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Resources To Help You Care For Patients Who Don’t Read
by Susan Keane Baker

Written information is an important patient satisfier, for your patients who read. The 1992 Adult Literacy Survey reported that one in five Americans cannot read, and that an additional 27% of the population is marginally illiterate, in that they can sound out words but fail to understand their meaning. You may be caring for people who can’t read but you don’t realize it because they are skilled at hiding their handicap. One physician first recognized her patient’s problem when she gave the instructions with the text upside down and the patient pretended to read them.

Asking patients if they can read causes embarrassment for some, particularly if others are present. In some cases, family members, e.g., children, are unaware of the situation. Your patient may not trust anyone, even a clinician, with this information.

Patricia Elliott MD provided helpful clues for detecting illiteracy in a December 6, 1999 Medical Economics article titled, "Are you sure your patient can read?" She suggested taking extra time with patients who ask you to read or complete a form because they "forgot their glasses", patients who didn’t graduate from high school; patients who routinely hand a bill, directions, or a prescription over to a person accompanying them; patients having trouble finding or keeping a job; and patients who appear to be trying to memorize the information you are giving them. In addition, illiterate patients are less likely to keep appointments and to follow through on agreed-upon therapies.

How can you help patients who don’t read, or read poorly? Begin by using simple words. Give a layperson’s explanation for medical or biological terms. Repeat your explanations, and ask your patient to explain them back to you to. Asking your patient to demonstrate what you have taught, sometimes called a return demonstration, increases the likelihood that he will feel confident about following through successfully.

Use photographs, pictographs, video and audiotapes in conjunction with your explanation and Q & A exchange. There are examples of pictographs available at http://www.med.jhu.edu/cancerctr/ptfamsvc/pict/pictogr.htm.


The following resources will be helpful in learning more about adult literacy:

To locate literacy resources in your own community, visit the Literacy Volunteers of America website at: http://www.literacyvolunteers.org/home/. Your hospital’s health sciences librarian may also be an excellent source of information about internal hospital resources, as well as internet-based and other media programs on health literacy.

For help in creating information in easier-to-understand language, consult the Plain Language Action Network’s homepage at http://www.plainlanguage.gov/. This government sponsored web site offers information and tools for writing in plain language. It includes some "before and after" examples of letters, policies, and forms that would be interesting teaching tools for a task force working on simplifying your organization’s patient information, education and policy materials.

You can access ready-to-print patient education brochures in both English and Spanish at the FDA’s website: http://www.fda.gov/opacom/lowlit/7lowlit.html. Some are available only via the Internet, but you may print and duplicate them. Others are also available, in quantities up to 50, by writing to the FDA. For organizations wishing to print bulk copies of publications, a free CD-ROM is available.

Sample lessons, lesson plans and program designs are among the resources available at The 1999 Health and Literacy Compendium published by the World Education and the National Institute for Literacy. http://www.worlded.org/us/health/docs/comp/. The publication provides an annotated bibliography of print and Web-based materials on various health-related topics for use with limited-literacy adults.

For articles and tips that you can reprint in your own publications, visit www.healthliteracy.com. This is the website of health literacy expert, Helen Osborne, author of Overcoming Communication Barriers in Patient Education. The author’s permission must be obtained prior to reprinting.

Information on patient-driven needs assessment regarding health information can be found in an excellent report: Empowerment Health Education in Adult Literacy: A Guide for Public Health Education in Adult Literacy Practitioners, Policy Makers and Funders. Marcia Drew Hohn, Ed.D. a 1996- 1997 NIFL Literacy Leader Fellow, worked with a group of women at a literacy center to develop student-led approaches to improved health. The needs assessment included problem identification such as health information not connected with everyday life; fear of discrimination; no opportunity to ask questions; health educators who do not know their audience; over reliance on materials that are too difficult; lack of knowledge/experience with community health resources. http://www.nifl.gov/nifl/fellowship/reports/hohn/HOHN.HTM

A comprehensive collection of health literacy materials and resources is available at the Harvard School of Public Health’s website, http://www.hsph.harvard.edu/healthliteracy/. One practical tool available at the site, for example, is a dictionary of key words in plain language for communicating with patients, families and others about asthma.

The National Institute for Literacy website list provides an array of reports, current statistics, website links. This is an excellent resource for information on public awareness, research, legislation, literacy events, and the Literacy Leader Fellowship Program. Standards for adult literacy education are also provided. http://www.nifl.gov/nifl/publications.html

The National Library of Medicine’s Current Bibliographies in Medicine 2000-1 provides 479 citations regarding health literacy. For purposes of the bibliography, health literacy is defined as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." In compiling this bibliography a variety of government-sponsored and commercially available databases as well as the Internet were searched for material and more than 3500 citations were retrieved. The 479 references were then arranged into four broad subject categories: Background; Strategies in Health Literacy; Tactics; and Ideas. There is also a section on Internet Resources. Find the bibliography at: http://www.nlm.nih.gov/pubs/cbm/hliteracy.html#170.

Reprinted with permission of the author: Susan K. Baker - Speaker on Patient Satisfaction and Handling Patient Complaints

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