Limited health literacy has been associated with a range of adverse health outcomes including decreased use of preventive health services, poorer disease-specific outcomes for certain chronic conditions and increased risk of hospitalisation and mortality. Although the majority of research has been conducted in the adult population, there is a small and growing body of research on this subject in the paediatric literature. In this article, we will review the research on health literacy, consider the range of other communication skills associated with limited health literacy and explore strategies to improve patient–provider communication for clinicians who care for families with limited health-literacy skills.
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Box 1 Patient–provider communication strategies
Clinical skills (remove unnecessary complexities)
Communicate using plain language
Use plain words and keep sentence structure simple.
Avoid using jargon
Jargon can include both medical terminology (ie, anaemia) or words such as “diet”, which has both lay and medical meanings. Both types of jargon can decrease comprehension.49
Limit items discussed
Focus the discussion on the two or three most important ideas and reiterate these messages. Too much information or too many options may be overwhelming and sometimes result in decisions that are inconsistent with a patient’s values.50
Repeat important points
Provide clear, specific action-oriented steps
Information should answer the question, “What do I need to do?”
Take the patient’s perspective and consider what points remain unclear
Use multiple forms of communication
Present the most important information through a variety of communication modalities
Think like an educator!
Be creative and engage the learner.
Help patients to ask questions
Provide an environment conducive to learning and asking questions
Parents with lower literacy may ask fewer questions and be less likely to describe possible barriers to recommendations. Lack of understanding can be shameful to the patient. Questions such as, “Do you understand?” may actually inhibit discussion. Consider instead, “I have asked you so many questions. What questions do you have for me?”
“Ask Me 3”
Ask Me 3 is a campaign to promote health communication by having patients ask three questions in every healthcare encounter: (1) What is my main problem? (2) What do I need to do? and (3) Why is it important for me to do this? This campaign is sponsored by the Partnership for Clear Health Communication. Although research to assess the effectiveness of Ask Me 3 is ongoing, when we wrote this article, we were unable to find published studies. (www.askme3.org)
Learn to confirm comprehension
Confirm comprehension with the “show me” or “teach back” method53
Ask the patient or parent to state or demonstrate the information presented. Using an iterative process, correct misunderstandings and have the patient or parent restate the information until comprehension is confirmed.
Develop shared understanding
Explore the attitudes, beliefs and understanding of your patients and their families. Problem solve together about possible challenges or barriers to care.
A 4-year-old boy with asthma arrives at his pediatrician’s office with significant shortness of breath. His mother is clearly anxious and frustrated. Despite giving him medicine every few hours, his breathing seems only to have worsened. When asked to demonstrate how she has been giving the medicine, his mother produces a corticosteroid inhaler. Unable to read the prescription, she had accidentally switched his “controller” medicine for his “rescue” medicine.
Over the past decade, there has been growing interest in the relationship between literacy and health outcomes. From this work, the concept of health literacy has emerged. Health literacy is “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions”.1 In 2004, the Institute of Medicine (IOM) published a report that summarised the health-literacy field and proposed areas of further investigation. The IOM concluded that adults with limited health literacy have less knowledge of disease self-management and health-promoting behaviours, report poorer health status, are less likely to use preventive services, are more likely to be hospitalised and are more likely to suffer poorer health outcomes for certain chronic conditions.1
The importance of health literacy has also been endorsed by a number of other agencies, which include the US Department of Health and Human Services, which identified improving health literacy as a specific objective in Healthy People 2010;2 the European Commission, which cited the importance of health literacy in an influential 2002 health policy report;3 and the World Health Organization, which included health literacy as a key component of global health promotion.4
In this paper, we will examine the epidemiology of health literacy, consider the range of skills associated with limited health literacy, review the research in both the adult and paediatric literature and propose strategies for clinicians who care for families with limited health-literacy skills.
The Adult Literacy and Life Skills (ALL) survey was an international survey conducted in 2003 among seven countries or regions: Bermuda, Canada, Italy, Norway, Switzerland, the United States and the Mexican State of Nuevo Leon.5 In the ALL survey, literacy and numeracy skills were described by five levels of proficiency. Experts considered level 3 literacy skills to be the minimum level necessary to meet the demands of an emerging knowledge society and information economy. In the ALL survey, prose literacy is defined as “the knowledge and skills needed to understand and use information from texts including editorials, new stories, brochures and instruction manuals”.5 Approximately 33% of adults in Norway, 40% of those in Canada and Bermuda, 50% of adults in Switzerland and the United States, 80% of those in Italy and almost 90% of adults in Nuevo Leon demonstrated less than level 3 prose literacy.5 Additionally, countries varied significantly in the size of the gap in literacy skills between adults in the bottom 5% and those in the top 95%, with the gap being smaller in some countries (Norway and Switzerland) and larger in others (Italy).5 As an international study of primarily developed nations, results of the ALL survey suggest that the effects of limited literacy probably affects individuals throughout the world.
In the ALL survey, lower literacy skills were associated with lower educational attainment, poorer economic outcomes, older age and poorer self-reported health status; these relationships have been supported by other studies.1 5–8 Although literacy is associated with educational attainment, within each educational level individuals demonstrate a broad range of literacy skills.5–7 Relying on educational attainment to predict adult literacy skills generally results in an overestimation of skill level.7
Although the United Kingdom did not participate in the ALL survey, it did participate in the International Adult Literacy Study (IALS), the predecessor of the ALL survey and the first international comparison of adult literacy skills.9 Conducted between 1994 and 1998, the IALS assessed skills among 75 000 individuals in 22 nations.9 In the IALS, 42% of Canadians, 47% of Americans and 52% of adults in the United Kingdom demonstrated below level 3 prose literacy skills.9 In 2003, the British Department for Education and Skills conducted the Skills for Life survey, a national literacy survey of English adults.10 On the basis of this survey, 16% of English adults (5.2 million) had entry-level literacy skills, which were at or below the level expected of an 11 year old (ie, below a D–G grade in the General Certificate of Secondary Education qualification).10 Given differences in the scoring and testing between the IALS and Skills for Life survey, it is difficult to draw direct comparisons between the outcomes of these two surveys. However, both of these studies suggest that the United Kingdom faces many of the same literacy issues as other developed nations.
In the United States, the 2003 National Assessment of Adult Literacy (NAAL), a nationally representative survey of adult English literacy skills, included an assessment of adult health literacy.6 Limited health-literacy skills were associated with poverty, limited education, minority status, immigration and older age.6 Results from the NAAL suggest that 36% of the US adult population have limited health-literacy skills.6 This means that 77 million US adults may be unable to determine when to take a medication on the basis of directions associating medication administration with meals or may have difficulty identifying three substances that could interact with an over-the-counter medication based upon the drug label.6
In the NAAL, adults in the lowest health-literacy group were less likely to obtain health-related information from newspapers, books, magazines and the internet than were those with higher health literacy.6 They were also less likely to obtain health-related information from family, friends, co-workers or healthcare providers than adults in higher health-literacy groups, but were more likely to obtain health-related information from the TV or radio.6 These results highlight the importance of considering the accessibility of various forms of media when providing health education to individuals with lower literacy skills.
All countries participating in the ALL survey demonstrated a positive association between adult literacy skills and parental educational attainment, although the strength of this relationship varied between countries.5 Studies of early literacy have found that maternal education is associated with a preschooler’s engagement in home-based literacy activities such as reading together – an activity that has been associated with improved child language development and emergent early literacy skills.11 12 Data from the 2003 NAAL suggest that parents with limited literacy skills were less likely to read to their young children five or more days a week and were less likely to have children between the ages of 3 and 5 who knew the alphabet.13 Limited parental literacy may serve as a risk factor for the development of a child’s emerging literacy skills.
The scope of health literacy
Although the majority of instruments used to measure health literacy focus on reading comprehension or numeracy skills, the concept of health literacy encompasses a wider array of abilities including reading, writing, listening and oral communication. Low literacy skills have been linked to poorer expressive communication, understanding and recall.7 A recent study revealed that patients with low literacy levels were significantly less likely to ask questions, request additional services or seek new information during a medical encounter.14 In the context of patient–provider communication, limitations in these skills may affect how a parent describes her child’s symptoms, understands and remembers information or participates in medical decision-making.7
Poor literacy skills are often associated with a significant amount of shame and embarrassment. In one study, a third of patients with limited health-literacy skills denied any difficulties with reading.15 Of those who acknowledged literacy issues, almost 40% endorsed feelings of shame – with the majority of this group having never told their spouse or children about their literacy challenges.15
Thus, in addition to the specific skills required by patients to make health-related decisions, one must consider the wider context in which patients acquire health-related information. An individual’s ability to obtain, process and understand information is tied to the complexity of the information presented, the cultural overlay of health beliefs and the quality of patient–provider communication.7 As such, many believe that the “problem of health literacy” is as much a problem of insufficient dedication of the staff within the healthcare system to the issue of reducing unnecessary complexity and communicating more effectively as it is a problem of limited literacy skills.16
With the increasing complexity of healthcare, the specialisation and technological advancements in medicine, as well as the growing reliance on self-management and home care in the treatment of chronic conditions, there are increasing literacy-based demands placed on patients and their families. In this environment, the role of health literacy probably assumes a greater contribution to health outcomes.
Health literacy and health outcomes in adults
Multiple studies have analysed the association between health literacy and health-related knowledge. Relationships between limited health-literacy skills and low levels of disease-specific knowledge have been demonstrated for a number of chronic conditions including asthma, diabetes, hypertension and congestive heart failure.7 17
Limited health literacy has been associated with decreased use of preventive health services such as immunisations and cancer screenings.18 It has been associated with suboptimal disease-management skills as demonstrated by an increased likelihood of improper inhaler technique in adults with asthma and a decreased ability to appropriately identify medications in adults with coronary artery disease.19–21 In addition, limited health-literacy skills have been consistently associated with worse health outcomes (ie, poorer physical functioning, poorer quality of life or late-stage disease detection) in conditions such as asthma and cancer,22 23 increased rates of hospitalisation24 and mortality.25 Limited health-literacy skills, however, have yielded mixed results in diabetes, HIV and depression.1 7 26–30 Similarly, studies of health literacy and medication adherence have also been inconsistent.7 26 27 31
Health literacy and child-health outcomes
Despite a significant body of health-literacy research in the adult medical literature, there have been few studies assessing the relationship between parental health literacy and child-health outcomes. A recent study demonstrated that limited parental health-literacy skills were associated with higher rates of ER visits, hospitalisations and severity of asthma symptoms for children with asthma.32 Ross found that parental literacy, but not child literacy, was associated with HbA1c levels in children with type 1 diabetes.33 Also, homeless mothers with limited health literacy were more likely to report barriers to giving their children the medication they needed than homeless mothers with adequate health literacy.34
By contrast, Sanders found no association between parental health literacy and a child’s healthcare usage or healthcare costs among a population of urban children.35 Similarly, in another study of children seen for acute outpatient care, there were no associations between parental health literacy and comprehension of a child’s diagnosis or the ability to name and administer prescribed medications.36
In one study, parents with lower literacy levels attending a clinic staffed by residents actually reported higher-quality patient–provider relationships than did parents with higher literacy skills.37 The authors posit that this finding does not represent a true difference in the quality of the patient–provider relationship, but instead suggests that individuals with lower literacy levels may have lower expectations and be less critical of their healthcare interactions.
Perhaps the effect of parental health literacy on child health will be more keenly observed in children with chronic conditions rather than in relatively healthy children for whom the degree of self-management is minimal. In addition, how parental health-literacy skills affect child-health outcomes may be influenced by the child’s age and the child’s own literacy skills. These and other questions regarding the role of parental health literacy in psediatric health outcomes continue to be an area of active research.
Measurement of health literacy
Most of the health-literacy instruments measure reading recognition, reading comprehension and/or numeracy skills. The Rapid Estimate of Adult Literacy in Medicine (REALM) and Test of Functional Health Literacy in Adults (TOFHLA) are two of the most commonly used health-literacy measures. These instruments, or a modified form of them, have been validated for use in adolescents.38 39 The REALM and TOFHLA are primarily used for research purposes, and shortened versions of both tests are available. In addition, short screening tools, such as the “Newest Vital Sign” have been developed for use during office visits.40
Practitioners often have difficulty identifying individuals with limited literacy skills without the use of standardised instruments,7 41 and developers of brief screening tools have promoted the idea of screening in the clinical setting.40 We, however, question the usefulness of screening patients for limited health-literacy skills, noting that the only study examining the effect of a screening programme failed to show benefit for patients.42 Currently, such testing could lead to stigma with no clear benefit. Instead, materials written in plain language, employing other clear communication techniques and confirming comprehension should be provided as part of medical care for all patients regardless of their literacy level.43
STRATEGIES FOR IMPROVING CARE FOR PATIENTS WITH LIMITED HEALTH LITERACY
Below we have listed some strategies that can be incorporated into a patient–provider interaction to enhance understanding and improve the quality of patient–provider communication.
Simplify the written word
The National Work Group on Literacy and Health recommends keeping written patient materials at the 5th grade level (generally 10–11 years of age) or lower and supplementing them with pictures or other forms of non-written communication.44 Hundreds of studies have shown that the reading level of educational material for patient often exceeds the reading ability of its intended audience.7 When assessing the readability of patient materials, clinicians might also consider documents such as appointment reminders, directions and patient intake forms as well as handouts for patient education.
Use strategies to improve comprehension and patient–provider communication
Clinicians can use a number of techniques to improve the quality of patient–provider communication. These strategies aim to improve communication by helping clinicians clarify their message and engage the parent in the decision-making process. Limiting the amount of information, using plain language, presenting recommendations as discrete action-oriented steps and assessing comprehension are some techniques suggested for improved communication.45–48 In addition, engaging the patient in shared decision-making and exploring possible barriers to following recommendations may improve patient adherence and health outcomes. Box 1 provides descriptions of several patient–provider communication strategies.
Perform a “literacy walk through”
Providers can evaluate the literacy demands placed on a parent bringing a child for a visit by performing a “literacy walk through.”54 Clinicians could consider the skills needed to navigate to the front desk, complete the sign-in process and participate in the visit. Attention should be devoted to signs, written information or directions that might be particularly challenging for families with limited health literacy.
Promote early child literacy and language skills
Reading to young children is an important part of developing early literacy and language skills. Programmes such as Reach-Out-And-Read, which encourage early literacy skills by providing books at well-child visits, can serve as an opportunity to model how books can be used to promote language development even if the parent’s reading abilities are limited. Information regarding community-based adult-literacy programmes can also be provided to all families in a sensitive non-stigmatising manner. Benefits for children participating in Reach-Out-And-Read have been supported in the literature.55
Several experts in the field of health literacy have proposed mechanisms by which health-literacy skills may be linked to poorer health outcomes.1 7 16 56 One conceptual model proposed by Paasche-Orlow and Wolf considers the contributions of both patient factors and system-based factors in influencing how limited health-literacy skills might be associated with the following three health-related processes: (1) access and utilisation of healthcare; (2) patient–provider communication; and (3) self-care management.16 Within this framework, the mechanisms by which an individual’s health-literacy skills interface with systemic demands can be used to consider areas of further research or possible interventions for families with limited health-literacy skills.
Consider the challenges a parent faces when navigating through a complex healthcare system. The ability to “navigate” includes both the tactical skills needed by an individual to successfully manoeuvre through a complicated healthcare centre filled with signs and placards as well as the ability to negotiate the complex web of regulations and bureaucracy found in many healthcare systems. Studies associating issues of access and healthcare use have been primarily conducted in the United States, whose complex multiple-payer system may pose a unique set of challenges when compared with the healthcare systems of other nations. Research conducted within other healthcare models may provide insight into how both individual health-literacy skills and systemic demands influence the association between health literacy and healthcare access and usage.
Patient–provider communication is another process through which health outcomes are probably affected. For example, little is known about how a parent’s understanding of specific terminology affects the quality of a child’s care. A study of parental comprehension of the word, “wheeze”, suggested that parents who understood the meaning of the word “wheeze” were more likely to report “wheezing” in their children.57 Providers typically fail to confirm that their patients understand new ideas or treatment plans, though doing so has been associated with better diabetes control.53 Confirming comprehension can be done with a “show me” or “teach back” method in which patients demonstrate their understanding and clinicians give directed feedback to correct errors until mastery is established. For example, after teaching a family how to use an inhaler device, each person who will be participating in administering the medication can be asked to show how they will use the device (ie, “Show me how you plan to use this inhaler”). The clinician can observe the family’s technique and provide focused feedback. This iterative process continues until the family demonstrates they have attained the goal. This teaching approach can improve shared understanding and decrease the chance of errors made through miscommunication.53
One of the most commonly proposed links between health literacy and poorer health outcomes has been through decreased self-care management skills, with significant interest in the role of medication adherence. Although limited health literacy has been associated with a decreased likelihood of appropriately identifying medications and doses,20 studies of medication adherence have produced mixed results.7 26 27 31 Perhaps other factors, such as family and social support mediate the relationship between health literacy and medication adherence. As researchers search for interventions to better support self-care management for various chronic conditions, understanding the role of these mediating variables may provide an important key to maximising self-care management for families with limited health literacy.
Research has demonstrated that limited health-literacy skills have important health-related implications for children and adults. Although the precise mechanism for the relationship between health literacy and health outcomes remains unknown, it is probably complex, involving individual and systemic factors. Without appropriate interventions, an individual’s limited health-literacy skills may compromise his/her ability to engage fully in healthcare interactions. At a systemic level, the complexities of the medical system, the culture of medical care and the growing literacy-based demands placed on the patient may have substantial effects on the individual or family with limited health-literacy skills. The literature on health literacy should be a call to redirect significant resources not only toward patient education but also toward redesigning the system to promote and support self-care. Healthcare providers for children and the systems in which they work can have important roles in this process by assisting families with limited health-literacy skills and bridging the communication divide.
Dr. Hironaka receives support for her fellowship training from the National Research Service Award, Training Grant No. 2 T32 HP10014-13 and the Maternal Child Health Bureau Training Grant No. T77MC00016.
Competing interests: None.
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