Center for Health Literacy Promotion Blog
May 15, the TimesRecordNews of Wichita Falls, TX posted this headline: US pays billions, and lives, for poor
health literacy. This morning it
showed up on the Google Health Literacy Alert.
story features the following as an example of how low literacy in a medical
setting (which the writer incorrectly equates to health literacy) is costing us
A 5-month-old child
asphyxiated when a cap from a pre-filled syringe was ejected into his throat
during the administration of medicine. The father had taken his son to an
emergency room and was sent home with instructions to give his son medication
through a new syringe every few hours. The young father assumed the cap to be
part of the syringe, and it looked attached to the medicine vial. While placing
the medication into the child’s mouth, the cap came off and lodged in the
baby’s airway. The baby was rushed to the hospital but died. Was he a bad
parent? No, it was a tragic mistake, the result of low health literacy.
The father and his literacy
is not the problem here.
As the writer points out,
proper use of the syringe was not demonstrated. This father demonstrated health
literacy by recognizing an emergency and appropriately bringing his child for
The providers failed him and
his son by not ensuring safe use
of the prescribed treatment. The author omits the fact that federal, state, and
local laws, regulations and accreditation criteria require healthcare providers
to provide full explanation of recommended treatments and related risks in a
language that patients and families can understand. The responsibility is the providers’.
The suggestion that if this
father just had better literacy he would know how to use a syringe, his child
would not have died and he would not have consumed extra services, we taxpayers
would not have wasted our healthcare dollars on them is unfounded,
unsubstantiated, damaging to an already devastated family and a disservice to
Last time in this space I told Mandy’s
Story about the depressed 8-month old who transformed over the course of
one week of simple everyday interactions.
The story illustrates the scientific
work of Bowlby and Robertson on the stages children move through when separated
from their mothers due to hospitalization.
Mandy was well beyond the first stage
in a child’s response to separation: Protest. This stage is marked by wailing and sobbing in confusion,
fear, grief at being abandoned.
She was also beyond Stage 2: Despair.
The child becomes more hopeless and apathetic. She withdraws. Like Mandy. This
going quiet is not settling in. It is giving up and shutting down.
Mandy was well into Stage 3:
Detachment (or Denial). She had suppressed all emotion, including - maybe
especially, feelings for her mother. She hardly noticed when her mother left.
She was so withdrawn that she sought no mothering at all. Now, i would recognize that as a sign
of major psychological trauma.
There are many lessons in Mandy’s
story. More on that next time. s
history of attachment theory and the stages of separation, plus a good
bibliography, see Van Der Horst, FCP
& Van Der Veer, R. (2009). Separation and Divergence: The untold story of
James Robertson’s and John Bowlby’s Theoretical Dispute on Mother-Child
Separation. Journal of the History of the
Behavioral Sciences, Vol. 45(3), 236–252. Published online in Wiley
Interscience (www.interscience.wiley.com). DOI
10.1002/jhbs.20380 © 2009 Wiley Periodicals, Inc.
I conducted a pre-conference
workshop on engaging and empowering mothers whose children are
hospitalized with 15 nurse trainers and a whole class of nephrology students,
we talked about the importance of basic literacy skills as the foundation for
health literacy. We reviewed
screening questions that can be used to identify individuals who might benefit
from adult literacy training. One
nurse said, “But using these questions, I would have to refer everyone who
comes to my clinic.” Another said, “Yes,
that’s how it is.”
That’s how it is in some disadvantaged
US communities, too.
This discussion, and others during my
whirlwind week at Cape Town University and the Red Cross Children’s
Hospital, led to insights about
the undeniable links between basic literacy skills (the 3Rs - reading, ‘riting,
and ‘rithmatic), health and health literacy.
The 3Rs are fundamental skills for acquiring knowledge. So it is not
surprising that any way “health”
and “literacy” are defined, any way they are measured, they are
inextricably linked. More literacy translates, directly and indirectly, to more
health and more options and opportunities to regain, maintain and improve
health, accomplish one’s goals and fulfill one’s potential. Basic literacy is
the foundation for health literacy, computer literacy, science literacy,
financial literacies and other “types” of literacy used to function in
different social contexts.
In addition, we now have hundreds of
health literacy studies that show most people in most developed nations have
difficulty understanding and using information to manage their health and
illness and healthcare.
Since health and literacy are so
closely linked, healthcare organizations, especially hospitals and health
plans, should consider their ethical duty and the compelling financial and
practical benefits of taking the lead to improve adult literacy in their
service areas. As primary prevention. As a way to increase the effectiveness of
all other efforts. As the foundation for a healthy population, a pathway out of
poverty and the key to the advancement of women and society.
Simple, inexpensive steps include
collaborating with literacy enhancing services, and in their absence,
establishing programs, providing
space for on-site classes, providing health content for literacy training,
advocating for adequate funding, training personnel to understand and talk to
patients about the role of literacy in their health, expanding Reach Out and
Yes we rely on the schools to teach
literacy. And yes, many, perhaps most schools need to do a better job. But we
in Healthcare cannot reform Education; and we cannot wait for Education to
reform. To reduce the burden on
healthcare systems, to improve outcomes, to increase people’s capacity to
obtain the benefits of healthcare, address basic literacy in your service
Hamza, age 11, speaking to the conference about living with a "trachy".
With him is his mother Farahna, and his nurse, Jane Booth.
was a young mother, I was married to a sailor. A submariner. With about 100
other men, he was at sea half the year. 100 days at a time. Underwater. No
communication. As you might imagine, the wives and children were a close
community, a village if you will.
time a group of the wives decided to take a trip. I agreed to keep one of the
younger children for the week they would be away. The baby’s mother brought her to me on a Saturday morning.
It was the first time I met the child. Her name was Mandy. She was about 8
looked 80. Her skin was shriveled. She had a grey cast to her. She made no
sounds. Her eyes were dull and distant.
She hardly moved. She was clean, well dressed and fed. Her Mom had all
kinds of equipment for her. But Mandy was barely there.
mother assured me Mandy would be no trouble. She said, “You can just put her in
the play pen. She will be quiet.”
baby girl made no protest when her mother handed her off to me. She never even
looked to see her mother leave.
This child, Mandy, had not been in the
hospital, but it was as if she was
hospitalized. She spent her days lying in her crib, well tended, but
alone. Her mother was present; she
met the baby’s physical needs. But she never engaged or interacted. Mandy’s emotional needs, even the idea
that she had emotions, went totally unrecognized. With observable physical
At the time I was 22, my daughter Lisa
was 2. I had a high school education, no experience, no skills. So believe me,
I did nothing scientific or intentionally therapeutic for this child. I simply
folded her into our usual routine. The three of us went to the grocery store
and the park. We shared meals. I treated Mandy as my own.
And I watched an unforgettable miracle
That little girl bloomed before my
eyes. Hour by hour her appearance changed as she came back to life. She started
to mimic Lisa’s sounds and to initiate contact. She became interested in
everything around her. She laughed. She filled out. Her cheeks turned rosy. She
started looking and acting like a baby.
When her mother returned to pick her
up, Mandy recognized and reached out to her. She had regained the courage to
expect a response.
And, miracle #2, she got one. Her
mother gasped and covered her mouth. Her eyes filled with tears. She said, “I
never knew she could be so beautiful!”
Much later I learned of Bowlby and
Robertson’s work on attachment and the stages children go through when separated from their mothers due to
hospitalization. More on that in
Part 2. Stay tuned. ss
(c) Practice Development Inc. You are free to use this
story for teaching purposes only
as long as you retain the attribution and do not change the story in any
I twisted my knee. Before long it is too sore to ignore, so I
check with a physical therapist at the gym. He says he can fix it and that he
is a preferred provider on my insurance; his services will be fully covered. So
I visit him nine times over two months. My knee is better.
But my mind is boggled.
A week after the final scheduled PT session, I get a nine page so-called “Explanation of Benefits” from my health plan. For each visit, there is a not-a-bill
on which I’m not-billed separately for Exercise Therapy, Body Movement Therapy,
and Muscle or Nerve Trai.
I’m not sure what that third item is, or if I had it, or why the provider billed $50, the plan
allows $33.46, so I owe $33.46.
The Note says “3024”. So I
hunt through the pages and find a
section labeled NOTES. Here is Note 3024 (their caps): SEE THE “REHABILITATION
SERVICES” SECTION IN THE ALLOWANCE SCHEDULE OF YOUR CERTIFICATE OF
Looking further, I see on the back of each page that if I
disagree with the payment decision, I can “submit a request for appeal within
180 days of this notice”. It
should be in writing and include copies of my medical records.
Who has their medical records?
I can’t object to the decision since I can’t determine what the
procedure is. I don’t have a clue what the price should be.
I give up and take the stack of papers to my husband; he’s a
lawyer. After a 15 minutes pouring
over the pile, we conclude that
this not-a-bill says the services, including the mystery procedure “Nerve
Trai”, are covered, at least
partly, but the insurer is not
going to pay; perhaps because while the individual deductible has been
satisfied, the family deductible
has not. But the the employer says
there is no deductible on our plan... It seems the take home message is, “You
might get a bill.” Hardly and EOB.
More like a “Not-an- Explanation of No-Benefits.
This story would suggest that, despite the PhD and 30 years in
health services, I have low health
literacy. That is, I do not have the capacity to process and understand
information necessary to make appropriate health decisions. Likewise for my
husband the trial lawyer.
I’ve been impatient with the Plain Language crowd, thinking that
surely we all know about readability and jargon and all that by now. I am wrong. Really wrong.
Keep at it Plain
This is the last in our series
using the SAM Suitability Assessment of Materials to assess the
suitability of Beginnings
Guides to pregnancy and parenting for
low skilled readers who may be new to the healthcare system.
For a good cultural fit
match readers’ LLE
Leonard and Cici Doak, authors
of the SAM, concluded that most communication errors in healthcare are caused
by cultural gaps between patients and providers, particularly gaps in Logic, Language &
Experience - LLE. For anyone in health communications
-that’s everyone in healthcare, it’s an acronym worth remembering.
Logic refers to a way of
thinking about health, illness, treatment. Because of their
specialized training, healthcare professionals have a special way of thinking.
For example, to a clinician who sees 30 sick people per day, illness is normal,
another day at work, the usual routine.
But to those 30 sick people, their illness is exceptional, a major source of physical, emotional,
spiritual and financial stress for a whole family, a reason to miss work and
suspend the usual routine. The clinician’s routine challenge may be the
patient’s life changing event. Consider, too differences between Western and
Eastern medicine, between medical specialties, between medicine and public health, between medicine and
health promotion. A challenge for all health communicators is to understand and
match the learner’s logic about your topic.
Language refers to a way
of talking about health, illness, treatment.
Of course, logic and language
overlap. To a professional the problem may be hypertension exacerbated by
obesity; to the patient the problem is bad blood making it hard to walk up the
stairs. In the West, we describe epilepsy as a disease-abnormalities in brain
cells that cause seizures. Elsewhere, epilepsy is described as blessing - a sign that the person may be
a shaman; “the spirit catches you and you fall down”. Other language issues are
English is the language of the
healthcare system. If you are not proficient in English, you will struggle at
every level. And even if you are, you may still struggle when simple English
terms like stool and screen,
minor and routine take on a whole new medical meaning. Or when simple concepts like walking and pus
or go home take
on a whole new vocabulary like ambulation
Latin and Greek are the
language of medicine. Terms are long and technical, so a natural short hand
emerges. As public relations director for a hospital that specializes in heart
surgery, I encountered more than one family who objected to hearing staff refer
their loved one as “the cabbage in 206”. They were using shorthand for coronary
artery bypass, thinking and talking about the patient as his procedure and
Experience refers to
participation in events as a basis of knowledge.
A clinician lives in the
hospital or clinic. S/he is intimately familiar with the technology. S/he is in
charge and in control. Everything is organized for his or her convenience and
efficiency. His or her status comes from specialized knowledge. In many cases, the patient has no
experience and very limited knowledge. That means no basis on which to judge
quality, weigh options, or interpret instructions. At that same hospital, two
patients who had open heart surgery by the same surgeon on the same day were
re-admitted two weeks later. Their doctor had told them to “take it easy.” Both complied. One ran 3 miles instead
of his usual 5. The other never got off the couch.
Who is responsible for
bridging the gap?
Federal, state and local laws,
Medicare and Medicaid regulations, and accrediting bodies clearly state it is
the healthcare providers’ duty to communicate in a way the patient and family
can understand. SAM says Superior health education materials match the readers
LLE and present images and examples that are realistic and and positive.
Beginnings Guides are intended for a broad national audience. It’s
intent is to be as culture-neutral as possible. We chose cover art by Laurel
Burch in which our testers saw whatever was important to them.
Last words on SAM: Only
readers know for sure.
SAM is an at-your-desk review. It cannot tell you that your
information is easy to understand and use. Only the intended learners can tell you that they learn
easily from your document. SAM helps you get your materials to the point where
they are ready for Reader Verification Interviews. More on that next time.
Adults learn to solve a
problem they have now
Motivation to learn depends in part on the
person’s skills, and more on the information. Adults learn in order to solve a
problem they have now. Another way to say it: literacy skills always are used
for a practical purpose.
I’ll never forget a brochure titled How to Care for Your Son’s Penis, a topic many a new mom has wondered
about and few have been willing to ask about. So intended readers will be motivated to open the brochure.
So far so good.
the cognitive and
social skills that determine a person’s motivation
and ability to access, understand and use information is ways that maintain or
do not motivate
The brochure would fail a SAM review
on many counts discussed earlier in this series, each of which puts a damper on
readers’ motivation to read and learn and take action. But here’s the big sin: the six-panel
brochure uses five and a half panels to describe and illustrate the details of
the penis, it structure, functions and properly named parts.
None of it tells the mom what she
wants to know.
None of the dense narrative of facts
motivates her to adopt the desired behavior -which is yet to be mentioned. In
fact, this information is discouraging and disempowering. It overwhelms the reader with the author’s
knowledge, leaving her feeling like she can never learn what she needs to know
to take care of her child. It makes her unnecessarily dependent on The One Who
Knows. It takes up her time and leaves her with nothing she can use, no action
she can decide to take or not.
The last sentence on the back
panel of the brochure says, “The
best course is to leave it alone.”
There is no need for the rest of the
brochure. That’s all she needs to know.
A clinician could tell her that in less time than it takes to hand her
the brochure, and a lot less time than it would take her to wade through the
We are motivated to read and learn from information that is
clearly and immediately relevant; AND that describes in specific familiar
concrete terms the actions that will solve the problem that motivated us to
seek information in the first place.
As long as the desired behavior feels
doable. On this point, the offending brochure gets a high score. “Leave it
alone” is specific and doable.
She or he read our February
newsletter. And unsubscribed.
She or he wrote that the posting and the included excerpt from Beginnings Parents Guide is sexist
because the text does not address fathers and it does not use the gender
neurtral “he or she” in referring to the baby.
These are two sticky issues for
editors and reviewers of health education
materials. Decisions need to be
driven by consideration of the intended
readers and ease of reading and
Guides and the Center for Health Literacy Promotion we
to what degree to include fathers in parent education
and programs that intend
to support child development. My
editor is based on data from home visitation and parent eduction
programs that have participated in our research.
We have two databases now, totaling
2675 parent child dyads. The data are reported by the practitioners on the families
in their case loads (we have no access to identifying information). In each
database, fathers /male caregivers make up less than 1% of the parents. That
does not indicate fathers are not active and important in the children’s lives.
But the data do show clearly that it is still mothers who are the primary
caregivers. And so Beginnings Guidesare addressed
I can understand our unhappy reader’s
objection about the excerpt that
refers to the baby using the male pronoun he. If she or he were more
familiar with Beginnings, she or he would see that the
convention is to
alternate the use of he
and she in logical ‘chunks’ of
text. This avoids
the page, slowing reading, and interfering with comprehension by repeating the
awkward and unfamiliar he or she or s/he, as I have done here for
illustration. Another way around the pronouns is to use Baby with a
capital B as you would use a name.
I’m sad to loose a reader, and I appreciate
his or her passion for equality,
and that she or he brought these issues to the forefront for
The National Library of Medicine staff agrees with Howard K. Koh and colleagues that federal initiatives can improve Americans’ health literacy and help the nation move beyond the current cycle of crisis care (Feb 2011). There are comprehensive, evidence-based, noncommercial, free, US government sponsored online resources that meet the spirit of the authors’ call for action.
The library offers health literacy inspired Internet services that are not mentioned in the article. For example, MedlinePlus.gov is a gateway to information about more than 900 diseases and conditions, as well as public health challenges. MedlinePlus also provides background information about medications, vitamins, and food supplements. It is available in English and Spanish, has health summaries in forty-three other languages, and provides easy-to-read medical information. In addition, MedlinePlus Connect links electronic health records to consumer information within MedlinePlus.gov via free, open-source software. Another service from the National Library of Medicine is Clinicaltrials.gov, a gateway to clinical trials in the United States and other nations. This website was the first to provide standardized clinical trial results.
The library also offers Genetics Home Reference, a guide to genetic conditions and human genetics written for lay audiences, and Pub Med Health, which enhances consumer decision support by providing one-stop access to international systematic reviews and clinical effectiveness information.
These wide-ranging consumer services exist because federal agencies, institutes, and centers within the National Institutes of Health and the Department of Health and Human Services are committed to enhancing the nation’s health literacy.
Robert A. Logan
National Library of Medicine
is a literacy skill that is used to personalize information. We interact
with the information and with others (family, friends, professionals) to make
meaning from it and decide how it applies to us in our situation, with our
resources and our challenges.
also is a parenting skill used to engage a child and stimulate learning.
physically changes brain chemistry
Brain imaging shows how interacting
with information stimulates learning. It produces a measurable chemical change
in the brain that takes the information into long term memory. No interaction,
no long term memory. No recall. No ability to use the information for health
questions, spark thinking and action
You can work interaction into print
materials, face-to-face teaching and any media format. By now you may not be
surprised to read here that the way to facilitate interaction for learning is
to ask a reflective question that requires the learner to think. In
printed matter, our subject here, interaction usually looks like blanks to fill
in, boxes to check, pictures or words to circle, choices to make, alternatives
example, In the Beginnings Parents
Guide, running text about lead testing for infants is replaced by a set of
five short personal statements and check boxes to choose [ ] Yes or [ ] No. This follows guidelines we’ve discussed previously in this
space: no more than 5 items are “chunked”
under one subhead; a 10% cyan
(blue) screen behind the text draws the reader’s attentionto the
information. The key information
is placed at the upper left where reading starts, using the principles of reading
gravityto further ensure the reader does not miss it. The headline engages
the reader with a reflective question that requires thinking: Does your baby need a lead test?
Thinking through each question and
physically checking the box is the interaction
that stimulates the chemical change that fosters long term memory and converts
information to knowledge that can be used again later.
text is easy to read, understand and forget. Read the next sentence now;
when you finish reading the rest of this post, see what you recall.
Your baby needs a lead test if you live in a home built before 1960 or
your home has lead pipes. Also, If you live near a highway, lead smelter or
recycling plant, or you live with someone who works with lead, your child needs
a lead test.
A question-answer format is more
engaging than straight text, but it is passive, rather than interactive.
can build interaction into audio and video taped information by including a
question for each important point. Ask listeners a direct question and include
a pause. After the pause, give the answer. In face-to-face teaching, use the
“teach back method”. Ask the learner to tell you in their own words what they
are going to do at home, and what
problems they might encounter. Use their words in this conversation.
the Suitability Assessment of Materials - says that Superior health
education materials present problems or questions for reader response.
Information that does not offer interaction does not stimulate learning and is
not suitable for health education. Information that improves health literacy is
Now, close you eyes and say out loud
the ways you know that does a baby needs a lead test.