Center for Health Literacy Promotion Blog
Accessibility: A Universal Precaution
My dad states his age as older-than-dirt. He's lost all hearing and has a bad
back. He gets around with a walker. It's impossible for him to call the doctor
to report an issue or schedule an appointment. He cannot drive or use public
transportation. A routine office visit—getting dressed, out of the house, into
the car, out of the car, into the office and onto the exam table, and then the
whole process in reverse — each
step is an exhausting physical challenge and an assault on his pride. It's also
exhausting and trying for Mom, his primary caregiver, driver and emotional
compass. A check-up takes most of
a day. Nothing is simple.
Recently, Dad slipped off
the edge of the bed and twisted his knee trying to get up. That led to four 911
calls: one to get him up (and discover he could not stand), and three
"citizen assists" to get
him to the doctor's office, from there to the hospital, and after a night in
the hospital, to get him home and into bed. Thank you, my fellow tax payers.
He's not alone.
About 70 million of us Americans have such access needs that
affect hearing, vision, or mobility and impair capacity to obtain heath
information and services. People
with access needs contend with marked health disparities that may originate
from the most fundamental level
—like inability to schedule an appointment, open a pill bottle, or read the
fine print dosing instruction. Disparities also come from health professionals
and researchers acting on assumption and stereotyping instead of data.
Access: first pre-requisite to health literacy
Access, the capacity to obtain…. information and services,
is the first prerequisite to health literacy. And yet, several reviews report
accessibility is not a topic of health literacy research and scholarly
discussion. Further, access needs
is a missing demographic variable in most national databases.
Case in point: the 2003
National Assessment of Adult Literacy population sample included 30% with
access needs; among them nearly half (48%) were deemed to have below basic
health literacy. This is likely an underestimation since NAAL excluded those "who
could not be interviewed due to cognitive or mental disabilities" and did
not report demographics of those with access needs. A worldwide review of
interventions to improve health literacy reports that research has, for the
most part, followed NAAL's example and intentionally excluded people with
mental or physical disabilities, along with other disadvantaged or
"hard-to-reach" groups. Lumping together and then excluding "the
disabled" from research causes disparities to persist; it's ethically
questionable and alienating.
Reacting to a nurse who obviously assumed that his access needs
indicated a cognitive deficit, Dad retorted, " I've got a little back
problem. I can read."
Integrate accessibility into research, practice, policy
Health literacy standards should include accessibility and
universal design approaches that make healthcare environments and information
products usable to the greatest extent possible by everyone, regardless of
their age, ability, or status in life.
Health literacy research should include accessibility, directly involve
people with access needs, and report access-related demographics. To make the
research process itself accessible to those with access needs, reports, like
other health information, should
be available in multiple formats: standard, large print, Braile, text only
electronic format, audiotape, sign language.
Experts suggest we make
greater use of access-enabling assistive technology to communicate with people
with disabilities. The technologies show how universal design and commitment to
accessibility help us all; email,
voice recognition, captioning, GPS — all were originally designed for
those with access needs.
References & further reading
Perlow E. (2010).
Accessibility: Global Gateway to Health Literacy. Health Promotion Practice
11 (1); 123-131.
D'Eath M, Barry MM, &
Sixsmith J.(2012)tera Rapid Evidence Review of Interventions for Improving
Health Literacy. Stockholm: European Center for Disease Prevention and Control.
Health literacy (HL) thought
leaders on the National Academy of Medicine’s Health Literacy Round Table are
calling for a new standard definition of HL. Because there are too many definitions
in play and researchers have a tough literacy task just to choose one. And because various experts have come
up with too many piggy-back terms that connect specific content to the “central
concept”. And since we can’t measure things like “basic information” and
New definition to include
providers’ literacy, context, progress, action
The new definition would first and
foremost acknowledge that HL is multidimensional, that is, two sided— including
“both sides of the exchange”: literacy skills of individuals’ (patient or family members and “information
providers”) on one side, and system demands and complexities on the other. The broadened perspective recognizes
that healthcare professionals and other info-providers in insurance,
pharmaceuticals and IT, like patients, have literacy skills. Those skills may or may not enable
Those-Who-Know to understand what patients are saying or to communicate
the proposed broadened view acknowledges the role of context — “the
demands and complexities” of healthcare delivery and financing systems make it
difficult for everyone to participate in and obtain the full benefit of
healthcare, health promotion,
health protection, and “health coverage” (I think that means
The new perspective embraces
the notion of progress—well, shakes
hands, at least. HL is described
as a process or a pathway, implying that improvement is possible —although the
document never uses those terms, referring instead to process and change. Nonetheless, this is a big step away
from old evidence suggesting that adults rarely change their level of
functional literacy, and the surprisingly wide acceptance of the inference that
HL is a fixed individual trait.
Further, HL “operates” in various settings —
healthcare, insurance and pharmaceutical organizations are mentioned. And it
operates in various media, not
Finally, the new definition
will link decision and action. (Applause!).
Another big step from “appropriate decisions” usually interpreted as
compliance, to “informed action”, which may be against medical advice and still
not indicate a cognitive deficit.
Perspective, as the document is called, is indeed a welcome and overdue broadening
of the dominant view of HL as seen from US academic medical centers. However,
essential issues remain. Perhaps unresolved debates explain why a new
definition is not proposed, only described by its components.
Health Literacy is
dimension still missing
is not simply two sided. Literacy skills may be one dimension that exists
on “both sides of the exchange”,
but literacy itself is multidimensional.
The missing dimension in health literacy as defined in the US, and still
in the new perspective, is the social dimension.
is a social construct. Its meaning and measure are constantly evolving to
reflect society. Literacy is
different for different jobs, communities, goals, as well as for different
genders, ages, cultures, times and places. In the same way, the meaning of
health is also multidimensional, socially defined and evolving. Most healthcare decisions are made and
acted on —or not— in homes and communities in everyday
life, not by appointment in offices and hospitals.
At the intersection of health
and literacy, it is not surprising to find a diversity of overlapping, sometimes conflicting, always evolving
definitions and measures. Experts
did not come up with a bunch of new terms to tie their favorite content to a
clear central concept of HL — rather they recognized that the theory of
multiple literacies for multiple contexts (financial literacy, computer
literacy, Spanish literacy) applies to HL, too. So we have maternal HL, mental
HL, oral HL, teen HL, LBGT-HL, health insurance literacy, and many disease
Alternative: new improved
Try as we might to make health
literacy precise and clinical with biomarkers and specific corrective actions
that produce predictable results demonstrated in randomized controlled trials,
HL remains a social practice that is complicated, dynamic and messy. To understand and influence HL, the
challenge is not to distill its meaning down to something easy to research, but
to figure out how to research something messy.
Pleasant, A., R. E. Rudd, C. O’Leary, M. K. Paasche-Orlow, M. P. Allen, W.
Alvarado-Little, L. Myers, K. Parson, and S. Rosen. 2016. Considerations for a
new definition of health literacy. Discussion Paper, National Academy of
Medicine, Washington, DC.
Cook-Grumperz J (Ed). The
Social Construction of Literacy, Second Edition Cambridge University Press
Excerpt free online: http://www.langtoninfo.com/web_content/9780521819633_excerpt.pdf
Previously in this space we’ve said health literacy for
and health promotion is distinguished from
health literacy for disease treatment. The latter is typically operationalized
as functional literacy (reading and math) in a clinical setting. In contrast,
to improve risk behaviors and conditions that affect their health, individuals,
families and groups use interactive and critical health literacy skills. These skill sets are applied mostly at
home and in the community. We’ve looked at critical health literacy.
Today we look at interactive health literacy, IHL for short.
As we might expect, research is limited
and controversy abounds.
Not much is known about IHL
PubMed lists just 13 articles on “interactive health
literacy”, two of them review
articles. I found no listings on “interactive health literacy” AND “parent” or
“mother”. Most IHL studies have been reported from outside the US.
Canadians Manafo and Wong
looked at IHL promotion programs for older adults with chronic disease. They
differentiated IHL from functional health literacy by the aim of the
intervention (skill development to increase capacity to find information and
make personal meaning from it vs. information giving to increase knowledge).
They found five studies on IHL for seniors, 1 from Canada, 4 from eastern U.S. All relate to training elders to search
for health information online. My understanding of Nutbeam’s model of IHL is
that it refers to interpersonal interaction and communication, not interactive
(vs. static) information.
The reviewed studies are limited by small samples, no comparison groups,
non-experimental design, non-comparable measures and outcomes.
The second review, from
England, is a concept analysis of critical health literacy. Sykes and
colleagues describe critical health literacy as a set of characteristics
including effective interaction between service providers and users. Key
attributes include social and communication skills, and interpersonal
skills. So critical health
literacy is seen as “arising from …ability to interact effectively”, that is to
navigate services, and to advocate and articulate confidently when
communicating with a health professional —IHL. This view looks at the faces of health literacy described by
Nutbeam as a hierarchy of skill levels that develop linearly. However,not all
scholars agree; and it seems difficult to separate interactive from critical
Measures of IHL
Two studies, one from Japan and one from the Netherlands, used
the Functional Communicative Critical Health Literacy scale which measures
frequency of perceived difficulty with tasks indicative of the three levels.
These authors describe IHL as the skills that can be used to participate
actively in everyday situations, extract health information and derive meaning
from different forms of health communication and apply it to changing
circumstances, while critical
health literacy refersto
ability to exert control over health. Among Japanese patients with diabetes,
interactive and critical health literacy, but not functional health literacy,
were associated with self-efficacy, the most important factor in behavior
change. The Dutch authors conclude
that IHL was associated with ability to organize care, interact with healthcare
providers and perform selfcare.
Again, in these
studies interactive/communicative and critical health literacy skill levels
overlap and are difficult to differentiate. Indeed, in psychometric testing,
communicative (interactive) and critical health literacy were closely related
and findings were reported in two categories: functional vs. communicative and
critical health literacy.
Rubin et al describe the
Measure of Interactive Health Literacy,
a 10-minute telephone-administered “performance measure of an
individual’s proclivity to engage in information seeking from health
information sources” For more info, see:
Skill levels or categories? All are needed to protect and promote
Another school of thought — the one I’m in — sees categories of
health literacy skills rather than levels. Individuals or groups combine skills from Nutbeam’s three
categories in different ways for different tasks and situations. Strength in one skill or skill set can
make up for weakness in another.
And a family or community
member can contribute skills that an individual lacks. That’s how health
literacy becomes a community asset.
information that is understood cognitively, is processed socially and
personalized to the particular context and circumstance. Interactive health literacy skills
combine with functional literacy (reading and math) and critical health literacy
skills to empower individuals and communities to use information for health and
gain control over its determinants.
Reference & further reading
Manafo E & Wong S (2012). Health literacy programs for older adults: a systematic
literature review. Health Education Research 27 (6); 947-960.
Sykes S, Wills J, Rowlands G, & Popple K. (2013).
Understanding critical health literacy: a concept analysis. BMC Public Health 13:150
Rubin DL, Parmer, J, Friemuth V, et al. (2011). Associations
Between Older Adults Spoken Interactive Health Literacy and Selected Care and
Health Communication Outcomes. Journal of Health
Communication 16sup3, 191-204. doi:
Ishikawa H, Takeaki T, &Yano E. (2008). Measuring functional,
communicative, and critical health literacy among diabetic patients.
Diabetes Care 31 (5),874-879.
Van Der Heide I, Heihmans M, Schutt AJ, et al. (2015).
Functional, interactive, and critical health literacy:
Varying relationships with control over care and number of GP visits. Patient Education
and Counseling 98 (8), 998-1004.
SNAPW: Improve these behaviors to prevent chronic disease
Smoking, Nutrition, Alcohol,
Physical activity, Weight
find out which providers can improve health literacy for prevention, Australian
researchers completed a systematic review of quantitative studies (What works?)
and narrative synthesis of qualitative work (Why? How?). The review covers
research published 1985 to 2009, much of which was done by US researchers. The
authors focused on “members of the primary care team” —providers working in
general and family practice, community health, home nursing, private or public
allied health, health education, or information— and evaluated their effectiveness in promoting
positive change in health literacy and SNAPW behaviors. The researchers ran into some
issues that I’ve come up against in an ongoing scoping review to discover what is known about the impact of mothers’
health literacy on maternal-child health. Health literacy and related concepts
are poorly indexed, so it is necessary to search on lots of terms. The Aussies
wrestled 4691 papers down to 94. We started with 2600+ and are still wrestling.
There are many varied outcome measures. There are 50+ instruments to
measure functional heath literacy (reading & math) and none to measure interactive
or critical health literacy.
Nonetheless, this research report is on my must-read list.
Take Home Messages
1. Health literacy can be improved; 71% of reviewed studies demonstrated improvement in
health literacy. (A round of
applause for the researchers who published what did not work.) Some interventions improved
health literacy (measured as knowledge, skill, attitude, self-efficacy, states
of change, motivation, or patient activation) without affecting behaviors. This
result supports other findings that knowledge and skill do not necessary
translate to health promoting action; people make informed choices to not
act on what they know.
On the other hand, some interventions resulted in improved behavior
(smoking) without affecting health literacy; that supports previous findings
that specific knowledge may not be a prerequisite for behavior change. One RCT*
found that brief counseling by a physician led to increased patient action, but
only those who were referred to group programs demonstrated improvement in diet
and weight. I suspect that
improvement in one health literacy indicator is insufficient to support
behavior change, which likely requires some combination of knowledge and
skills and motivations and self-efficacy and social
2. Non-physician providers are effective health literacy promoters. Nine of 10
interventions provided by nurses, dietitians, health educators (92%) or
multidisciplinary teams (91%) improved health literacy. Compare that to three
of nine (33%) interventions provided by physicians.
3. Intensity of the intervention seems to be the
difference. One study found the
average length of visit with a primary care physician was 8 minutes shorter
than the time it takes to deliver smoking cessation counseling. Indeed, time
was the barrier to improving health literacy most frequently mentioned
mentioned by providers, followed by attitudes and beliefs. Most
physician-delivered interventions were brief, one-time encounters. In
comparison, interventions delivered by non-medical service providers ranged
from 6 hours to 2 years. Limited time in clinical settings may preclude the
trusting relationship required to support behavior change.
Moderate to high intensity
interventions are needed to address SNAPW behaviors. Production demands in primary care settings (see 30 patients
a day) limit physicians to brief interventions that can increase knowledge and
motivate patient action but rarely result in improved behaviors.
Call to Action
Clinicians: to improve health literacy for
prevention of chronic disease, collaborate with-, refer to- and promote
participation in intensive programs led by other health professionals and
educators, home visitors, community health workers, dietitians, public health
nurses, social workers, case managers, parent educators, program directors:
collaborate with clinicians to integrate health literacy promotion into your
usual activities, organize referral relationships, bridge home and healthcare.
*RCT: Randomized Controlled Trial
Dennis S, Williams, A, Taggart J,
et al. (2012). Which providers can bridge the health literacy gap in lifestyle
risk factor modification education: a systematic review and narrative
synthesis. BMC Family Practice. 13:44. 91 citations. Open Access. Free at http://www.biomedcentral.com/1471-2296/13/44
Health literacy is not just for
Mothers, and the rest of us, use
heath literacy across three domains: disease treatment, disease prevention and
health promotion . We should address those domains in opposite order. If we put
health literacy for enhancing health first, we would have less need to struggle
with disease and treatment.
Most health literacy research has
taken place in US academic medical centers. The focus has been exclusively on
disease treatment. In Australia, they differentiate this narrow
conceptualization as medical literacy. In these lines of inquiry, health literacy is
operationalized as low reading skill in a clinical setting. It is identified by
brief reading tests using medical terms. Since the problem is perceived as
limited reading skill in patients, the solution is to reduce the literacy
demands of medical and insurance information and improve its delivery. The goal is to enable patients to
better manage disease and improve treatment outcomes.
Quality information is essential
for accessible, quality healthcare. But the clinical approach cannot achieve
the national vision of a health literate society . That requires ramping up
the public health model of health literacy.
Health literacy to prevent risk
from escalating to need
From a public health standpoint,
health literacy is seen as a personal and community asset that can be developed
. The asset enables and empowers individuals, families, communities to use
information and services to protect and promote health. This is health literacy
in everyday life.
11 reasons to refocus on health
literacy in everyday life
1. Americans spend about 1 hour per year in a clinical
setting . Health is lost or gained, protected, promoted and managed in the
other 8759 hours at home and in the community.
2. Low literacy is one among many interrelated personal,
systemic, social and environmental factors in patients’ “failure” to engage and
comply with medical care and preventive practices.
3. Poor outcomes are not fully explained by low literacy.
Medical care can be hazardous to health.
In 1999 the Institute of Medicine shocked the nation with its report
that medical errors alone accounted for about 100,000 deaths per year . In
2015, estimates are up to 400,000 deaths annually due to preventable medical
errors— that is 1000+ deaths— plus 10,000 serious complications cases—
resulting from preventable medical errors every day 
4. About 10-15% of early deaths could be avoided by more
accessible or otherwise better medical care. The low potential is not so
surprising since we spend 95%  of our $3 Trillion national health investment
— 16% of the GDP  — on medical treatments.
5. In contrast, about 40% of early deaths are caused by
behaviors . This figure takes on greater significance in light of recent
reports of declining life expectancy among middle-aged Americans.
6. About 30% of early deaths are due to genetic
predisposition , which takes us back to behaviors, which can determine
whether a gene is expressed.
7. Another 15% of deaths are attributed to social
8. The remaining 5% are due to environmental exposures
9. The potential payoff from improving health literacy
for disease treatment is up to 15%. Compare that to a potential 40 to 90% payoff
from improving health literacy for disease prevention and health promotion.
Affordable Care Act is shifting resources to prevention and health
understanding of DOHaD — Developmental Origins of Health and Disease— led the
United Nations General Assembly to recommend all nations work to promote health
literacy [in the public health asset model] as a global strategy to address the
burdens of non-communicable disease .
It is time for Public Health to
Public Health has, especially in the US, with some
encouraging exceptions, approached health literacy in the medical model with
research questions related to the risks of low literacy (reading, math skills)
to potential patients and healthcare systems. Can the public understand when
and how to call 911? disaster preparedness guidance? emergency communications?
health insurance options? Leading public health scholars have argued that
health literacy is behavior change and health literacy improvement can
be measured by changes in a person’s or a community’s actions, practices and
behaviors  indicating increasing autonomy and capacity to produce the
identified consequences of improved health literacy: positive changes in risk
behaviors, selfcare, and health services utilization [1,9]. At least five published studies now
demonstrate the feasibility of directly improving health literacy through usual
health promotion activities: health education, skills development, and direct
information assistance. Groups like Just Health Action are promoting
community health literacy.
have strong theory, available measures, and early evidence. We have a federal mandate, and an
international call to action. We need leadership and resources to build the
science around the public health model of health literacy as a personal and
community asset to be developed.
Because the highest and best use of health literacy is to prevent health
risk from escalating to medical need.
References & further reading
1. Sorenson, K., Van den Broucke, S., Fullam, J., Doyle, G.,
Pelikan, J., et. al. (2012) Health literacy and public health: A systematic
review and integration of definitions and models. BMC Public Health 12:80. www.biomedcentral.com/1471-2458/12/80
2. Nielsen-Bohlman, et al. (1999) Health
Literacy: Prescription to End Confusion, Institute of Medicine.
Nutbeam, D. (2008) The evolving concept of health literacy. Social Science & Medicine 67, 2072-2078.
6. Institute of Medicine (1999). To Err is Human: Building a Safer
McCann, E. (2014). Deaths by Medical Mistakes Hit Records. HealthcareITNews. Free online:
8. United Nations Economic and Social
Council. (2010). Health literacy and the millennium development goals: United
Nations Economic and Social Council regional meeting background paper. Journal
of Health Communication15, 211-222.
Sykes, S., Wills, J., Rowlands, G. & Popple, K. (2013). Understanding critical health literacy: A concept analysis. Biomed Central Public Health:13:150. Open Access: http:www.biomedcentral.com1471-2458/13/150
Zika, the mosquito-borne virus that seems to cause microcephaly (abnormally small head with severe brain damage) has dominated the news this month. In my blog I argued that several governments’ advice to women to avoid pregnancy ignored reality on the ground in countries where access to contraception is limited, abortion is a crime, and women are disempowered. This week the Pope indicated that Zika presents a special circumstance in which Catholics could use contraceptives to avoid pregnancy. Heath ministers, take heed.
Men, wear your rubbers. Even if you have no symptoms
If you have travelled to one of 25 countries where Zika virus is spreading rapidly, or if you are planning to attend the Summer Olympic Games in Rio, stock up on condoms. Get any brand, style, size or type of condom, plus cool posters, key chains and reminders at GlobalProtection.com
Consider visiting the Great Northwest instead of Rio
Public health warnings related to mosquito bites and birth defects intensified this week. Leading national and international health organizations now advise men possibly bit by mosquitos carrying the virus to use condoms. At least three cases of sexual transmission have been confirmed. CDC says, so far, there is no evidence of transmission from an infected woman to a sexual partner. Zika virus has not spread to the US; but experts expect local transmission in southern states. The day-biting skeeters that spread Zika like tropical climates. Local spread is already reported in US territories — Puerto Rico. Virgin Islands, American Samoa. Health officials say there is virtually no risk of Zika coming to Washington state or Canada.
Zika is barely noticeable in adults, devastating to developing babies
Mounting evidence links the Zika virus to microcephaly, usually defined as head size two standard deviations smaller than the mean for age, size and gender. Last week Brazilian researchers found evidence that the virus attacks developing babies in the womb. It seems to target nerve cells causing brain damage and developmental disabilities. Seattle Times health reporter Jonel Aleccia interviewed Dr William Dobyns of Seattle Children’s Hospital after he reviewed brain scans from Brazilian babies. He found an “extremely rare, recognizable pattern” of severe cerebral palsy, epilepsy and feeding problems.
From a health literacy standpoint, “Use a condom” is understandable and actionable. Condoms are inexpensive, readily available, and require no prescription. In some countries, governments are giving away condoms. Earlier, still standing, advice telling women to avoid pregnancy, is understandable but not actionable in Zika-infected countries where women have very limited access to birth control and abortion and little protection from sexual violence.
What to tell a woman who travelled to a Zika-infected area,
or had sex with a partner returning from a Zika-infected country: “See your doctor right away.” CDC recommends that women with symptoms get a blood test, but at this point only a few advanced labs can do the test. It is not known whether babies of women with no symptoms become infected. Knowledge is advancing rapidly. Advice will continue to change. Stay tuned.
pregnant until 2018.
That is the
current public health message from El Salvador’s health minister. Colombian
women are warned to postpone pregnancy for 6 to 8 months. Jamaica just released
similar advice. The intent is to prevent mother-to-baby transmission of Zika.
known since 1947 as a rare mild disease limited to central Africa, is spreading
rapidly across dozens of countries in Latin America and the Caribbean. No one
knows why. The World Health Organization (WHO) warns Zika is likely to reach
every country in the Americas, except Canada and Chili. There is no treatment
or vaccine, largely because only about 20 percent of infected adults have any
symptoms. They might have a headache, body aches, a fever and red eyes for a
Here is the public health concern: in Brazil, since an outbreak of Zika
started there last May, more than 3800 babies have been born with microcephaly,
30 times the expected rate, according to WHO. Microcephaly is a rare birth
defect characterized by a very small head and incomplete brain development
leading to death or lifelong disability. There is little scientific evidence,
but the apparent association between Zika and microcephaly warrants public
health warnings, and delaying pregnancy seems wise. However…
The advice to women to avoid
pregnancy ignores the context in which they are expected to comply. In El Salvador and
Colombia there is little access to contraception, especially for poor rural
women. Abortion is illegal in all cases in El Salvador, where the teen
pregnancy rate is among the highest in Latin America accounting for a third of
all births. Abortion is illegal in
99% of cases in Colombia. In Jamaica, abortion is legal in some cases with the
approval of the father and two medical specialists. There is little or no sex
education in the schools. Sexual violence is prevalent. So women lack the
knowledge, services and power to heed the advice.
Colombia’s health minister explained that
his message to women is a good way to communicate risk. The minister seems to
forget that women do not become pregnant by themselves. No similar messages
have been directed to men. For sure, women who hear the warning will fear
pregnancy and birth defects more than they already do, but left to protect
themselves, this amounts to a “Just say No” campaign. It leaves women
vulnerable to blame for unplanned pregnancy and birth defects in their babies,
and to charges of non-compliance that could be misinterpreted as evidence of
low health literacy.
better message, free of gender bias, understandable and actionable, is to avoid
mosquito bites. CDC has issued Level 2 travel advisories (for all, not just pregnant women) for
the Caribbean, South and Central America, Puerto Rico, Cape Verde, Samoa and
Mexico. Travelers are advised to “practice enhanced precautions”.
In this case,
your doctor before and after travel to areas where Zika is active
insect repellant (safe and effective for pregnant women)
clothing to cover as much of your body as possible
under a mosquito net
doors and windows closed or screened
mosquitos bite in the morning, not just late afternoon and evening like other
lasts only a week or less. The danger is only to a current pregnancy. There is no danger to future
US Centers for
Disease Control and Prevention www.cdc.gov/zika. Information is being updated
effective intervention to improve health literacy in parents, in 2009 leading
US health literacy authors recognized the need to expand medical academia’s
focus beyond reading difficulties. Clearly, intervention to improve health
literacy requires a broadened perspective. Because when the problem is
perceived as reading difficulties, intervention can only aim to make
information easier to read (been there, done that, for decades now), or increase parents’ reading ability
(still no pill for that).
Drawing on research from education, cognitive science and
psychology, Michael Wolf, Terry Davis, Rima Rudd and colleagues proposed a
research agenda to address what they call parents’ “health learning capacity”. In the seven years since its
introduction this added conceptual layer, along with repeated calls for the
field to move beyond documenting patients’ and parents’ low literacy, have not
changed the direction of research. Thought leaders described health learning
capacity, as “the
constellation of cognitive and psychosocial skills from which families must
draw to effectively promote, protect and mange health”. In particular, learning
capacity includes self-efficacy,
listening and speaking, motivation and questioning. This sounds a lot like the World Health
Organization’s 1998 definition which Renkert and Nutbeam (2001) adapted to
describe maternal health literacy as “the cognitive and social skills which
determine the motivation and ability of mothers (parents) to gain access to,
understand, and use information in ways that promote and maintain their health
and that of their children”.
health promotion perspective on health literacy was roundly rejected by health
literacy researchers in US academic medical centers as too broad, messy and
unmeasurable; it “diffuses thinking on the matter”. This may be why the authors presented “health learning
capacity” as a new concept related to reading ability in a medical setting,
rather than suggest adoption of the established broader health promotion
“Health learning capacity” recognizes reading
skill (functional literacy) is insufficient to promote, protect and manage
personal and child health. Proponents call for interventions to improve parents’
psychosocial skills (social and communication skills), which Nutbeam called
interactive skills. Still,
proponents reject the few reported interventions as too broad and continue
seeking a single reproducible strategy to remedy the “true cause” of health
literacy’s effects on clinical outcomes. But a massively multifactorial
capacity like health literacy has no one true cause, and no one true remedy.
Rather, to promote parents’ health literacy we need to find the right
combination of factors that address a particular family’s complex and dynamic “real
life”, not just their ability to communicate with doctors. Further, the
randomized controlled trial is still considered the “true path” to the
discovering the “true cause”. However, the RCT aims to isolate the effects of a
single factor. Where the true
cause is a dynamic combination of personal, social and environmental factors,
an RTC is likely to prove that no single factor works.
Proponents hoped that the idea of health
learning capacity would refocus research on how parents actually obtain process and
understand information. Findings would
better guide continued simplification of information and services. But
reducing barriers for people with low literacy does not improve their health
literacy, it only reduces the need for health literacy.
The still missing research question is how parents use information for health. What enables a parent to transform their
understanding and decisions into desired actions and outcomes? Part of the
answer is what WHO and Nutbeam describe as critical health literacy, the
critical thinking used along with functional and social skills to ask
questions, set goals, make plans, marshall resources, assess progress toward
health and quality of life. The range of health literacy skills: are used
together and all are required to protect, promote and manage health. The health
learning capacity concept expands thinking from purely functional literacy
skills (reading,math) to include interactive (psychosocial) skills, but leaves
out the empowering critical skills.
term, the proposed research agenda calls for education reforms to train more
health literate future generations. This suggestion is at once troubling and
easy. Its troubling because it assumes adults’ reading and other cognitive
abilities are not modifiable in a clinical setting, which means health literacy
cannot be improved — so the only course is to reduce literacy demands in the
system, and hope the children grow up to be more skilled. This underestimates
and disempowers patients and parents. It implies what is needed for the
healthcare system to work is a smarter patient.
The goal of better health education in the
schools is easy. All that is
needed is the political will. The work is done. Health literacy standards and
curricula are already defined. They have been and remain de-funded.
Health literacy as a field is moving away from
describing the problem of low health literacy, toward removing barriers to
understanding health information and services. Intervention to improve parents’ health literacy and
child health outcomes is still hamstrung by focus on parents’ cognitive deficits
and the perception that improvement is not possible.
MS, Wilson EAH, Rapp DN, Waite KR, Bocchini MV, Davis, TC, & Rudd, RE.
(2009). Literacy and Learning in Health Care. Pediatrics124 S3; s275-281.
reading on maternal health literacy improvement
Literacy and Depression in the Context of Home VisitationSmith, S. A., & Moore, E. J. (2012). Maternal and Child Health Journal 16, 1500-1508.
Parents as Teachers Health Literacy Demonstration Project: Integrating an
Empowerment Model of Health Literacy Promotion into
Home-Based Parent Education.Carroll LN,
Smith SA & Thomson NR.
(2015) Health Promot Pract. 2015
Mar;16(2):282-90. doi: 10.1177/1524839914538968.
Epub 2014 Jun 23 www.ncbi.nlm.nih.gov/pubmed/24957219
Health Literacy Progression Among Rural Perinatal Women Mobley S, Thomas S,
Sutherland D, Hudgins, J, Ange B &
Johnson M. (2014). Maternal
Child Health Journal 18: 1881-1892.
Child and Family Outcomes Between Two Home Visitation Programs
Haynes G, Neuman D, Hook C, Haynes D, Steeley J, Kelly M,Gatterdam A,
Neilson C, Paine M. (2015). Family and
Consumer Sciences Research Journal 43 (3):209-228.
Health literacy refers to a person’s ability to use information and services for health. (More definitions)
Using information for health implies three steps:
1) Understanding, that is, decoding the words
2) Making personal meaning, that is, reflecting on the question: What does this mean for me in my situation with my resources, my family, my beliefs, my values?
3) Acting, that is, making choices and turning those choices into desired actions and health outcomes.
These steps coincide with three steps in problem solving,
1) What do you want? For example, a woman decodes information in Beginnings Pregnancy Guide. She understands smoking can harm an unborn baby.
2) What have you got? She acknowledges that she has a pregnancy, and a smoking habit that she enjoys and that relieves stress. She has a husband who smokes and a mother-in-law who smoked through her pregnancy and has a son who turned out fine. She has a budget already stretched, a friend who’s been after her to quit, and a doctor who’s offered some aids. Through self-reflection and discussion with family, friends, experts she makes personal meaning from the information.
3) What’s Next? She makes a choice (decision) not to act or to take action — some small step that she is willing and able to do now to move toward her chosen outcome — a healthy baby, which she understands requires a smoke-free womb.
It is the action (or inaction) that affects the outcome.
The first two steps in using information for health, and in addressing a health problem, are “all in your head”, a purely cognitive exercise with no health effects.
What’s empowerment got to do with it?
Take another look at Step 3 in using information for health: making choices and turning those choices into desired actions and health outcomes. This is the World Bank’s definition of empowerment. And the “Three-Step Dance” is the process of empowerment described by David Emerald in his book The Power of TED* The Empowerment Dynamic.
Empowerment is the act-ive ingredient in health literacy. Without it, it’s all in your head.
“Knowing is not enough; we must apply. Willing is not enough; we must do.” ~Goethe
Note the Goethe quote is typically featured in the front matter of reports from the Academy of Medicine (formerly the Institute of Medicine). It is often attributed to Bruce Lee, but Goethe said it first)
Alsop, R. & Heinsohn, N. (2005) Measuring Empowerment in Practice : Structuring Analysis and Framing Indicators. World Bank. Free online: https://openknowledge.worldbank.org/handle/10986/8856