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.
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.
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