Beginnings Guides 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 “appropriate decisions”.
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 effectively.
Further, 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 insurance).
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 just print.
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.
The 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 multi-dimensional. Social dimension still missing
HL 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.
Literacy 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 literacies.
Alternative: new improved research approaches
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. http://nam.edu/wp-content/uploads/2016/04/Considerations-for-a-New-Definition-of- Health-Literacy.pdf.
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 disease prevention
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 health literacy.
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 refers to 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 health
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.
Through interaction, 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. doi:10.1093/her/cys067
Sykes S, Wills J, Rowlands G, & Popple K. (2013). Understanding critical health literacy: a concept analysis. BMC Public Health 13:150 doi:10.1186/1471-2458-13-150
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: 10.1080/10810730.2011.604380
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. doi: 10.1026/j.pec2015.04.006
SNAPW: Improve these behaviors to prevent chronic disease
Smoking, Nutrition, Alcohol, Physical activity, Weight
To 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 support.
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.
Conclusion: 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 paraprofessionals.
Health 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
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
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
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
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
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
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
Seeking 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”.
This 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 definition.
“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.
Long 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.
Wolf MS, Wilson EAH, Rapp DN, Waite KR, Bocchini MV, Davis, TC, & Rudd, RE. (2009). Literacy and Learning in Health Care. Pediatrics124 S3; s275-281.
Further reading on maternal health literacy improvement
Health Literacy and Depression in the Context of Home VisitationSmith, S. A., & Moore, E. J. (2012).Maternal and Child Health Journal 16, 1500-1508.
The 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
Maternal 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.
Comparing 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
Can you name
It doubles+ the risk of eight of the ten leading causes of death,
which account for about 75% of the $3Trillion Americans spend on healthcare
annually. It explains half of learning and behavior problems in children. It is
prevalent in all sectors of society, at home and around the world. It meets the
criteria for a public health crisis. Can you name it?
It is ACEs — Adverse
I’ve written here
before about ACEs. I’ve said that anyone
working in maternal-child health, or early childhood education, K-12 education,
child care, chronic disease, or health literacy needs to know about the lasting
destructive power of ACEs.
participating in the 30th Zero To Three national conference held last week here
in Seattle, I understand ACEs are not just another related issue we should
be tracking. It is time to
acknowledge and address ACEs as the biggest barrier to personal and public
health, and to improving heath literacy. As keynote speaker, pediatrician
Nadine Burke Harris says, “ We — all of us — are the solution.”
Work in all
the many fields that aim to build a strong foundation for healthy child
development is futile where ACEs cause that foundation to crumble and leave
children physically, mentally, and emotionally predisposed to impaired
cognitive and emotional development, and to adulthood defined by diabetes,
obesity, heart and lung diseases, cancers. In the context of health literacy, unacknowledged
ACEs must be viewed as a looming barrier to health across the lifecourse, to
literacy, and to effective participation in healthcare and society. It is a
multigenerational problem. A mother with unaddressed ACEs cannot buffer her
child from ACEs.
last a lifetime, for
better or worse, by default or by design. ACEs are the worse-by-default
part that Zero To Three
mantra. By definition an Adverse
Childhood Experience occurs in childhood (< age 18) and the person remembers
it as an adult. Here are the nine
types of ACEs:
* physical abuse
* sexual abuse
* emotional abuse
* mental illness of a household member
* problematic drinking or alcoholism of a
* illegal street or prescription drug use by a
* divorce or separation of a parent
* domestic violence towards a parent
* incarceration of a household member
Why ACEs matter so much for so long
These are more
than unhappy memories. A baby’s brain is only partially (about 25%) developed
at birth so that it can be wired to enable the baby to survive in the
environment into which s/he is born.
Babies absorb everything they see, hear, feel and otherwise experience.
Those experiences tell the brain what to expect and how to be ready for it. By
Baby’s first birthday, brain wiring is 70% complete, by age 3, it’s 85% wired.
So the earlier the experience, the greater and more lasting it’s impact.
repeated ACEs, four or more of the listed experiences, or the same experience
repeated frequently, the brain and all the body systems get stuck on high
alert; living in a crouch, always expecting something bad to happen. The Fight,
Flee or Freeze mechanism is designed as an emergency response system. When danger is past, it is supposed
to switch off so the body returns to a normal relaxed state. When it is stuck
in the On position, little energy and attention are available for learning and
cognitive development. Self-regulation becomes a strident challenge; behavioral
problems ensue. Eventually, the wear and tear of constant stress on the body’s
systems manifest as non-communicable adult disease. The leading causes of adult deaths worldwide have their
origins in early development. In ACEs.
Find your ACE Score:
See how ACEs have affected
you. Use the questions to generate
a reflective conversation with a mother about her ACEs and their impacts on her
life and parenting. Testing shows
the questions do not spur trauma or need for professional help. Download the questionnaire
View Dr. Burke
Harris’ TED Talk
childhood trauma affects health across a lifetime”
Next: How we can
use information about Adverse Childhood Experiences
Health Literacy: An economic issue
In the US, literacy has long been addressed as an economic issue, a pre-requisite for a
productive workforce in a competitive global economy. Some scholars argue that political campaigns to address
adult low literacy have been undertaken repeatedly in the US and elsewhere to
explain or distract from economic downturns, most recently in 1991 by GH Bush., That campaign produced the
the 1992 National Adult Literacy Survey. Results led academic medical
researchers to discover a glacier in their backyard — the
fact that few Americans understand information from doctors or insurers. The first health literacy studies in the medical literature
came out in 1993.
literacy as an explanation for national economic woes extended to patients' low
literacy as an explanation for low quality, high costs and inequities in
healthcare. Health literacy
was understood as low functional literacy (reading and numeracy) in a clinical
setting. The thinking went like this: if patients could read better, they would
better understand their disease and treatment instructions, and so comply.
Outcomes would improve and we would avoid unnecessary expenses like ED
visits, re-testing and
re-admissions. That thinking led to much needed information-improvement
High demands of complex systems increase negative impact of
Recent policy documents acknowledge patient's ability to
understand and use information for health is determined not only by their
personal skills (or lack of them) but also by the demands and complexities of
healthcare systems  . That recognition is leading to initiatives to redesign
services and remove barriers to access and participation.
Literacy: A health issue
In a new leap forward in thinking about HL, the National Academy
of Medicine (formerly IOM) has released a discussion paper suggesting that a
person's HL is also determined by the demands and complexities of their home
and social context.  This makes HL a public health issue, a pre-requisite
for an equitable health system, and
key to reducing health disparities.
Healthcare organizations should lead adult & family literacy efforts
It is becoming clear that literacy is not just an economic issue,
but a matter of personal and public health. There is no getting around the fact
that health and literacy are inextricably linked. More literacy — more health, and more health
literacy. In communities where low
literacy is the norm, where high school graduation rates are low and schools
are poorly funded —these are the same communities with
high incidence of asthma, diabetes, cancers—, healthcare
organizations should establish, house and and actively support adult literacy
and family literacy programs. High returns can be expected from a relatively
low investment. Such a program can make good use of facilities that typically
are vacant in the evenings and on weekends; and provide good marketing
opportunities while building the community's capacity for health and making
participants more prudent healthcare consumers. A healthcare-based literacy program that incorporates health education and
health literacy improvement can make everything easier and more efficient for
the participants and for the organization that provides their healthcare.