Center for Health Literacy Promotion - Action research for effective use of health info & services
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How to use print materials to promote maternal health literacy
The Making of Beginnings Guides
The 7th Attribute - Navigation Assistance
CORRECTION: The discussion paper posted here yesterday-
New IOM Discussion Paper on Health Literacy


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Center for Health Literacy Promotion Blog

Government shutdown is all FUD

FUD: Fear Uncertainty &Doubt. That is the foundation of the extreme House Republican’ position on the Patient Protection and Affordable Care Act of 2010.  That’s why they call it Obamacare- in order not to say “protection” or “affordable”; and  to hide the fact that the law was enacted 3 years ago, before the President was soundly re-elected running against an opponent who vowed to repeal it.
FUD, initially an IBM strategy to eliminate market competitors by spreading fear uncertainty and disinformation about their products, seems to be working for the House Republicans. At least to some degree, for now. Polls and analyses of social media suggest that some people favor the Affordable Care Act while opposing Obamacare.
Home visitors: “Obama snoopers” = FUD
I ignored the FUD like a parent ignoring a toddler’s temper tantrum until I saw the Fox “news report” about the Affordable Care Act’s expansion of home visitation. That’s  a preventive strategy in which public health nurses, social workers or trained paraprofessionals connect families to healthcare and community resources and offer health education and social support.  It’s origins date back to the 1800s. Programs are run by county health departments, school districts, foundations, and private-public partnerships. Home visiting programs are open to poor parents who request assistance.
It’s worth noting that in many countries, home visiting has long been standard for all parents, because they acknowledge that parenting is a challenge and everyone can use assistance. And because research shows it improves child developmental outcomes and has immediate and long-term benefits that extend to entire families and to the healthcare, education and justice systems. My research  shows that parents in home visitation significantly improve their health literacy, capacity to manage personal and child health and healthcare.
Pure FUD
A Fox announcer and a “business expert” called home visitors “Obama snoopers”.  They said  in this “brand new federal program”, “government home inspectors” make random, unannounced  “forced home visits” to snoop on parents.  This is not news. This is pure FUD - disinformation (lies) that specifically intends to instill fear, uncertainty and doubt about the Affordable Care Act, to prevent people from learning they can afford good healthcare coverage.
I have worked for decades with home visitors and know them to be among the most  caring, dedicated, respectful people on the planet, unlike the FUDders on Fox and in the House.
FUD won’t work for long. Yesterday, the heart of the Affordable Care Act started (keep saying the real name), opening access to healthcare for millions of poor and uninsured citizens. Almost 3 million people visited State exchanges were similarly overwhelmed.  People are about to find out that the Affordable Care Act makes good healthcare coverage affordable -for them. That will help them see through the FUD.  Insurance companies are helping too. They are enrolling people they previously rejected because, with the ACA, it’s good for business. Healthcare executives are calling for more doctors, nurses and allied health professionals - doesn’t really sound like a “job-killer” does it?
On the other hand, the House Republicans just put hundreds of thousands of people out of work in hopes they can FUD us citizens of the richest country in the world into continuing denying healthcare to poor people and sick people in order to preserve the freedom of the rich to get richer.

Research, education, and maternal health literacy Mothers invest time for their children

AHRQ and the journal Demography report research finding that the more education a mother has, the more time she spends caring for and playing with her child. This seems to suggest that education makes the difference, or that less educated mothers are less invested in their child’s health and development. 
More likely it is the advantage that afforded educated mothers opportunity to go to college and the further advantage that accumulates from higher education....more money, more resources,  more skill, better jobs, more discretionary time and energy. All these things create more options and opportunities to obtain, understand and use information and services in ways that enhance personal and child health - maternal health literacy.
The other side of the coin is that mothers who have less education come from less advantaged backgrounds, start with fewer resources and opportunities, are relegated to low paying jobs, and work more and to earn less.
I was a single  mother with a high school education and few marketable skills.  I worked three part time jobs - one to pay childcare so I could work the other two to pay the rent and take a course here and there.  It took 12 years to get my BA while working full time. I was in my 50s by the time I could afford a PhD. My daughter got less attention than I wanted to give her.  So the reports are right -- until they say that educated mothers  “invest more time”  in their children than less educated mothers.
If you don’t have money, you have to invest more time for your child than with your child. Less educated mothers are no less invested in their children. Lack of income and education prevents parents from making the kinds of investments they want to make in their children.  I hope economist James Heckman is right when he argues that it is the quality of parenting, more than the number of parents, their income or education that determines outcomes for children. But that, too, is an over simplified argument.
AHRQ Research Reports Sept 2013
Kahil A, Ryhan R, & Corey M (2012) Demography 49 pp 1361-1383
Heckman,  James J. (2013) Giving Kids a Fair Chance (A Strategy That Works) MIT Press, Cambridge, Mass.  ISBN 978-0-262-01913-2

Top Reasons to Promote Maternal Health Literacy #5 (#1 if you are talking to a legislator or business leader)

Skills beget skills. Cognitive and social skills needed to successfully manage personal and child health and healthcare are those needed for success in life across cultures. They are skills that empower people to  be what they want to be, to make choices and transform those choices into desired actions and outcomes. 
These life skills develop most easily in early childhood given a stable supportive family environment. Disparity in brain development in children growing in disadvantaged vs enriched environments becomes apparent in the first year.  Quality of family life matters more than the number of parents, their income or education. But poverty and accumulated disadvantage prevent parents from doing their best to sustain the stimulating home environments that support optimal development, especially when they themselves lack skills, resources and role models. Early intervention --- early childhood education, parenting training, family support and home visitation programs--- can produce positive and lasting effects on children in disadvantaged families.  
Nobel Laureate and economics professor James Heckman, makes the business case for shifting public policy to support programs that offer parents information, choices and assistance.  Promoting health literacy means providing direct supplemental assistance that specifically and intentionally enables parents to develop and hone the range of life skills used to participate in healthcare and manage personal and family health at home.
Must read: Heckman,  James J. (2013) Giving Kids a Fair Chance (A Strategy That Works) MIT Press, Cambridge, Mass.  ISBN 978-0-262-01913-2 
In addition to Heckman’s monograph, the book includes illuminating commentary by 10 experts from multiple disciplines.

Promoting Health Literacy with Beginnings Pregnancy Guide New Online: Resources for Mothers

My favorite feature of the upcoming 9th edition of the Pregnancy Guide recognizes it is a digital world. You told us that you and your families need print materials since few in your caseloads have computer access or devices to use digital information. Other surveys confirm you’re right.
Poverty and the Digital Divide
In December 2010, 40% of  US households, did not have a broadband connection in the home.  Lack of access is a marker of poverty. Mississippi is the poorest state and has the highest proportion of households without access, 65%. Similar rates of poverty and no-access are found in AR, TN, WV and OK.  Compare to wealthy states led by HI with 74% connected, only 26% with no-access.  In cities, there is commonly low access in the urban core suffering poverty while the wealthy suburbs are fully wired.
Still, people find a way to get online
In a survey of over 2000 Mississippi households,  79% said someone in the home had used the Internet. Outside locations included school, workplaces and the local library.  In some libraries, free internet service is the biggest draw into the building.
 Among the reasons for having no access at home were cost and lack of equipment, but the key reason seemed to be lack of understanding of the value of the Internet. an aspect of low health literacy.  Of those without access, 46% said they didn’t need it or were not interested.  Others, especially younger, less educated, low income adults said they mostly go online using their smartphones.
Access in steadily increasing
A February 2011 survey found 68% of households with a connection, suggesting significant growth in just a few months.  Some of the most rural areas seem to be improving quickly; but the South has shown only modest improvement. The Obama administration has directed billions of economic stimulus dollars to increase Internet access. And some companies have just begun offering low-cost broadband connection to families with a child who qualifies for free school lunch.
Finding reliable information is part of health literacy
Any family expecting a baby has a need for information. Beginnings Pregnancy Guide is intentionally focused on essential health behavior topics directly linked to pregnancy outcomes. Some parents want to know more.
New Resources for Mothers coming to
For those who do have Internet access, and to motivate those who don’t to find a way, the new 2014 edition of  Beginnings Pregnancy Guide includes this icon to encourage readers to visit the new Resources for Mothers pages of  The new section provides links to information and resources from reliable sources that Beginnings Guides staff have reviewed and found easy to use. This reduces the need for advanced searching and evaluation skills. We envision the new Resources for Mothers as an easy entry into online self-directed learning about health and an opportunity for parents to improve their health literacy.

Top 4 Reasons to Promote Maternal Health Literacy

1. Health Literacy is a key determinant of health. 

•Limited health literacy, measured as ability to read medical terms and documents, is linked to riskier health choices, less participation in preventive activities, more accidents, poor adherence to medication, more hospitalization, increased morbidity and premature death.

• Studies using more comprehensive measures demonstrate that health literacy has a specific direct and independent effect on self-assessed health.

• Limited health literacy in mothers is linked to increased risk of  developmental delays and reduced participation in Early Intervention when delays occur.

2.  Health literacy means empowerment: the capacity to make choices and transform those choices into desired actions and outcomes.(World Bank)

• Mothers cannot achieve their fullest health potential and nurture a healthy competent child unless they are able to take control of those things which determine their health.  (Ottowa Charter for Health Promotion)

3. Efforts are highly leveraged in pregnancy and early parenting

• Pregnant women exhibit readiness to learn and change well above national norms. They are becoming healthcare decision-makers for themselves and their families. Developing their health literacy in pregnancy can benefit entire families across their lifetime with short and long term benefits extending to the healthcare system, the justice and to the schools; to the public health and the economy.

4. Mothers’ health literacy is an important factor in prevention of noncommunicable diseases that are now the leading causes of death in the US and globally.

• Both limited health literacy and noncommunicable disease disproportionately affect poor, under-educated, and minority populations.

• Limited health literacy reinforces inequities. 

• Promoting maternal health literacy and empowering mothers are recognized global health strategies for reducing the burden of noncommunicable disease with origins in early development, and associated disparities.   (WHO, United Nations)

Pregnancy Guide Update: Obesity a disease?

The American Medical Association House of Delegates declared obesity a disease
last month. Is this good for maternal and child health?  For public health? 
It’s not new
In 1995 the National Heart Lung and Blood Institute called obesity a “complex
multifactoral chronic disease”. Ten years earlier, almost 30 years ago now,
NIH called prevention and treatment of obesity a national medical priority.
With 90 million Americans now officially obese, it seems few clinicians got the
Obesity prevention not a priority in maternity care
In researching issues of weight gain in pregnancy for  the update of the
Beginnings Pregnancy Guide, I found that weighing is still the only procedure in
early prenatal care that has shown any impact on outcomes. And yet it has
become uncommon for a pregnant woman to be weighed at prenatal visits or
when being admitted to a hospital for birth. Prenatal care providers have reported
they seldom weigh pregnant women or discuss weight for fear the conversation will interfere with their patient/provider relationship. Others said they do not know how to calculate BMI. They also must not know about the many BMI calculatorsthat will do it for them. One can only hope that calling obesity a disease will change these attitudes. 
Healthy mothers, healthy babies. Fat mothers, fat babies
The issue in pregnancy is that a mother with an excess of fat cells produces a baby
with an excess of  fat cells. So we are building obesity and the attendant health issues into the next generation.
ACEs -Adverse childhood experiences - witnessing or experiencing interpersonal violence is closely related to obesity. A woman fearing abuse may hide in obesity, intentionally making herself unattractive to protect herself. Is that a disease? With medical treatment, many such women have lost weight, and gained it right back. That’s how the lifelong effects of ACEs were discovered.
Other mothers have said it doesn’t matter if they gain too much in pregnancy since they are just going to get pregnant again; the weight can come off after that. Only it rarely does.
Turning people into patients
Google “obesity disease”. The first thing that pops up is ad ad for weight loss surgery. This may be more telling than official statements.
Especially when we consider the Forbes June 28 report that the AMA’s Council on Science and Public Health, the group appointed to address the question, advised against declaring obesity a disease. But the delegates chose ignore their own advisors.
We have to ask, what was so compelling?
Perhaps it is the implementation of the Affordable Care Act that will bring healthcare coverage to millions of Americans previously excluded from the healthcare system. At least a third of them are obese. Now they can be patients.
According to CDC 35.7% of Americans are obese, 49.5% of African Americans, 40% of Mexican Americans. Rates vary widely by state. Find your state rate at  Now all those people are diseased
and in need of medical treatment.
Calling obesity a disease, again, could draw attention to related health issues, but it hasn’t in 20 years.  It could result in better maternity care, but the declaration is unlikely to improve clinicians communication and counseling skills.  It could spark a Kennedy-style physical fitness craze, but that entails behavior change, and the same communication issues.  It could increase research on obesity, but NIH already has a Strategic Plan for Obesity Research and funds nearly a billion dollars worth of studies annually. lists 49 obesity-related research solicitations currently open for submission of grant applications. 
Only one thing seems certain, making obesity a disease will increase medical treatments and costs, and revenue to AMA constituents.

Beginnings Pregnancy Guide Update: “Entertainment Ultrasound” Warning

Choose 2D, 3D or 4D.  In-studio or at your baby shower. Announce your pregnancy with a “viewing party”. Get a video at the mall. Post it on Facebook. Select the premium package offered by a Miami OB-GYN’s office and get a weekend discount.
The American Institute of Ultrasound Medicine, American College of Obstetricians and Gynecologists, American Academy of Family Physicians, March of Dimes, US Food and Drug Administration, England’s National Institute for Health and Clinical Excellence, the UK’s National Collaborating Centre for Women's and Children's Health, and other national and international experts all have published strong recommendations against non-medical use of fetal ultrasound.  The Society of Obstetricians and Gynaecolgists of Canada calls for a complete ban on non-medical use of fetal ultrasound. The state of Connecticut legislated a ban in 2009.  The FDA says that creating fetal keepsake ultrasound images is “an unapproved use of a medical device,” and those who perform ultrasonography scans “without a physician’s order may be in violation of state or local laws or regulations.”
“You don’t need an excuse to be happy.”
Still internet ads for non-medical ultrasounds abound, complete with slogans like this, implying you don’t need a medical reason for the “painless, relaxing procedure”. The growing popularity of “keepsake ultrasounds” is not due to cost or access issues. Most insurance companies pay for one or two doctor-ordered ultrasounds as part of routine prenatal care, and commercial ultrasound is not cheap.
Prices start at $175 for the 3D in-studio option. $500 for an “ultrasound party” at the location of your choice. The cheapest rate I saw was $75 for a basic “gender determination” scan; it’s discounted to  $55 on Saturdays one OB-GYN’s office. These commercial services are not regulated or standardized.
Safety Concerns
Commercial sonographers say that ultrasound is safe. I found unclear statements like: “All research provided has been proven to be safe for expectant mothers and baby, as long as the procedure is done by a trained professional, and no longer that one hour intervals.”   First, we have to ask, research provided by whom? and What about the research that was not provided?  Second, remember that no research ever proves  anything. It can only offer statistical evidence. Then, a more accurate statement is that repeated ultrasounds have not been proven harmful. Still  the evidence has convinced all the advisory and regulatory agencies that entertainment ultrasounds are worrisome.
Ultrasound uses sound waves, not xrays. So radiation is not the issue. But the procedure targets the fetus with heat and  pressure, especially prolonged, 4-D studies. New York state legislators proposed a ban on ultrasonography for entertainment purposes, citing data showing that 4Dl ultrasound equipment can emit eight times more energy than the machines commonly used in medical settings. The risk of  effects on fetal development has been demonstrated in both human and animal models, and remains, at least theoretically, so that  the FDA concludes exposing the fetus to ultrasound with no anticipation of medical benefit is not justified.
Additional concerns about non-medical ultrasonography include the possibility that non-medical ultrasonography will fail to identify a problem with the baby, falsely reassuring the patient and her family; or that a false-positive result could create unnecessary anxiety and follow-up testing. Machines are unregulated so may not be properly calibrated or maintained. Technicians may not be well-trained or proficient. “gender determination” had never been an accepted use of of ultrasound technology and raises thorny ethical issues.
Medical ultrasounds are for doctors           
Here’s the problem:  In medical settings, the sonographer is commonly prohibited from explaining ultrasound results to the patient, who must then wait for days or weeks to get the results from the physician who ordered the scan. Family members may be barred from attending the ultrasound appointment to avoid congestion in the radiology department. Parents may not receive still pictures or video to take home. If they do, they still cannot send it to a friend or post it online.  Until these disempowering practices change, parents and  sonographers  will continue to seek a more informative,  convenient, family friendly experience.

Check  Technician’s Credentials                      
Qualified sonographers are trained and certified. Find one, or check a technician’s credentials,  at  the American Registry for Diagnostic Medical Sonography (ARDMS) 

Beginnings Pregnancy Guides says, “Ultrasound is safe for you and Baby.”  [p8] That remains true. The 2014 edition will add this statement: Many healthy pregnancies do not need ultrasound. Extra  “keepsake" ultrasounds may be harmful.  The Registry of credentialed sonographers will be posted on the new Mothers’  Resources page at More on that later.


“Health Illiteracy” is Not a Disease

Sometimes iPhone helps too much;  so we inadvertently retweeted this, and then the retweet was favorited: Health Illiteracy-- a disease that also afflicts doctors...  I would not intentionally repeat this phrase. I hope you won’t either. Here’s six reasons why:
1.  The term “health illiteracy” focuses on patients’ deficits and places patients in a position of failure and incompetence. This approach generates anxiety and resistance in patients and calls up their defenses. It disempowers patients while requiring that they be active decision-makers and participants in their care.
2.  The term “health illiteracy” equates lack of medical and healthcare vocabulary -jargon-  and disease knowledge with illiteracy and all the stigma that goes with it. It situates in the patient systemic problems in healthcare  (indecipherable & conflicting information, inefficiency, high costs, poor outcomes); so that when treatment is successful doctors get credit, and when it’s not, patients get the blame.
3.  “Health illiteracy” is neither a disease nor an affliction.  This metaphor further tips the power imbalance. it implies health illiteracy is a problem that patients have and doctors need to treat or manage. It cements the notion that patients cannot grasp doctors’ specialized knowledge or use it for their personal benefit; so that an “appropriate health decision” is equated to compliance. And non-compliance is framed as cognitive deficit or irresponsibility.
4.  Here is the first definition of “disease” produced by a Google search: “a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors.... The metaphor adds stigma to stigma implying cognitive deficits and disabilities, rather than underdeveloped skills, poor quality education, inexperience with the healthcare system, or poor communication and complex, concept dense, jargon laden, overly technical information.
5.  An “affliction” is defined as a condition of pain, suffering, or distress. Most      adults who scored in the Basic or Below Basic levels on the  2003 National      Assessment of Adult Literacy reported that they read well. They are not “afflicted”until the enter the healthcare system.
6.   The tweeted blog is titled “Screening-illiterate physicians may do more harm than good”, which a tweeter translated to the comment that health illiteracy afflicts doctors as well as patients.
The blog bemoans that many doctors are “functionally illiterate regarding basic screening concepts”  This language conflates  functional literacy with knowledge. Functional literacy (the 3Rs) refers to  skills used to gain knowledge.  Lack of a particular set of  knowledge, does not indicate inability to read or to learn.
Conversely, “functionally illiterate” means having reading and writing skills insufficient for ordinary  practical needs. Any one who got into medical school can read and write.  If they do not understand screening concepts, that says more about their educators than about their cognitive ability.  Further,framing lack of knowledge as functional illiteracy -inability to gain knowledge - is as          disempowering to doctors as it is to patients. 
I agree with the blog authors’ conclusion that more attention needs to be paid to improving physicians knowledge (not their literacy) about screening tests in order to reduce use of ineffective tests that expose patients to potential harm -- especially health literacy tests.
More attention also needs to be paid to increasing understanding of literacy and health literacy.
Here’s the blog:


With few exception, childbirth is normal % healthy, but...

Of the 10 most frequently performed in-patient procedures,  5 are related to maternity and newborn care (2010 figures - latest available).
Bad news: the cesarean section (surgical delivery) rate continues to rise; it is up 41% since 2004, despite global evidence that rates over 15% do more harm than good. This is a place to cut the cost of maternity care. A cesarean section costs on average $9956 more than vaginal delivery.
Good news: Fetal monitoring, circumcision and stripping of membranes are performed less frequently now than in 1997. The reduction in procedures returns to mothers some control over their most significant life event, and begins to recognize that over-management is not beneficial.
Procedure Frequency       Number Performed          Increase in
Rank                                  in 2010                            frequency

Repair of obstetric                  1,292,000                     No change

Cesarean section                     1,278,000                    41%

Circumcision                           1,164,000                    -31%

Artificial rupture of                  917,000                       -5%

Fetal monitoring                     875,000                       -23%

Maternity care costs up 41-49% since 2004 Where is the value?

The greatest opportunity to make healthcare more affordable and improve
the health status of the population is to improve the way we deliver and pay
for maternity care. Investigations of the cost of maternity and newborn care
usually report charges made by providers. But charges are routinely discounted
at widely varying rates, so the figures are not very informative re actual cost. 
A new report shows actual payments made  in 2010 (latest figures) by employer
-based commercial insurers, Medicaid and parents.
Cesarean delivery payments vary by state, by regions within states, by hospitals
within regions,  and by providers within hospitals, so vaginal birth and cesarean
(surgical) delivery are reported separately. A summary of findings in the table
below suggests where to focus advocacy efforts.

Item                  Employer Insurance +        Public Insurance
Vaginal              Out of pocket                    Medicaid
Average Total
CHARGES                      $                                         
Vaginal                         32,093                  29,800                                                                                  
Cesarean                      57,125                  50,374
Average Total
Vaginal                        18,329 + 2244         9,131                   
Cesarean                      27,860 + 2669        13,590
Prenatal Care
Vaginal                        3,180  (25%)           2,405 (39%)
Cesarean                     3,580  (21%)           2,859 (36%)
Maternal Care
in hospital
Vaginal                        9,048 (72%)            3,347 (55%)
Cesarean                     12,739 (76%)          4655 (58%)

Newborn Care
in hospital +
3mo postpartum
Vaginal                        5,809 + 558           3,014
Cesarean                     11,193 + 721         5,607
Vaginal                       30,875 + 1241        13,875
Cesarean                    45,496 + 1351        19,971

Cesarean delivery costs are 50% greater than vaginal birth for all payers. 
And cesarean delivery payments by commercial insurers increased 41%
between 2004 and 2010. In addition, parents’ out-of-pocket costs increased
The best outcomes for women and babies appear to occur with cesarean
section rates of 5% to 10%. Rates above 15% seem to do more harm than
good (Althabe and Belizan 2006) Despite the evidence and the costs, the
US cesarean rate for 2010 was 32.8%.
The table suggests one explanation for the high cesarean rate is that surgical
birth is more lucrative than “the regular way”.  Commercial payers paid
clinicians an extra $1464, and paid hospitals an extra $7518 for cesarean
vs vaginal birth. Those incentives are hard to ignore.
Further, the table shows that 70-84% of all maternity payments went to
in-patient care. But the vast majority of mothers and newborns are healthy
and the vast majority of births are routine.  Prenatal care and support 
have been shown to reduce  preterm birth, failure to thrive, and other
factors that land babies in Neonatal Intensive Care Units where costs were 3.7
to 5.6 times those for other babies. More investment in prenatal care and support
would reduce the need for  cesarean, and could help re-align financial incentives.
Truven Health Analytics (2013) The Cost of Having a Baby in the United States.
Childbirth Connection, Catalyst for Payment Reform,Center for Healthcare Quality
and Payment Reform. 
Althabe F, Belizan JF. Caesarean section: The paradox. The Lancet 2006;368:1472-3.
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