Health Literacy: Helping Older Adults and Their Families Understand Health Issues

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About 59% of older adults, and 36% of adults generally, have trouble reading and understanding written health-related materials that are moderately long.¹ Research indicates that people with low health literacy often experience poorer health outcomes than those with adequate health literacy.² They may have more difficulty understanding common medical terms and instructions, navigating the health care system, managing their health, understanding their condition and proposed treatments, and understanding how their lifestyle affects their health. People who misunderstand instructions for self-care or follow-up are at higher risk for complications and adverse events.³

Health literacy is an important issue in all populations. However, people who manage at least some of their own care or who need to navigate the health care system—such as short-stay patients, assisted- and independent-living residents, and home care clients—are at particular risk.

What Is Health Literacy?

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.”⁴ This definition, which was developed for the National Library of Medicine, has been used for Healthy People 2010 and Healthy People 2020.⁵

The Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine—formerly the Institute of Medicine—used the above definition in its 2004 report Health Literacy: A Prescription to End Confusion. The report further states that health literacy encompasses the following⁵: (1) conceptual and cultural knowledge; (2) oral literacy—listening/speaking skills; (3) print literacy—writing/reading skills; and (4) numeracy—the ability to understand and use numbers. Although organizations should consider all aspects of health literacy, most research has relied on measures of print literacy and numeracy.² Such research is important; reading ability is a greater predictor of health status than racial or ethnic group, education level, or income.⁶ To appreciate how a limited reading ability may affect understanding of written health information, consider the following example:

• Your naicisyhp has dednemmocer that you have a ypocsonoloc. Ypocsonoloc is a test for noloc recnac. It sevlovni gnitresni a elbixelf gniweiv epocs into your mutcer. You must drink a laiceps diuqil the thgin erofeb the noitanimaxe to naelc out your noloc.⁶ 

In this example, words that are long or that may be unfamiliar are spelled backward.

Because staff may have difficulty identifying people with low health literacy, and because even people with high health literacy may have difficulty understanding health information at times, many experts recommend taking universal precautions—in other words, making all written and oral information easy to understand. Although it was developed for primary care practices, other types of organizations can also use tools from Agency for Healthcare Research and Quality’s (AHRQ) Health Literacy Universal Precautions Toolkit to implement a universal precautions approach.⁷

Some worry that people with adequate literacy skills will be insulted by plain-language materials and ways of communicating. They may feel that such materials and communication methods are “dumbed down.” On the contrary, plain language and related strategies make information clearer and more accessible.⁸ In fact, research indicates that people of all literacy levels prefer and benefit from easily understood health materials.⁶

Develop Initiatives

In addition to preparing user-friendly materials and training staff, organizations and their partners should consider developing initiatives to improve health literacy. Interventions may target specific groups of residents or patients or broader populations (Box 1). 

Some health literacy interventions have been found to improve health outcomes. For example,  the AHRQ systematic review found that some intensive disease management programs reduced disease prevalence, disease severity, or both and that some self-management interventions increased self-management behavior. Health literacy interventions led to positive changes in participants’ use of health care services in all studies that examined the relationship. For example, interventions that involved intensive self-management and adherence reduced emergency department visits and hospitalizations.² 

Evidence regarding the characteristics of effective health literacy interventions is emerging. The AHRQ review included 21 studies that assessed the effectiveness of a single strategy and 21 studies that assessed the effectiveness of a group of strategies. Interventions that improved health outcomes or appropriate use of health services seemed to work by affecting mediating factors (eg, knowledge, self-efficacy) or by changing behavior. Characteristics of interventions that were effective in improving health outcomes included the following²:

• High intensity
• Basis in theory
• Use of pilot testing before full implementation
• Emphasis on skill building
• Delivery of the intervention by a health professional

Design features that appeared to improve comprehension in individuals with low health literacy in at least one study included the following²:

• Presentation of essential information by itself
• Presentation of essential information first
• Use of easy-to-read materials
• Use of illustrated narratives
• Addition of video to oral narratives
• Use of a higher number to represent better quality in presentations of quality information
• Use of the same denominators to present baseline risk and treatment benefit
• Addition of icon arrays (pictographs that use a series of dots, human figures, or faces to represent a proportion of a population) to numerical presentations of treatment benefit

Check for Understanding

A critical element of ensuring that people understand relevant health information is checking for understanding. One method of checking for understanding is the teach-back method. In this method, the staff member asks the individual to explain, in his or her own words, what he or she has been told or to demonstrate a skill (eg, use a device, take medications). For example, staff can say, “I want you to explain to me how you will take your medication, so I can be sure I have explained everything correctly.”⁶ During discharge of short-stay patients or education of residents or home care clients who manage their own medications, it is important to discuss how the individual plans to carry out self-care instructions and ask whether anything may prevent him or her from performing necessary tasks.

If the individual has trouble explaining the material or demonstrating the skill, the provider or staff member should take responsibility for the misunderstanding, not blame the person. The provider or staff member can then try to communicate the information more effectively and clearly. Several repetitions may be necessary. Using materials in other formats (eg, visual, video, interactive) or practicing the self-care tasks being discussed may help.

Staff may also notice signs that an individual generally has difficulty reading or understanding health information. For example, people who do the following may have low health literacy⁶:

• Fill out forms incompletely or inaccurately
• Say that they will read written material later
• Ask staff to read written information (eg, saying that they misplaced their glasses)
• Demonstrate an inability to name their medications, explain their indication, or properly describe how to take them
• Fail to comply with medication regimens
• Fail to experience a change in physiologic parameters even though they say they are taking the medications prescribed
• Fail to undergo recommended laboratory or imaging tests or complete referrals
• Regularly miss appointments

It is important to check for understanding even if the individual shows no signs of misunderstanding. As previously discussed, people may feign comprehension, or they may not realize that they misunderstand.

Conclusion

When residents, patients, or family members have trouble understanding health information, aging services organizations and their staff may share in the fallout. Examples of negative effects on the organization include adverse events, poor-quality care, inefficient use of health services, barriers to older adults’ independence or self-determination, and difficulty fulfilling the organization’s mission. A failure to reach a common understanding, even with the best intentions, can also have unintended consequences in mission-critical health care processes. For example, misunderstandings during informed consent and informed refusal can raise risks for persons served and providers. Fortunately, aging services can take many steps, such as the steps discussed here, to promote health literacy and the health of the people they serve. 

References

1. Kutner M, Greenberg E, Jin Y, Paulsen C, White S; for the National Centers for Education Statistics. The health literacy of America’s adults: results from the 2003 National Assessment of Adult Literacy. https://nces.ed.gov/pubs2006/2006483.pdf. Published September 2006. Accessed April 22, 2019.

2. Berkman ND, Sheridan SL, Donahue KE, et al. Health literacy interventions and outcomes: an updated systematic review. Evidence report/technology assessment number 199. AHRQ publication number 11-E006. Rockville, MD: Agency for Healthcare Research and Quality; 2011. 

3. Office of Disease Prevention and Health Promotion (ODPHP). US Department of Health and Human Services. Quick Guide to Health Literacy. https://health.gov/communication/literacy/quickguide/Quickguide.pdf. Accessed April 22, 2019.

4. Ratzan SC, Parker RM. Introduction. In: Selden CR, Zorn M, Ratzan SC, Ratzan SC, Parker RM. Current Bibliographies in Medicine 2000-1: Health Literacy. Bethesda, MD: National Library of Medicine; 2000. 

5. Institute of Medicine (IOM). Health Literacy: A Prescription to End Confusion. Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. Washington, DC: The National Academies Press; 2004. 

6. Weiss BD. Health literacy and patient safety: help patients understand. Manual for clinicians. 2nd ed. Chicago, IL: American Medical Association Foundation; 2007.

7. Agency for Healthcare Research and Quality. AHRZ Heath Literacy Universal Precautions Toolkit, 2nd edition. ahrq.gov website. https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/index.html. Published April 2010. Updated August 2018. Accessed April 22, 2019.

8. Mitty E, Flores S. Assisted living nursing practice: health literacy and chronic illness management. Geriatr Nurs. 2008;29(4):230-235. doi:10.1016/j.gerinurse.2008.06.007 

9. Agency for Healthcare Research and Quality. How to create a pill card. ahrq.gov website. https://www.ahrq.gov/patients-consumers/diagnosis-treatment/treatments/pillcard/index.html.
Published September 2012. Updated August 2018. Accessed April 22, 2019.