Geriatric Nursing
Volume 29, Issue 4 , Pages 230-235, July 2008

Assisted Living Nursing Practice: Health Literacy and Chronic Illness Management

Ethel Mitty and Sandi Flores

Article Outline

Functional illiteracy is an inability to read sufficient to function in society. In the high-tech, information-dependent environment of postindustrial society, being illiterate is being at risk. Health literacy is the ability to access, understand, and use basic information about health conditions and services that is necessary to make informed decisions. Older adults (≥65 years of age) have lower health literacy than all other age groups. Limited health literacy is associated with greater use of emergency department visits, increased rates of hospitalization, and failure to take important diagnostic tests. To maintain independence and self-determination, assisted living (AL) residents need to be able to understand a new or changed diagnosis, as well as oral and written instructions, especially with regard to their medication management. This article discusses health literacy, “plain language,” and assessment and interventions to maintain health literacy.

 

Health literacy is about understanding health information and then acting on it. Basic skills are reading, writing (to a lesser extent), and “numeracy.” To maintain independence and self-determination, AL residents, as well as all older adults, need to be able to understand written and oral information about their medical condition(s), follow written and oral treatment instructions and preparations for a diagnostic test, phrase and ask relevant questions, and manage problems that might arise in their treatment or medication regimen. Numeracy skills include calculating the time when a next dose is due and calculating the number of pills needed over the span of days until a medication has to be refilled.

It is reported that more than 40 million adults in the United States are functionally illiterate: unable to perform the reading tasks necessary to function in society. Another 40 million individuals have suboptimal reading skills.1 Almost half of all adults residing in the United States in 1992 were in the 2 lowest reading proficiency/literacy levels, rendering them at risk for being able to negotiate a high-tech, information-dependent society typified by the United States, Western Europe, and many Asian and Near Eastern nations.2 The number of grades completed in formal schooling is not a good indicator of reading ability or literacy; however, it has to be considered. Adults aged 65 years and older have lower health literacy than all other age groups,3 and the research indicates that health literacy decreases with age.

This article defines health literacy, the neurological components of health literacy, the notion of “plain language,” and the things you can do for assisted living residents regarding their health maintenance associated with their health literacy.

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Health Literacy Defined 

The word illiterate means the inability to read or write. Limited or low literacy does not mean that an individual is illiterate. Health literacy is the capacity to access, understand, and use basic information about health conditions and health care services that is needed to make informed and appropriate health care decisions.4 The ability to engage in this process depends on knowledge of health topics and the communication skills of both the health care professional and the individual. For the patient, it means making sense of health care jargon and abbreviations (e.g., what is a cat scan?). For the health care professional, it requires sensitivity to cultural norms that can influence willingness and the ability to communicate personal information, assume responsibility for self-care, or make treatment decisions. The “situational press” or context in which information is being communicated can also affect understanding as well as one's having the confidence—that is, presence of mind—to ask questions.

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Issues in Health Literacy 

Low literacy is a significant barrier to obtaining preventive care as well as timely and appropriate treatment. The data suggest that individuals with limited literacy skills are more likely to use emergency rooms and other costly services (e.g., ambulance transport), have a higher rate of hospitalization,5 neglect important tests such as Pap smears, fail to obtain an annual flu shot, are less knowledgeable about or able to manage their chronic medical illnesses (such as diabetes mellitus and hypertension), and present themselves for treatment in a more serious state of illness compared with those with higher literacy.6 Today Internet-based health information is widespread and better written than when this source first appeared, but there is no rating system regarding the quality and veracity of this information. For many older adults, the Internet route to obtain information is daunting. It also lacks an immediate interface by which the person can ask questions and have them answered.

Interestingly, patients with low health literacy are more likely to describe their health status as “poor” compared with patients with sufficient health literacy.7 Individuals with low health literacy use more health services to treat their illness than to prevent complications associated with their illness.6 The sense of shame among individuals with limited health literacy8 has particular implications for community- and AL-dwelling older adults who want to maintain their self-respect and decisional autonomy. Clear understanding of a new diagnosis can be impeded by hearing impairment, embarrassment about asking for clarification, unfamiliar medical terminology, and an overwhelming sense of inadequacy to master the technology needed to manage their medical condition, such as a glucometer, nebulizer, or c-pap.

Many older adults with low functional literacy have never told anyone of their reading difficulty. What would impel them to divulge their secret in an AL residence or to an AL nurse? Health information for those with limited English-language proficiency (ELP) should be provided in the person's primary language, using culture-relevant words, symbols, and examples. Using a medically trained interpreter does not absolve the health care professional of responsibility for the accuracy and completeness of the information. Interpreters are not simply word-for-word translators. They “interpret” the message; they mediate between the health care provider and the patient; they make judgments about what it is acceptable to voice and what cannot be uttered; they determine whether nuance or example has to be added to the information. These actions need to be made known to the health care professional to provide some measure of assurance about the accuracy of what has been communicated to the resident (i.e., patient).

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Executive Control Function, Health Literacy, and Assisted Living Residents 

The notion of executive control function (ECF), a frontal lobe activity, is complex and has many components and contributors. Sufficient evidence links ECF and autonomy—a key principle and goal of AL. Essentially, ECF is the capacity to engage effectively in independent, goal-driven behavior that includes selection, organization, sequencing, and monitoring.9 Normal age-related changes in “working memory”—reduced processing speed, an increased tendency to be distracted, and a reduced ability to process and remember information at the same time—will affect ECF and health literacy. These changes are not indicative of or diagnostic for cognitive impairment (or oncoming dementia) but can, nevertheless, impair understanding and recall of health or other information. Depression, medications, Parkinson's disease, diabetes mellitus, fatigue, stress, and vision and hearing impairment can also affect ECF, and hence health literacy.

Of particular importance for AL is the finding that older adults with impaired ECF may be unable to manage their medications. There is a dearth of research on the relationship of ECF and health literacy. There is no gold standard or single assessment tool to evaluate ECF. The CLOX test of ECF is psychometrically sound and requires minimal training and only a few minutes to administer.9 CLOX 1 is a freehand drawing of a clock directed to be set at 10 past 11. It strongly correlates with severity of cognitive incapacity. CLOX 2 is a general measure of cognition and has good correlation with the Mini-Mental State Examination. Scoring is simple and descriptive. Assessment using the CLOX instrument can guide the content of health education as well as decisions made with the resident and his or her family about medication assistance or administration needs.

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Testing and Assessing Health Literacy 

Identification of low literacy has to be tempered by sensitivity to the way(s) a person makes himself or herself known to the world. These behaviors have cultural rules and significant psychosocial connotations. An individual might be considered “high risk” for limited health care (or other) literacy if he or she did not complete a high school education (i.e., grade 12), is a member of a minority group and speaks English as a second language, or is an older adult who might not have had the opportunity to learn to speak English.

When talking with your residents, ask whether they know the name of their medication or what each pill is used for. Does this resident frequently miss appointments? Does the resident explain the missed appointment or medication mishap by saying, “I forgot my glasses.” It might be helpful to initiate the discussion where you are trying to ascertain the resident's health literacy—for his or her own safety—by saying to the resident, “Lots of people have trouble reading what the physician wrote down. Does this happen to you?”

Individuals with less than 8 or fewer years of school are likely to be burdened by inadequate health literacy.1 Given the significant number of immigrant older adults and the fact that many of the indigenous U.S. population of those 65 and older might not have completed more than 12 years of education in the United States, it would appear to be necessary and in the resident's best interests (i.e., safety) to assess his or her health literacy.

The Test of Functional Health Literacy in Adults (TOFHLA) found that 15% of adults tested were unable to read or understand the directions on a prescription bottle, and slightly more than one-third did not understand instructions on how to take the medication (e.g., on an empty stomach).10 Another instrument, the Rapid Estimate of Adult Literacy in Medicine (REALM) uses only health-related terms, is unavailable in Spanish (as is the TOFHLA), and fails to test numeracy or “quantitative literacy,” which is held by some to be the most important functional health literacy ability.10 The S(short)-TOFHLA has acceptable psychometrics (i.e., reliability and validity), takes only 10 minutes to administer and is available in Spanish.

Among the numeracy items in the S-TOFHLA are those that ask individuals to figure out when to take their next dose of a medication first given at 7:00 a.m. and due 6 hours later, when to take medication on an empty stomach, understanding of their blood sugar level, the date of their next follow-up appointment, and when to take a 2–3 hour p.c. medication. A comprehension question focuses on instructions for a diagnostic test, what they can eat, when they have to start being without food, and so on.

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Plain Language 

Plain language does not mean “dumbing down.” Rather, it means increasing accessibility of information to an intended user. The absence of plain language guidelines is associated with health care disparities, errors of omission and commission in care delivery, chronic illness management, and failure to engage in healthy lifestyles (associated with overweight and obesity).2 In fact, the need and impetus for “plain language” was asserted by a 1998 presidential memorandum to several federal agencies, including the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC).

Reading level proficiency is typically set at 6th grade and no higher than 8th grade for many surveys, questionnaires, and interviews. Typically, reading level is estimated by the number of syllables in a word, how often such polysyllabic words are used in a sentence, and the total number of words in a sentence. The notion of plain language is that written or verbal information should be understandable on first hearing or reading.2 Resistance to plain language holds that plain language is insulting to those with proficient or advanced reading skills; important scientific or technical details are eliminated in plain-language documents and instructions (e.g., colonoscopy prep); and plain language writing and reading is dull. It is argued that use of plain language in a directive (e.g., preparing for colonoscopy) downplays risk and, in fact, increases risk for lawsuits. There is no question, however, that the high level of reading proficiency required for most legal contracts (as well as for informed consent documents) inclines toward confusion rather than clarity.

Plain language can be applied to signage, dietary instructions, medication regimens, and the like. The important points should come first and be broken into small bits of information using simple words and brief statement or sentences. Polysyllabic words should be avoided, as should sentences with streams of phrases separated by semicolons. Highly technical terms and jargon should not be used unless absolutely necessary, and, if needed, they should be explained as simply as possible.

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Assessing and Improving the Assisted Living Health Literacy Environment 

Assay the health literacy of the AL residence with regard to its “navigation” and communication props and cues. The Health Literacy Environment Review rates the telephone response/answering system as well as entrance and lobby signage on a 3-scale valuation: 1) the issue is not addressed or not done, 2) the issue is addressed but needs improvement, and 3) the issue is well addressed.11 For example, does the telephone answering system provide an option to get information in a language other than English? Are there maps available in strategic locations? Are multilingual staff available? Is signage posted in languages other than English with attention to the local population? Is the same wordage used consistently (e.g., restrooms)?

Assessment of the quality of information for residents examines the use of everyday words, the relevance of diagrams and illustrations, font size (12 point or greater) and color contrast of print material, and the depiction of people and activities that are genuinely representative of the population cared for in the AL facility and its caregivers.

Following are considerations for writing or constructing a document or program to deliver health information:

•Consider the intended user of the information (e.g., the resident? Nurse's assistant? Spouse/family member?).

•Consider the culture and gender of the resident and the intended user (this may not be the same person) and the cultural tradition of sharing personal information.

•Limit the number of major points you want to make to no more than 4 (i.e., a general rule).

•Clearly state the action or behavior you want the “patient” to engage in and the actions that are not recommended.

•Pictograms or line drawings can be useful, but avoid distracting drawings that add nothing to the message.

•Use at least a 12-point font; it may have to be 16- or 18-point if the intended users are visually impaired.

•Avoid fancy script, italics, and the use of all capital letters.

•Avoid dense text; use headings and bullets; leave at least 1 inch of blank space between text segments.

•Be cautious about succumbing to “verbal diarrhea.” As the folks on Dragnet said, “Just the facts, ma'am.” Keep in mind the purpose of the information document or presentation.

•Do not mix positive and negative information, that is do's and do not's.

The ability of most older adults, let alone those with limited literacy, to use the Internet to access health sites for the information they seek is not known. Web text is reportedly written at a 10th-grade reading level or higher, rendering the ability to surf or scroll the Internet even more burdensome.2 Plain language is described as a “strategic response” to the challenge of low health care literacy.

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Listening and Teaching Skills 

Avoid asking a question that is answered “yes” or “no”; this effectively cuts off conversation and communication. For example, “Do you have any questions?” “Is there anything you did not understand?” No one wants to be thought of as stupid or as not comprehending; the natural inclination in responding to these types of questions is to say “no” (implying one has understood everything and has no questions). Rather, ask questions that begin with “what,” or “how,” or “tell me.”

“Rephrasing” or the “teach-back” method is a highly effective technique to check and reassure that information has been received and is understood).12 Rephrasing is used to obtain and verify informed consent for treatment. Very simply, the person to whom information has been given (in small bits) is asked to state (rephrase) in his or her own words what was just said. (“Tell me what I just said, in your own words”). The rephrasing does not have to include the exact medical or behavioral language; similar words are acceptable and should be encouraged. After each bit of information is given—in a few simple sentences—the process is repeated until there is reasonable evidence that all the information has been understood and has been remembered. This technique is a test both of recall and of understanding and is usable for persons with mild to moderate dementia, as well as those who have full cognition.

The check for understanding acknowledges that the sender/teacher may have omitted something important. It is also respectful of the receiver in acknowledging that information communicated in one session may have failed to stress what is important versus what is merely frill.12 The sender begins with, “I know I just gave you a lot of information. I want to be sure that I didn't leave anything out that you need to know.” [pause] “Tell me your understanding of what you feel you need to do to safely do [take your medication, etc.].”

The Nurse's Role 

There are no quick steps or solutions to problems regarding health literacy and older adults' willingness to share their challenges or limitations in understanding health information. Nurses play a key role in explaining (revised) service plan interventions to the resident, as well as to family members who might also be language challenged. In addition to asking nonthreatening questions phrased as “Tell me what you understand about your medication [treatment, etc.],” reinforce and repeat essential information often and at a language level commensurate with the resident's likely understanding (that you will test by saying, “Tell me what I just said to you in your own words”). In addition to assisting the resident's understanding of how his or her disease or condition will be managed, it is extremely important that direct care staff members are sensitive to the resident's needs and the rationale for the care/service plan and that they know how to tailor what they say to fit the resident's ability to understand, as a function of language.

Rewrite or provide information at a sixty-grade level of comprehension. This means avoiding poly- or multisyllabic words; use short sentences. Link the information you are providing to the resident's previous knowledge—for example, a similar medication or treatment or someone they knew who had the same illness. Reinforce and repeat the information often and in a shame-free environment. Avoid saying things such as, “I told you this a few days ago.” Consider placing the blame on yourself by saying something like, “I tried to explain this to you a few days ago, but I do not think I was successful. Let me try again.”

Think of your frustration and embarrassment trying to communicate in a foreign language, a language in which you know few words and limited understanding. Imagine yourself asking where the bus stop is (i.e., what does the resident know?), where the bus is for a destination that you desperately want to get to (i.e., what does the resident want to know?), how much does the trip cost (i.e., what are the barriers to the resident's understanding?), and when does the bus return (i.e., how will I and the resident know that we have achieved understanding?).

Enjoy the trip. Learning about your residents' health care literacy is liberating because it finally unlocks the barriers; the rewards are huge.

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Resources 

Plain Language Action and Information Network. www.plainlanguage.gov.

Making Your Web Site Senior Friendly. Checklist published by the National Institute on Aging and the National Library of Medicine: www.nlm.nih.gov/pubs/checklist.pdf.

Making Text Legible. Designing for people with partial sight. www.lighthouse.org/accessibility/legible.

Communicating with Your Hard-of-Hearing Patient. http://depts.washington.edu/pfes/pdf/DeafCultureClue4_07.pdf.

Literacy Assistance Center. www.lacnyc.org.

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References 

  1. Baker DW, Williams MV, Parker RM, et al. Development of a brief test to measure functional health literacy. Patient Educ Counsel. 1999;38:33–42
  2. Stableford S, Mettger W. Plain language: a strategic response to the health literacy challenge. J Public Health Policy. 2007;28:71–93
  3. Kutner M, Greenberg E, Jin Y, et al. The Health Literacy of America's Adults: results from the 2003 National Assessment of Adult Literacy (NCES-483) (U.S. Department of Education). Washington DC: National Center for Education Statistics; 2006;
  4. Healthy People 2010. Washington DC: US Department of Health and Human Services.
  5. Institute of Medicine. Health Literacy (A prescription to end confusion). Washington DC: National Academies Press; 2004;
  6. Health Literacy and Health Outcomes. www.health.gov/communication/literacy/quickguide/factsliteracy.htmCited Feb. 18, 2008
  7. Baker DW, Parker RM, Williams MV, et al. The relationship of patient reading ability to self-reported health and use of health services. Am J Public Health. 1997;87:1027–1030
  8. Parikh NS, Parker RM, Nurss JM, et al. Shame and health literacy: the unspoken connection. Patient Educ Counsel. 1996;27:33–39
  9. Barrington L, Yoder-Wise PS. Executive control function: a clinically practical assessment. J Gerontol Nurs. 2006;32:28–34
  10. Parker RM, Baker DW, Williams MV, et al. The test of functional health literacy in adults: a new instrument for measuring patients' literacy skills. J Gen Int Med. 1995;10:537–541
  11. Rudd RE, Anderson JE. The health literacy environment of hospitals and health centers. Boston MA: National Center for the Study of Adult Learning and Literacy www.ncsall.netCited April 21, 2008
  12. Doak C, Doak L, Root J. Teaching patients with low literacy skills. 2nd ed. Philadelphia: JB Lippincott.

ETHEL MITTY, EdD, RN, College of Nursing and Hartford Institute for Geriatric Nursing, New York University, New York, NY.

SANDI FLORES, RN, C, Executive Director, American Assisted Living Nurses Association, Education Director, Community Education LLC, San Marcos, CA.

PII: S0197-4572(08)00198-5

doi:10.1016/j.gerinurse.2008.06.007

Geriatric Nursing
Volume 29, Issue 4 , Pages 230-235, July 2008

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