COLUMNASSISTED LIVING

Ethel Mitty EdD, R

instructions and preparations for a diagnosti

Geriatric Nursin230

Ethel Mitty and Sandi Flores

ASSISTED LIVING NURSING PRACTICE: HEALTHLITERACY AND CHRONIC ILLNESS MANAGEMENT

Ethel Mitty Sandi Flores

N , Sandi Flores, RN, C

Functional illiteracy is an inability to read suf-ficient to function in society. In the high-tech,information-dependent environment of post-industrial society, being illiterate is being atrisk. Health literacy is the ability to access, un-derstand, and use basic information abouthealth conditions and services that is neces-sary to make informed decisions. Older adults(�65 years of age) have lower health literacythan all other age groups. Limited health liter-acy is associated with greater use of emer-gency department visits, increased rates ofhospitalization, and failure to take importantdiagnostic tests. To maintain independenceand self-determination, assisted living (AL)residents need to be able to understand a newor changed diagnosis, as well as oral and writ-ten instructions, especially with regard to theirmedication management. This article dis-cusses health literacy, “plain language,” andassessment and interventions to maintainhealth literacy. (Geriatr Nurs 2008;29:230-235)

Health literacy is about understanding healthinformation and then acting on it. Basic skillsare reading, writing (to a lesser extent), and“numeracy.” To maintain independence andself-determination, AL residents, as well as allolder adults, need to be able to understand writ-ten and oral information about their medicalcondition(s), follow written and oral treatment

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test, phrase and ask relevant questions, andmanage problems that might arise in their treat-ment or medication regimen. Numeracy skillsinclude calculating the time when a next dose isdue and calculating the number of pills neededover the span of days until a medication has tobe refilled.

It is reported that more than 40 million adultsin the United States are functionally illiterate:unable to perform the reading tasks necessaryto function in society. Another 40 million indi-viduals have suboptimal reading skills.1 Almosthalf of all adults residing in the United States in1992 were in the 2 lowest reading proficiency/literacy levels, rendering them at risk for beingable to negotiate a high-tech, information-de-pendent society typified by the United States,Western Europe, and many Asian and NearEastern nations.2 The number of grades com-pleted in formal schooling is not a good indica-tor of reading ability or literacy; however, it hasto be considered. Adults aged 65 years and olderhave lower health literacy than all other agegroups,3 and the research indicates that healthliteracy decreases with age.

This article defines health literacy, the neuro-logical components of health literacy, the notionof “plain language,” and the things you can dofor assisted living residents regarding theirhealth maintenance associated with their health

literacy.

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Health Literacy Defined

The word illiterate means the inability to reador write. Limited or low literacy does not meanthat an individual is illiterate. Health literacy isthe capacity to access, understand, and use ba-sic information about health conditions andhealth care services that is needed to makeinformed and appropriate health care deci-sions.4 The ability to engage in this processdepends on knowledge of health topics and thecommunication skills of both the health careprofessional and the individual. For the patient,it means making sense of health care jargon andabbreviations (e.g., what is a cat scan?). For thehealth care professional, it requires sensitivityto cultural norms that can influence willingnessand the ability to communicate personal informa-tion, assume responsibility for self-care, or maketreatment decisions. The “situational press” orcontext in which information is being communi-cated can also affect understanding as well asone’s having the confidence—that is, presence ofmind—to ask questions.

Issues in Health Literacy

Low literacy is a significant barrier to obtain-ing preventive care as well as timely and appro-priate treatment. The data suggest that individ-uals with limited literacy skills are more likelyto use emergency rooms and other costly ser-vices (e.g., ambulance transport), have a higherrate of hospitalization,5 neglect important testssuch as Pap smears, fail to obtain an annual flushot, are less knowledgeable about or able tomanage their chronic medical illnesses (such asdiabetes mellitus and hypertension), and presentthemselves for treatment in a more serious stateof illness compared with those with higher lit-eracy.6 Today Internet-based health informationis widespread and better written than when thissource first appeared, but there is no ratingsystem regarding the quality and veracity of thisinformation. For many older adults, the Internetroute to obtain information is daunting. It alsolacks an immediate interface by which the per-son can ask questions and have them answered.

Interestingly, patients with low health literacyare more likely to describe their health status as“poor” compared with patients with sufficienthealth literacy.7 Individuals with low health lit-

eracy use more health services to treat their

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illness than to prevent complications associatedwith their illness.6 The sense of shame amongindividuals with limited health literacy8 has par-ticular implications for community- and AL-dwelling older adults who want to maintaintheir self-respect and decisional autonomy.Clear understanding of a new diagnosis can beimpeded by hearing impairment, embarrass-ment about asking for clarification, unfamiliarmedical terminology, and an overwhelmingsense of inadequacy to master the technologyneeded to manage their medical condition, suchas a glucometer, nebulizer, or c-pap.

Many older adults with low functional literacyhave never told anyone of their reading diffi-culty. What would impel them to divulge theirsecret in an AL residence or to an AL nurse?Health information for those with limited En-glish-language proficiency (ELP) should be pro-vided in the person’s primary language, usingculture-relevant words, symbols, and examples.Using a medically trained interpreter does notabsolve the health care professional of respon-sibility for the accuracy and completeness of theinformation. Interpreters are not simply word-for-word translators. They “interpret” the mes-sage; they mediate between the health care pro-vider and the patient; they make judgmentsabout what it is acceptable to voice and whatcannot be uttered; they determine whether nu-ance or example has to be added to the infor-mation. These actions need to be made knownto the health care professional to provide somemeasure of assurance about the accuracy ofwhat has been communicated to the resident(i.e., patient).

Executive Control Function, HealthLiteracy, and Assisted Living Residents

The notion of executive control function (ECF),a frontal lobe activity, is complex and has manycomponents and contributors. Sufficient evidencelinks ECF and autonomy—a key principle andgoal of AL. Essentially, ECF is the capacity toengage effectively in independent, goal-driven be-havior that includes selection, organization, se-quencing, and monitoring.9 Normal age-relatedchanges in “working memory”—reduced process-ing speed, an increased tendency to be distracted,and a reduced ability to process and remember

information at the same time—will affect ECF and

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health literacy. These changes are not indicative ofor diagnostic for cognitive impairment (or oncom-ing dementia) but can, nevertheless, impair under-standing and recall of health or other information.Depression, medications, Parkinson’s disease, di-abetes mellitus, fatigue, stress, and vision andhearing impairment can also affect ECF, andhence health literacy.

Of particular importance for AL is the findingthat older adults with impaired ECF may beunable to manage their medications. There is adearth of research on the relationship of ECFand health literacy. There is no gold standard orsingle assessment tool to evaluate ECF. TheCLOX test of ECF is psychometrically soundand requires minimal training and only a fewminutes to administer.9 CLOX 1 is a freehanddrawing of a clock directed to be set at 10 past11. It strongly correlates with severity of cogni-tive incapacity. CLOX 2 is a general measure ofcognition and has good correlation with theMini-Mental State Examination. Scoring is sim-ple and descriptive. Assessment using the CLOXinstrument can guide the content of health ed-ucation as well as decisions made with the res-ident and his or her family about medicationassistance or administration needs.

Testing and Assessing Health Literacy

Identification of low literacy has to be tem-pered by sensitivity to the way(s) a personmakes himself or herself known to the world.These behaviors have cultural rules and signifi-cant psychosocial connotations. An individualmight be considered “high risk” for limitedhealth care (or other) literacy if he or she didnot complete a high school education (i.e.,grade 12), is a member of a minority group andspeaks English as a second language, or is anolder adult who might not have had the oppor-tunity to learn to speak English.

When talking with your residents, ask whetherthey know the name of their medication or whateach pill is used for. Does this resident frequentlymiss appointments? Does the resident explain themissed appointment or medication mishap by say-ing, “I forgot my glasses.” It might be helpful toinitiate the discussion where you are trying toascertain the resident’s health literacy—for his or

her own safety—by saying to the resident, “Lots of

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people have trouble reading what the physicianwrote down. Does this happen to you?”

Individuals with less than 8 or fewer years ofschool are likely to be burdened by inadequatehealth literacy.1 Given the significant number ofimmigrant older adults and the fact that many ofthe indigenous U.S. population of those 65 andolder might not have completed more than 12years of education in the United States, it wouldappear to be necessary and in the resident’s bestinterests (i.e., safety) to assess his or her healthliteracy.

The Test of Functional Health Literacy inAdults (TOFHLA) found that 15% of adultstested were unable to read or understand thedirections on a prescription bottle, and slightlymore than one-third did not understand instruc-tions on how to take the medication (e.g., on anempty stomach).10 Another instrument, theRapid Estimate of Adult Literacy in Medicine(REALM) uses only health-related terms, is un-available in Spanish (as is the TOFHLA), andfails to test numeracy or “quantitative literacy,”which is held by some to be the most importantfunctional health literacy ability.10 The S(short)-TOFHLA has acceptable psychometrics (i.e., re-liability and validity), takes only 10 minutes toadminister and is available in Spanish.

Among the numeracy items in the S-TOFHLAare those that ask individuals to figure out whento take their next dose of a medication firstgiven at 7:00 a.m. and due 6 hours later, when totake medication on an empty stomach, under-standing of their blood sugar level, the date oftheir next follow-up appointment, and when totake a 2–3 hour p.c. medication. A comprehen-sion question focuses on instructions for a diag-nostic test, what they can eat, when they have tostart being without food, and so on.

Plain Language

Plain language does not mean “dumbing down.”Rather, it means increasing accessibility of infor-mation to an intended user. The absence of plainlanguage guidelines is associated with health caredisparities, errors of omission and commission incare delivery, chronic illness management, andfailure to engage in healthy lifestyles (associatedwith overweight and obesity).2 In fact, the needand impetus for “plain language” was asserted by

a 1998 presidential memorandum to several fed-

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eral agencies, including the National Institutes ofHealth (NIH) and the Centers for Disease Controland Prevention (CDC).

Reading level proficiency is typically set at 6thgrade and no higher than 8th grade for manysurveys, questionnaires, and interviews. Typi-cally, reading level is estimated by the numberof syllables in a word, how often such polysyl-labic words are used in a sentence, and the totalnumber of words in a sentence. The notion ofplain language is that written or verbal informa-tion should be understandable on first hearingor reading.2 Resistance to plain language holdsthat plain language is insulting to those with pro-ficient or advanced reading skills; important sci-entific or technical details are eliminated in plain-language documents and instructions (e.g.,colonoscopy prep); and plain language writingand reading is dull. It is argued that use of plainlanguage in a directive (e.g., preparing for colonos-copy) downplays risk and, in fact, increases riskfor lawsuits. There is no question, however, thatthe high level of reading proficiency required formost legal contracts (as well as for informed con-sent documents) inclines toward confusion ratherthan clarity.

Plain language can be applied to signage, di-etary instructions, medication regimens, and thelike. The important points should come first andbe broken into small bits of information usingsimple words and brief statement or sentences.Polysyllabic words should be avoided, as shouldsentences with streams of phrases separated bysemicolons. Highly technical terms and jargonshould not be used unless absolutely necessary,and, if needed, they should be explained as sim-ply as possible.

Assessing and Improving the AssistedLiving Health Literacy Environment

Assay the health literacy of the AL residencewith regard to its “navigation” and communica-tion props and cues. The Health Literacy Envi-ronment Review rates the telephone response/answering system as well as entrance and lobbysignage on a 3-scale valuation: 1) the issue is notaddressed or not done, 2) the issue is addressedbut needs improvement, and 3) the issue is welladdressed.11 For example, does the telephoneanswering system provide an option to get in-

formation in a language other than English? Are

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there maps available in strategic locations? Aremultilingual staff available? Is signage posted inlanguages other than English with attention tothe local population? Is the same wordage usedconsistently (e.g., restrooms)?

Assessment of the quality of information forresidents examines the use of everyday words,the relevance of diagrams and illustrations, fontsize (12 point or greater) and color contrast ofprint material, and the depiction of people andactivities that are genuinely representative ofthe population cared for in the AL facility and itscaregivers.

Following are considerations for writing orconstructing a document or program to deliverhealth information:● Consider the intended user of the informa-

tion (e.g., the resident? Nurse’s assistant?Spouse/family member?).

● Consider the culture and gender of the resi-dent and the intended user (this may not bethe same person) and the cultural traditionof sharing personal information.

● Limit the number of major points you wantto make to no more than 4 (i.e., a generalrule).

● Clearly state the action or behavior you wantthe “patient” to engage in and the actionsthat are not recommended.

● Pictograms or line drawings can be useful,but avoid distracting drawings that add noth-ing to the message.

● Use at least a 12-point font; it may have to be16- or 18-point if the intended users are vi-sually impaired.

● Avoid fancy script, italics, and the use of allcapital letters.

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

● Be cautious about succumbing to “verbal di-arrhea.” As the folks on Dragnet said, “Justthe facts, ma’am.” Keep in mind the purposeof the information document or presenta-tion.

● Do not mix positive and negative informa-tion, that is do’s and do not’s.

The ability of most older adults, let alonethose with limited literacy, to use the Internet toaccess health sites for the information they seekis not known. Web text is reportedly written at

a 10th-grade reading level or higher, rendering

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the ability to surf or scroll the Internet evenmore burdensome.2 Plain language is describedas a “strategic response” to the challenge of lowhealth care literacy.

Listening and Teaching Skills

Avoid asking a question that is answered“yes” or “no”; this effectively cuts off conversa-tion and communication. For example, “Do youhave any questions?” “Is there anything you didnot understand?” No one wants to be thought ofas stupid or as not comprehending; the naturalinclination in responding to these types of ques-tions is to say “no” (implying one has under-stood everything and has no questions). Rather,ask questions that begin with “what,” or “how,”or “tell me.”

“Rephrasing” or the “teach-back” method is ahighly effective technique to check and reassurethat information has been received and is un-derstood).12 Rephrasing is used to obtain andverify informed consent for treatment. Very sim-ply, the person to whom information has beengiven (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 theexact medical or behavioral language; similarwords are acceptable and should be encour-aged. After each bit of information is given—ina few simple sentences—the process is repeateduntil there is reasonable evidence that all theinformation has been understood and has beenremembered. This technique is a test both ofrecall and of understanding and is usable forpersons with mild to moderate dementia, aswell as those who have full cognition.

The check for understanding acknowledgesthat the sender/teacher may have omitted some-thing important. It is also respectful of the re-ceiver in acknowledging that information com-municated in one session may have failed tostress what is important versus what is merelyfrill.12 The sender begins with, “I know I justgave you a lot of information. I want to be surethat I didn’t leave anything out that you need toknow.” [pause] “Tell me your understanding ofwhat you feel you need to do to safely do [take

your medication, etc.].”

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The Nurse’s Role

There are no quick steps or solutions to prob-lems regarding health literacy and older adults’willingness to share their challenges or limita-tions in understanding health information.Nurses play a key role in explaining (revised)service plan interventions to the resident, aswell as to family members who might also belanguage challenged. In addition to asking non-threatening questions phrased as “Tell me whatyou understand about your medication [treat-ment, etc.],” reinforce and repeat essential infor-mation often and at a language level commensu-rate with the resident’s likely understanding (thatyou will test by saying, “Tell me what I just said toyou in your own words”). In addition to assistingthe resident’s understanding of how his or herdisease or condition will be managed, it is ex-tremely important that direct care staff mem-bers are sensitive to the resident’s needs and therationale for the care/service plan and that theyknow how to tailor what they say to fit theresident’s ability to understand, as a function oflanguage.

Rewrite or provide information at a sixty-gradelevel of comprehension. This means avoidingpoly- or multisyllabic words; use short sen-tences. Link the information you are providingto the resident’s previous knowledge—for ex-ample, a similar medication or treatment orsomeone they knew who had the same illness.Reinforce and repeat the information often andin a shame-free environment. Avoid sayingthings such as, “I told you this a few days ago.”Consider placing the blame on yourself by say-ing something like, “I tried to explain this to youa few days ago, but I do not think I was success-ful. Let me try again.”

Think of your frustration and embarrass-ment trying to communicate in a foreign lan-guage, a language in which you know fewwords and limited understanding. Imagineyourself asking where the bus stop is (i.e.,what does the resident know?), where the busis for a destination that you desperately wantto get to (i.e., what does the resident want toknow?), how much does the trip cost (i.e.,what are the barriers to the resident’s under-standing?), and when does the bus return (i.e.,how will I and the resident know that we have

achieved understanding?).

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Enjoy the trip. Learning about your residents’health care literacy is liberating because it fi-nally unlocks the barriers; the rewards are huge.

Resources

Plain Language Action and Information

Network. www.plainlanguage.gov.

Making Your Web Site Senior Friendly.

Checklist published by the National Institute onAging and the National Library of Medicine:www.nlm.nih.gov/pubs/checklist.pdf.

Making Text Legible. Designing for peoplewith partial sight. www.lighthouse.org/accessibility/

legible.

Communicating with Your Hard-of-Hear-

ing Patient. http://depts.washington.edu/pfes/

pdf/DeafCultureClue4_07.pdf.

Literacy Assistance Center. www.lacnyc.

org.

References

1. Baker DW, Williams MV, Parker RM, et al.Development of a brief test to measure functionalhealth literacy. Patient Educ Counsel 1999;38:33-42.

2. Stableford S, Mettger W. Plain language: a strategicresponse to the health literacy challenge. J PublicHealth Policy 2007;28:71-93.

3. Kutner M, Greenberg E, Jin Y, et al. The HealthLiteracy of America’s Adults: results from the 2003National Assessment of Adult Literacy (NCES-483).U.S. Department of Education. Washington DC:

National Center for Education Statistics; 2006.

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4. Healthy People 2010. Washington DC: US Departmentof Health and Human Services.

5. Institute of Medicine. Health Literacy. A prescriptionto end confusion. Washington DC: National AcademiesPress; 2004.

6. Health Literacy and Health Outcomes. Available atwww.health.gov/communication/literacy/quickguide/

factsliteracy.htm. Cited Feb. 18, 2008.7. Baker DW, Parker RM, Williams MV, et al. The

relationship of patient reading ability to self-reportedhealth and use of health services. Am J Public Health1997;87:1027-30.

8. Parikh NS, Parker RM, Nurss JM, et al. Shame andhealth literacy: the unspoken connection. Patient EducCounsel 1996;27:33-9.

9. Barrington L, Yoder-Wise PS. Executive controlfunction: a clinically practical assessment. J GerontolNurs 2006;32:28-34.

10. Parker RM, Baker DW, Williams MV, et al. The test offunctional health literacy in adults: a new instrumentfor measuring patients’ literacy skills. J Gen Int Med1995;10:537-41.

11. Rudd RE, Anderson JE. The health literacyenvironment of hospitals and health centers. BostonMA: National Center for the Study of Adult Learningand Literacy. Available at www.ncsall.net. Cited April21, 2008.

12. Doak C, Doak L, Root J. Teaching patients with lowliteracy 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.

0197-4572/08/$ - see front matter

© 2008 Mosby, Inc. All rights reserved.

doi:10.1016/j.gerinurse.2008.06.007

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