plan that is understandable .
• Identify a health team member who can teach patients how to evaluate web content external icon and who can suggest top web sources external icon for patient health information.
• Ask patients about their preferred and available communication options, e.g., telephone, teleconference, email, apps, patient portal, or another preference.

Communication professionals can

• Use  plain language strategies external icon  – shorter sentences, bulleted lists.
• Assess readability of all materials.
• Use  Health Literacy Online external icon  recommendations.
• Incorporate images and graphics that complement and reinforce text.
• Design materials for populations with limited English skills.
• Consider demographic characteristics when determining the channel and source for different audience segments.

Health Literacy Topics

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• Food Literacy
• Heart Disease
• Other Conditions
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Digital Health Literacy as a Predictor of Awareness, Engagement, and Use of a National Web-Based Personal Health Record: Population-Based Survey Study

Affiliations.

• 1 Centre for Global Health and Equity, School of Health Sciences, Swinburne University of Technology, Hawthorn, Australia.
• 2 Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Australia.
• 3 Beyondblue, Melbourne, Australia.
• 4 School of Health and Social Development, Faculty of Health, Deakin University, Geelong, Australia.
• 5 Faculty of Public Health, Thammasat University, Bangkok, Thailand.
• PMID: 36112404
• PMCID: PMC9526109
• DOI: 10.2196/35772

Background: Web-based personal health records (PHRs) have the potential to improve the quality, accuracy, and timeliness of health care. However, the international uptake of web-based PHRs has been slow. Populations experiencing disadvantages are less likely to use web-based PHRs, potentially widening health inequities within and among countries.

Objective: With limited understanding of the predictors of community uptake and use of web-based PHR, the aim of this study was to identify the predictors of awareness, engagement, and use of the Australian national web-based PHR, My Health Record (MyHR).

Methods: A population-based survey of adult participants residing in regional Victoria, Australia, was conducted in 2018 using telephone interviews. Logistic regression, adjusted for age, was used to assess the relationship among digital health literacy, health literacy, and demographic characteristics, and the 3 dependent variables of MyHR: awareness, engagement, and use. Digital health literacy and health literacy were measured using multidimensional tools, using all 7 scales of the eHealth Literacy Questionnaire and 4 out of the 9 scales of the Health Literacy Questionnaire.

Results: A total of 998 responses were analyzed. Many elements of digital health literacy were strongly associated with MyHR awareness, engagement, and use. A 1-unit increase in each of the 7 eHealth Literacy Questionnaire scales was associated with a 2- to 4-fold increase in the odds of using MyHR: using technology to process health information (odds ratio [OR] 4.14, 95% CI 2.34-7.31), understanding of health concepts and language (OR 2.25, 95% CI 1.08-4.69), ability to actively engage with digital services (OR 4.44, 95% CI 2.55-7.75), feel safe and in control (OR 2.36, 95% CI 1.43-3.88), motivated to engage with digital services (OR 4.24, 95% CI 2.36-7.61), access to digital services that work (OR 2.49, 95% CI 1.32-4.69), and digital services that suit individual needs (OR 3.48, 95% CI 1.97-6.15). The Health Literacy Questionnaire scales of health care support, actively managing health, and social support were also associated with a 1- to 2-fold increase in the odds of using MyHR. Using the internet to search for health information was another strong predictor; however, older people and those with less education were less likely to use MyHR.

Conclusions: This study revealed strong and consistent patterns of association between digital health literacy and the use of a web-based PHR. The results indicate potential actions for promoting PHR uptake, including improving digital technology and skill experiences that may improve digital health literacy and willingness to engage in web-based PHR. Uptake may also be improved through more responsive digital services, strengthened health care, and better social support. A holistic approach, including targeted solutions, is needed to ensure that web-based PHR can realize its full potential to help reduce health inequities.

Keywords: disadvantaged populations; eHealth; electronic health records; health equity; health literacy; mHealth; mobile health; vulnerable populations.

©Christina Cheng, Emma Gearon, Melanie Hawkins, Crystal McPhee, Lisa Hanna, Roy Batterham, Richard H Osborne. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 16.09.2022.

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Empowering Patients: Promoting Patient Education and Health Literacy

Pradnya brijmohan bhattad.

1 Cardiovascular Medicine, Saint Vincent Hospital, University of Massachusetts Chan Medical School, Worcester, USA

Luigi Pacifico

Patients are generally keen to understand and obtain more information about their medical conditions. There exists a need to develop updated and thorough yet concise patient education handouts and to encourage healthcare providers (HCPs) to use uniform patient education methods.

A thorough review of literature on patient education material was performed prior to starting the study. A comparison with different resources regarding the appropriateness of patient education was done. Educating HCPs to effectively use patient educational materials incorporated into the electronic health record system, including electronic methods, such as the use of a patient portal, to help educate patients. 

Strategies were formulated to reduce the amount of processing and attending time required for fetching appropriate materials and lead to fast, efficient, and effective patient education. To improve the physical and psychosocial wellbeing of a patient, personalized patient education handouts, in addition to verbal education by the HCPs, augment the betterment of patient care via shared decision making and by improving patient satisfaction and health literacy.

Introduction

Patients are often eager to understand and know more about their medical conditions and health situation, and educating them with the most relevant, current, consistent, and updated information helps patients and their families significantly in the medical care and decision-making process [ 1 ]. 

Patients need formal education on the disease condition; they need to know their ailment, understand their symptoms, be educated on the diagnostics, appropriate medication use, and should be taught when to call for help. Several patient education handouts for various conditions are available, and there exists a need to assess which one is better suited for a particular disease/condition encountered and provides concise information. Patient education materials help educate the patients on their health conditions, improves their health literacy, and enhances and promotes informed decision-making based on the most current and updated medical and clinical evidence as well as patient preference [ 2 ].

The aim of this study was to develop updated patient education handouts and materials in addition to verbal counseling of the patients to help them understand the disease condition, diagnostic studies, proper advice on medications, and when to call for help. And to encourage healthcare providers (HCPs) to use uniform patient education materials.

The objectives of this study are 1) the implementation of quality improvement techniques of Plan-Do-Study-Act (PDSA) cycles on patient education in clinical settings; 2) to enhance the delivery of patient education and create awareness amongst the HCPs regarding the importance of patient education and improved health literacy; 3) to verify if patient education handouts have the minimum necessary information that patient should know; 4) to compare patient education handouts from databases integrated in the electronic health record (EHR) with standard patient education database websites like the Centers for Disease Control and Prevention website, and MedlinePlus® site to make sure that they have the minimum necessary information; and 5) to educate and encourage HCPs on the use of appropriate patient education articles in the EHR and utilize an electronic patient portal for patient education, help transition the patient education to an electronic form, and increase efficacy and consistent patient education.

Materials and methods

A comprehensive review of the patient education materials on the most common medical ailments in various clinical settings was performed. We compared the existing patient education database integrated in the EHR with the standard resources such as the CDC, MedlinePlus via retrospective chart study format to ensure the minimum necessary information is available. 

A comparison of existing educational material was completed by analyzing other patient education materials from resources such as UpToDate (the basics/beyond the basics), MedlinePlus, US National Library of Medicine of NIH, CDC, and the US Department of Health and Human Services to ensure that effective, most updated, current, and evidence-based information is provided to the patients from the educational materials.

Search words were incorporated to help search for the educational articles in the existing EHR by the title of the article. Educational materials studied were relevant to the common medical ailments in various clinical settings. The patient handouts were made available in such a way that these should be able to be sent either through an electronic patient portal or printed out.

HCPs were educated in a session with pre- and post-lecture survey qualitative and quantitative questionnaires. The impact of these interventions was further assessed by pre- and post-intervention surveys after educating the HCPs.

Uniform updated patient education handouts were created after comparing them with standard resources. A pre-test survey questionnaire was obtained to discuss with HCPs regarding the current knowledge and practices of the usage of patient education handouts and the understanding of EHR to utilize uniform and standardized patient education handouts. After educating the HCPs, their knowledge regarding the use of EHR to effectively use patient education handouts was tested in a post-test survey questionnaire. After completion of the pre and post-test survey questionnaire by HCPs, analysis of the data performed (Figures ​ (Figures1 1 - ​ -20 20 ).

HCPs - healthcare providers

"Do you feel that attending and processing times required for fetching appropriate educational articles will be reduced if standard materials are outlined?"

“Do you think that efficient patient education is effective in creating and improving adherence to treatment, medication compliance, and for improving overall patient health?”

Quality improvement (QI), problem-solving, and gap analysis

QI techniques, including PDSA cycles, to improve patient education implemented in various clinical settings [ 1 ].

Reasons for Action

There is a need for updated and uniform patient education materials in addition to verbal counseling of the patient to help them understand the disease condition, diagnostic studies, proper advice on medications, and when to call for help, thereby enhancing health literacy. There exists several patient education materials for various ailments, and the need to assess which one is better suited for a disease condition and contains concise information.

Initial State

We reviewed the available patient education material from the patient education database integrated in the EHR, and compared it with current standardized resources such as MedlinePlus, US National Library of Medicine of NIH, CDC, and the US Department of Health and Human Services. A thorough review of literature on patient education material was performed prior to starting the study.

We compared more than one source regarding the appropriateness of patient education, most specifically, how to use the medications and when to call for help. The quality of educational materials regarding disease education, diagnostics education, education on medication use, and education on when to call for help was assessed. The resources described above were utilized for comparison.

Gap Analysis

A graph of the gap analysis is displayed in Figure ​ Figure21 21 below.

Solution Approach

It was noticed that the educational materials were available only in printed format. Enrolling patients on the electronic patient portal helps send educational materials to the patient as a soft copy in a faster and more efficient electronic format. 

Higher attending and processing time is required for fetching appropriate materials due to the unavailability of exact materials and using non-updated educational materials. Therefore, creating an index of educational articles on commonly encountered medical situations and ensuring that these articles are current and updated might make the process more efficient. 

There is a very limited time availability to impart specific educational elements with the limited appointment times. Appropriately detailed educational materials can be sent to the patient via a patient portal even after the patient encounter has ended. For patients with limited technology/computer use, educational materials can be mailed if they're missed during the encounter. 

Inadequate educational methods were utilized; thus, incorporating educational articles from resources other than the databases in the existing EHR, and using the index of educational articles on commonly encountered medical situations were applied.

Inefficient usage of the operational capacity of EHR for patient education, using database integrated in the EHR, and lack of training were identified. As a result, HCPs were trained on using educational materials for their patients in an efficient manner, and patient education was prioritized.

Rapid Experiment: Plan-Do-Study-Act Cycle

Plan: Plan to use appropriate patient education material from several sources made available in the index of the educational articles.

Do: Counsel and verbally educate the patients, along with providing educational materials. Obtain a verbal read-back from the patients about how to use medications and when to call for help.

Study: Use the teach-back method to make patients explain back the information provided in their own words to see if they understood the disease, diagnostics, medication use, and when to call for help to improve health literacy.

Act: If a patient has questions, address them appropriately and if need be, set up a follow-up appointment. 

Actions Taken

An index of educational materials relevant to the common medical ailments in various clinical settings was created. This index of educational materials was to guide HCPs in choosing appropriate and relevant articles in an efficient, quick, and timely manner for patients in various clinical settings. Effective use of patient educational materials in the database incorporated into the EHR, including electronic methods such as the use of the patient portal to help educate patients, was promoted. Alternate resources other than those from the database in the existing EHR were utilized. Educational materials in printed format were made available for patients with limited technology access. The amount of time required for fetching appropriate materials was reduced by creating and referencing to an index for commonly encountered medical situations.

Efficient and faster patient education was imparted with reduced processing and attending time required. Prioritized health education to improve health literacy. Efficient usage of operational capacity of database integrated in the EHR was undertaken to improve health literacy. HCPs were trained to use patient education materials efficiently. 

What Helped

Fast, efficient, and effective patient education helped patients and their families significantly in medical care and shared decision-making based on the most current and updated clinical evidence and patient preference. Creating an index of educational materials relevant to the medical conditions commonly encountered thereby reduced the amount of processing and attending time required for fetching appropriate materials. Effectively using patient educational materials in the database incorporated into the EHR, including electronic methods such as the use of a patient portal to help educate patients, using soft copy (electronic-copy) reduced requirement of printed materials. Correction of misconceptions that patients may have helped improve health literacy. 

What Went Well

Helping engage, encourage, and empower the patients in participating in their own health care and treatment decisions. Enhanced patient satisfaction and better outcomes (for instance, educating a patient on osteopenia encouraged them to continue/start the vitamin D supplementation, participate in regular exercise, healthy diet preferences, and health promotion). 

What Hindered

High HCP turnover rate with changing schedules hindered consistent use of patient education materials. Insufficient number of HCPs trained for patient education.

What Could Improve

Incorporating educational materials in the video format for patients who do not wish to read or talk about their health situations. Enhanced training of all the HCPs for effective and efficient use of patient education resources to allow consistency in effective patient education.

Personalized patient education engages, encourages, and empowers patients in participating in their own health care and treatment decisions and leading to better outcomes, decreased need for excess diagnostic testing, and enhanced patient satisfaction [ 3 , 4 , 5 ]. This needs motivation on the part of the resident doctors, nurse practitioners, physician assistants, physicians, and the allied staff. 

The Advisory Committee on Training in Primary Care Medicine (ACTPCMD) recommends that Health Resources & Services Administration’s (HRSA) Title VII, Part C, Section 747 and 748 education and training programs should prepare students, faculty, and practitioners to involve patients and caretakers in shared medical decision-making which can happen well with better patient education process [ 6 ].

We as HCPs should cultivate good habits amongst ourselves to ensure patients know about their condition and treatment well. This will help increase medication and treatment compliance amongst patients and enhance the physician-patient relationship to a higher level.

Conclusions

To improve the physical and psychosocial well-being of a patient, personalized patient education materials, in addition to verbal education by the HCPs, augment the betterment of patient care via shared decision making and by improving patient satisfaction. There is a need to reiterate that HCPs understand patients' concerns and provide effective patient education and counseling for effective health care delivery.

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The authors have declared that no competing interests exist.

Human Ethics

Consent was obtained or waived by all participants in this study

Animal Ethics

Animal subjects: All authors have confirmed that this study did not involve animal subjects or tissue.