Beginnings Guides Blog
"In any situation, a person decides what to do
based on an understanding of facts, issues, options for action, and
." So says PlainLanguage.gov
. Oh, would that it were so! This
premise that individuals needing medical care are rational consumers is, in
in healthcare is not like buying a car.
When it comes to healthcare decisions, understanding the
medical facts and treatment options and consequences often requires an advanced
degree, specialized vocabulary, internet access and research skills. The
"facts" — like the
definition of health literacy — are likely to
differ by who you ask. Well-established medical facts change along with rapidly
developing knowledge and technology.
The price of treatments, and whether and how much insurance will cover,
is usually unknown by both service provider and consumer until after the
fact. The medical, personal and
social consequences of a disease or treatment option are in most cases
predictable only by what seems to have happened to other people in other
families and circumstances. So if
it were true that we humans base our health and medical decisions and actions
on objective rational logic, few such decisions could be made.
healthcare, where issues and consequences are intensely personal, often
embarrassing, frightening, financially devastating, and far reaching,
decision-making and behaviors are more often based on a mix of emotions,
insurance status, immigration status, cultural or religious beliefs, trust or mistrust of providers or
government, practical considerations like availability of transportation…the
list could go on and on.
Knowing is not enough; we must apply. Willing is not
enough; we must do. ~Goethe
This flawed view of individuals as rational consumers of
health services separate from the context of their everyday lives supports
another convenient but equally flawed notion: If people just had more or better
information, they would make appropriate decisions and adopt health promoting
presents this as
the theoretical foundation for the Ask Me Three
[questions] campaign. That may be a good conversation starter.
Still, seeing patients as rational consumers who ought to
lead discussions about their care places the "health literacy
problem" (high costs, disparate outcomes, inefficiencies and inequities)
squarely on the patient. If we are to achieve the national vision
of a health literate society, rather
than expecting individuals in need of healthcare services to learn medical
terminology and disease information, healthcare professionals must learn to
communicate effectively with people who have not gone to medical school. Rather
than insisting that patients re-arrange their lives, become researchers and
care managers, and endure all manner of inconvenience to comply with overly
complex treatment regimens, healthcare delivery professionals must adapt
treatments to the realities of everyday life.
Howard K. Koh, Donald M. Berwick, Carolyn M. Clancy,
Cynthia Baur, Cindy Brach, Linda M. Harris and Eileen G. Zerhusen. New Federal
Policy Initiatives To Boost Health Literacy Can Help The Nation Move Beyond The
Cycle Of Costly 'Crisis Care' Health Affairs 31, no.2
(2012):434-443(published online January 18, 2012; 10.1377/hlthaff.2011.1169)
I share this
story with the permission of it’s
author, Michael Joe Harrison. Michael was on my
first date with Larry, now my
husband of 37 years. Larry was Michael’s volunteer big brother
through Big Brothers Big Sisters
of Virginia. He was 15, a long-haired foul-mouthed certified
Delinquent. Long story short, we all got out of VA; Larry & I, my daughter Lisa and
Michael became a family
Seattle. Michael quickly adopted the role of loyal protective big
brother. At 18 he went back East, reunited with
his sister, finished school, married, established
a business, raised a family,
and became the one his relatives turned to when their kids got into
When Lisa got married, we offered her any gift she could imagine - she wanted
in her wedding. Now a grandfather, musician, business owner in Georgia,
and still very much part
of our family,
Michael reflects on fatherhood in this from his Facebook page.
Just like my
Roughly 14 years
ago, most all the trees in the front yard I planted. Each one planted
a loved one. Specifically today, would like to talk about the ones
planted for my children, Jennifer
Manor, Chris Bradley and Kim Harrison.
When I planted
these trees, they were young. I feed and watered them, pampered them hoping
they would grow tall and strong. Just like my children.
started to grow, there roots grew deep to provide a strong foundation to stand
took a little time but slowly they anchored themselves and could hold
their own. Just like my children.
spread, helped provide shade on hot days. Their branches provided shelter and
families grew from their branches. Just like my children.
branches broke. I would worry that if too many broke, I would lose them. New
grew and the trees were more resilient, wiser if you will. Just like
Each tree is
different. None are the same. This means they grew and matured at different
Their leafs and blooms grew and fell at different time. Each one is
unique. Just like my children.
These trees have
weathered many seasons. They would grow new leaves every spring. Survived the
bitter cold and survived life’s stormy weather. Just like my children.
We all moved
away. I could no longer pamper them. They had to stand on their own and they
They are strong, healthy and their leaves provide air which breath life to
all. Just like my children.
Which one is my
favorite? Well I can’t answer that. Each one has their history. Each one was
with love equally. Along the journey, each one has special memories and
stories. Just like my children.
To say I am proud
of these trees, I am. Actually I love these trees. Love comes in many forms. It’s
been a wonderful experience to watch these trees to grow and mature. So yes I
do love them.
Just like my children.
In a recent meeting to discuss online searching for health
information, Rachel was introduced as a
UX writer for Google. Mystified, I
googled her job title. Turns out UX is short for User Experience. A
is first an advocate for the user of information. Rachel does not think
readers who need to process and understand information
and gain knowledge. Rather, she
useful, meaningful text that helps users complete the task
Imagine how information from health care organizations would be
different if producers and reviewers
aimed not to educate patients with low
literacy, but rather to "simplify and beautify the user experience"
of obtaining treatment, using medications, or navigating facilities. Imagine if we wrote not for "low
patients", but for an information user assumed to be competent, although
unfamiliar with the
content and context.
What if we regularly used empathy along with logic and hard data to
choices? What if we worked closely with teammates from a variety
Rachel writes about Google software products. Elsewhere, her
position might be titled technical writer.
What differentiates her from technical writers, and most
health information producers, is her intent to
improve the users experience,
instead of intent to improve the information. Another essential differentiating
factor is that Rachel the
UX writer assumes users of the info she produces will have different levels of
proficiency, background knowledge, and experience. She does not require them to
learn a new vocabulary.
She does not demand reforms to public education to
increase computer literacy so that people can benefit
from her products and
services. Rather she enables them
to use her information with the skills they have.
A UX mindset would transform health information and the process
of health education.
A UX Writer's job
description would be a good starting place to describe a health literacy
specialist or health
educator position. Find one here.
producers should be less concerned about healthcare consumers’ lack of literacy
skills and more
concerned that we are all “limited-capacity
"In any situation, a person decides
what to do based on under-
standing of facts, issues, options
for action, and consequences.”
This statement from an article titled “Improving
Health Literacy” at
bound to set information providers and health literacy
promoters down a dead end. It describes
decisions ought to be made. We hope and
trust that healthcare professionals use this conscious,
analytical, linear, reasoned process for treatment decisions. Consumers do not.
decisions are based on emotion
are much more likely to use what experts in decision-making processes call an
“experimental” approach that is intuitive,
automatic, associative and driven by emotions. It is
feelings that make meaning from information and
motivate actions. Because we can only use a
limited amount of information, we
consumers automatically search for info that warrants our
attention and info we
can disregard. Health decisions typically are complex and require complex
information on unfamiliar topics,
using unfamiliar terms and concepts. More info requires more
time and energy and often yields
more uncertainty and competing messages. Even otherwise
consumers may limit information seeking and almost certainly disregard available
information that is hard to use when physically, mentally, spiritually and
financial stressed by illness.
The value of plain language information in a
simple form is that it makes information easier to use so
that consumers do not
have to use short cuts.
Plain language information is necessary
but insufficient to improve health literacy. It needs to be
make decision-making, rather than reading less cognitively and emotionally
It needs to come with direct support to help people process the info
based on their specific needs and
the everyday home context in which they are
expected transform decisions into actions and outcomes.
Healthcare: The burden of choice. (2005). Shaller,
D. California Healthcare
Oakland. Online at http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/C/PDF%20ConsumersInHealthCareBurdenChoice.pdf
The Adaptive Decision
Maker. John W. Payne, James R. Bettman and Eric J. Johnson, Cambridge:
University Press, 1993,307 pp. ISBN 0 521 41505 5 (hc), ISBN 0 521
42526 3 (pb)
In Florida, if someone scares you
to death you can legally shoot them to death with your BLEEP. But your
family doctor or
pediatrician or health worker cannot legally ask you if a BLEEP is kept in your
house or how
it is stored.
Apparently even thinking about the
risk of unsecured BLEEPs to their children’s and
right to keep BLEEPs anywhere and any way
they want. This BLEEP has been
since 2011. (The part that made asking about BLEEPs a felony with
jail time and a $5 Million fine did not pass).
Physicians groups challenged the
law. It was upheld as constitutional in Florida since BLEEP ownership and
is a private matter unrelated to medical care.
BLEEPs and tobacco are the only
products on the market that when used correctly kill people; BLEEPS kill lots
of people, often children, in a seconds.
So BLEEPS can’t be a private matter.
Safety Checklist for a Crawler:
BLEEPS are unrelated to medical
care until a child -or some one
else- or the owner- is injured by the patients’ BLEEPs. Then
taxpayers fund emergency response and
medical care for totally
preventable horrific injury or death, and related
increased insurance premiums, and lost contributions to
And we live in fear…. Oh, I see, if you live in fear - get a BLEEP.
Texas legislature entertained a similar gag rule this month.
Death in the United States:
A Call to Action From 8 Health Professional Organizations and the American Bar Association.
Ann Intern Med. 2015 Feb 24. doi:
10.7326/M15-0337. [Epub ahead of print]
Ferrris S. Children’s Defense Fund report on Childs’ BLEEP deaths, new BLEEP laws Data analysis: More
preschool kids dead from BLEEPfire than
police. May 19, 2014
Walters, E. Bill Would Prohibit
Doctors From Asking About BLEEPs. The Texas Tribune March 18, 2015
Pitts, L. Republican list of things you cannot say.
Seattle Times March 19, 2015
I’m proud of my city. We are catching up
with the rest of the world.
Yesterday Mayor Ed Murray announced Seattle will provide paid
parental leave for City employees.
All parents — foster parents, adoptive parents,
mothers and fathers— will have the option to take four
weeks off —with pay— to bond with a new child. The mayor is encouraging other
employers in the state to offer similar benefits.
This should not be the surprise, the bold move, the
breakthrough that it is.
The US is the only developed country on the planet that does not
give new parents paid time off to support attachment and bonding and infant
brain development, and to put their newborns on a positive health trajectory.
President Obama announced a similar new
policy to provide six weeks paid parental leave to federal workers in
his State of the Union address.
A step toward gender equity in the workplace
I’m especially glad the paid leave
policy will apply to fathers as well as mothers. That presents child care as a
shared responsibility. It puts to rest arguments and unfair choices that have plagued so many women’s
career…You are on the mommy track, so you can’t
be on the partnership track. The paid leave policy protects mothers’ earning
potential, avoids unfair expectations and burdens and removes that awful choice
between career and family.
Most of all, this investment in parents shows we are a society
that values its children, including adopted children and those in foster care.
It shows respect for the role of fathers in raising children, and the role of
mothers in the workforce. It
acknowledges the contributions of
foster parents — special people who can love other
people’s children as their own, and encourages
foster parenting. Thank you Mr Mayor and Mr President for leadership toward a
stronger city, region and society.
is teen dating abuse awareness month.
Throughout the month of February, teens
and organizations across the country have been working together to raise
awareness about teen dating violence.
As a dating abuse prevention educator February is my busiest month
(which is why it has taken me so long to write this blog). Every week I visit
the schools in my community to discuss dating violence, healthy relationships
and how to recognize warning signs. I speak with students from 7th grade all the way through college about their experiences. I am proud of what I
do and I am grateful to work in a community that considers these issues
important enough to discuss with our children all throughout they year. I wish
I could say the same for the community I live in. Not every district or county recognizes the importance of
discussing healthy relationships, which is shocking
considering the statistics (see below). I have tried on more than one occasion
to bring presentations similar to the ones I do in other communities to my
son’s school to no avail. The
question is why aren’t some schools or some communities talking about dating
The simple answer is, it is not an easy
subject to talk about. We are taught to ignore or to stay quiet when we see
signs of abuse. We are not encouraged to talk about abusive behaviors in
relationships. If you are parents, it's even more challenging to open a
conversation with your child about relationships. Where do you begin, and at
It is important to recognize that dating abuse affects
everyone. It knows no boundaries and crosses all barriers. It can and does
happen to anyone, at any time at any age all around the world. The repercussions
are far-reaching and impossible to ignore. According to loveisrespect.org violent relationships in
adolescence can have serious ramifications by putting the victims at higher
risk for substance abuse, eating disorders, risky sexual behavior and further
domestic violence. It affects
children, their families, their schools and their communities.
It can be difficult to talk to your children or a young
person in your life about relationships, dating and especially sex but if you
don’t, who will? We must talk to our youth about how to recognize warning
signs, what a healthy relationship looks like and where to get help. Talk to them and listen to what they
have to say. If you don’t know where to begin, I have listed resources for you
below as well as some statistics.
deserves a healthy relationship. Not everyone knows what that looks like
(especially when they are looking to the media and culture for examples but
that is an entirely separate future blog post) so it is up to us to begin the
conversation. Reach out to your local agencies; see if they can bring someone
in to the schools to reinforce what you are teaching them at home. We can raise
awareness, we can prevent violence in relationships and we can do that one talk
at a time.
Did you know:
1 in 3 teens in the U.S. is the victim of physical, sexual, emotional,
or verbal abuse by a dating partner, a figure that far exceeds other types of
Girls and young women between the ages of 16 and 24 experience the
highest rate of intimate partner violence (almost triple the national average).
Violent relationships in adolescence can have serious ramifications by
putting victims at higher risk for substance abuse, eating disorders, risky
sexual behaviors, and further domestic violence.
Eighty one percent of parents believe teen-dating violence is not an
issue or admit they don’t know if it’s an issue.
One in three adolescents in the U.S. is a victim of physical, sexual,
emotional or verbal abuse from a dating partner, a figure that far exceeds
rates of other types of youth violence.
One in 10 high school students has been purposefully hit, slapped or
physically hurt by a boyfriend or girlfriend.
One quarter of high school girls have been victims of physical or
Approximately 70% of college students say they have been sexually coerced.
There are many organizations doing incredible work focusing
on relationship violence awareness and prevention. These are a few of my
US residents speak at least 329 languages. In some US cities less
than 60% of the population speaks English. About 32 million of us speak a
language other than English at home. If your service population is not diverse
now, it will be soon. Pew Research
projects the US Spanish speaking population will triple by 2050, and the Asian population will double. Success
in improving the health of ethnic populations will substantially influence the
future health of America as a whole.
Healthcare organizations have been working to develop their
capacity to address language barriers and cultural differences, but it’s
hard to make progress when the challenge is increasing along with the
complexity of treatments and healthcare delivery and financing systems. Non-English speakers still face substantial communication barriers at almost every
level of the health care system.
show that communication barriers have a negative impact on health, discourage
use of preventive services, and increase costs of treatment through unnecessary
testing, delayed diagnosis, extended treatment times, and misinterpreted
instructions. Without information that they can understand and use in their
everyday lives, patients cannot engage in self-care or self-management. In
short, they cannot take responsibility for their health and be partners in treatment,
as effective care now requires.
In most cases, provider
organizations and insurers have the means to overcome language barriers. But
current practice in most communities still reflects an assumption that it is
the patients' obligation to make themselves understood, to ask appropriate
questions and to correctly interpret and comply with instructions. In most
instances, this assumption is wrong as a matter of law. Federal and state civil
rights laws and Medicaid regulations require access to linguistically
appropriate care. These laws are the basis for accreditation standards that
require providers and insurers to position themselves for our multicultural future.
Studies show that print
materials, particularly in combination with brief counseling, can increase
recall, compliance, and behavior changes; and reduce consultations regarding discomforts
that could be self-managed. Health information is increasingly available and
accessed online, through mobile devices and virtual patient educators. Still a
clear message from research participants
is that written information should always be available, even in the
presence of multiple other media.
While they are not a total
solution, CLAMs remain the necessary foundation for a comprehensive
communication effort, and an obvious starting place to promote health literacy.
Organizations serving diverse populations will need to hone a process to
develop and test English language materials, and to adapt essential proven
materials for non-English speakers.
More on that next time. Stay tuned.
Previously in this space, we talked about the identified consequences
of health literacy.
I argued that the documented presence of those
consequences in a mother’s (or other’s) life would be
evidence that she possesses and
used health literacy skills to produce those consequences. Now we look specifically at critical
health literacy and its consequences.
Nutbeam (2000, 2008) followed literacy scholars Freebody and
Luke (1990) to name levels, or, more accurately, categories of health literacy:
functional/technical skills (ability to read and use numbers);
interactive/social skills (listening, speaking) and critical health literacy,
critical thinking skills that enable a person to apply information in new
circumstances (Nutbeam 2000) in one’s own life (Kickbush 2001).
While critical skills are commonly considered advanced or higher
level skills, some literacy scholars (Charner-Laird, Fiarman, Park, Soderber & Nunes, 2003)
have argued that critical
thinking, especially reflection, is so essential to making meaning from
information and using it in context, that it should be considered a basic
skill. They describe reflection as the “mind’s strongest glue” for making
connections essential to understanding any subject. Maternal health literacy includes all three
categories of health literacy skills, which mothers use in various combinations
according to the task and the context. Strong skills in one category (say
listening and remembering) can compensate for lesser skill in another category
Is Critical Health Literacy different from Health Literacy?
Sykes and colleagues (2013) wanted to know if critical health
literacy is really different from associated concepts like health literacy and
empowerment. So they analyzed the literature on critical health literacy and
interviewed UK health literacy experts. They concluded that critical health
literacy is indeed a unique concept differentiated from related concepts by its
consequences: confidence or self-efficacy, improved quality of life, increased social capital, and improved health outcomes. The unique consequences of critical
heath literacy suggest that critical thinking is the active ingredient in
health literacy that leads to action and outcomes. This adds weight to our
operating theory at Beginnings Guides and the Center for Health Literacy
Promotion that reflection is a key lifeskill for mothers taking responsibility
for family health.
The Active Ingredient in Health Literacy: critical thinking
My friend and colleague, home visiting expert Linda Wollesen
has been saying for decades that mothers make progress when home visitors,
parent educators (I’ll add patient educators and health
educators) stop giving answers and instead ask questions that make mothers
think. In the process of working out answers to reflective questions mothers
learn to look objectively, critically at a situation to make sense of it and
choose a purposeful response, to formulate their own questions for information
seeking, to interpret information and use it for practical purposes in their
Basic health literacy, described as reading and numeracy skills
used to understand basic information needed to make appropriate health
decisions (Monday I will quit smoking) is insufficient to affect outcomes.
Action is required for outcomes, often sustained and difficult action. And
critical thinking skills are required to plan action, progress in the face of
barriers, and produce desired outcomes. So to be health literate, mothers and
others need skills in all three categories: functional, interactive and
critical health literacy. And the greatest of these is critical health literacy
— thinking skills to respond intentionally to the health
challenges and opportunities of everyday life.
Nutbeam D. (2000)Nutbeam, D.
(2000). Health literacy as a public health goal: a challenge for contemporary
health education and communication strategies into the 21st Century. Health
Promotion International, 15, 259267.
Nutbeam, D. (2008). The evolving
concept of health literacy. Social Science & Medicine, 67, 2072-2078.
Literacy: addressing the health and education divide. Health Promotion
International 16 (3), 289-297.
Sykes S, Willis J, Rowlands G
& Popple K. (2013). Understanding critical literacy: a concept analysis. Biomed
Central Public Health:13:150. http:www.biomedcentral.com1471
Let’s welcome the new year with some new
thinking about measuring health literacy.
It’s hard to say exactly what electricity
is, but if the lights are on, we know we’ve got it. And we
measure electricity by the light it produces. So it is with health literacy. It
is hard to say just what health literacy is, but we know it by its
consequences, and we can measure those consequences.
Services utilization, behaviors, self-care
Two recent systematic reviews and concept analyses (Sykes 2013,
Sorenson 2012) identified the consequences of health literacy. Both studies found the most frequently
reported consequences of health literacy are improved use of services,
behaviors, and self-care. These consequences reflect how people use their
health literacy skills in everyday life and what they actually do for health with the information and
support available to them.
Although these consequences are supposed or anticipated rather than
evidence-based (Sykes 2013), the documented presence of these consequences
would indicate that the person possesses and has used health literacy skills to
produce them. Studies using the Life Skills Progression instrument to assess
maternal heath literacy are building the evidence base.
The LSP Maternal
Health Literacy Scales rate mothers health literacy by their health and
healthcare-related actions practices and behaviors. Sequential measures show
change —improvement or regression. The LSP Healthcare Literacy Scale uses 9 items to rate
mothers’ use of information, emergency services, medical and dental
care and preventive services for herself and her child. The Selfcare Literacy
Scale uses five items to assess risk behaviors and selfcare practices. Three published studies using LSP data on three different cohorts
of mother-child dyads provide
evidence that mothers supported by home visitors trained to promote maternal
heath literacy produced the consequences of health literacy at increasing levels
over 12-18 months. So the recent
analyses of the consequences of health literacy confirm earlier findings that
the LSP can be used as meaningful
measure of MHL.
Next: the recently identified unique consequences of critical
health literacy add weight to our theory that critical thinking skill,
particularly reflection, is the active ingredient in health literacy that enables mothers (and others) to
transform their decisions into health promoting actions and outcomes. Stay
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
S, Willis J, Rowlands G & Popple K. (2013). Understanding critical
literacy: a concept analysis. Biomed Central Public Health:13:150.
Smith, S. A., & Moore, E. J. (2012). Health literacy and depression in the context of home visitation. Maternal and Child Health Journal, 16, 1500-1508.
Carroll LN, Smith SA & Thomson NR. (2014). The Parents as Teachers Health Literacy Demonstration Project: Integrating an Empowerment Model of Health Literacy Promotion into Home-Based Parent Education. Health Promotion Practice
pii: 1524839914538968. [Epub ahead of print]. Available on Internet at: http://hpp.sagepub.com/content/early/2014/06/23/1524839914538968.abstract
Mobley S, Thomas S, Sutherland D, Hudgins, J, Ange B & Johnson M. (2014) Maternal Health Literacy Progression Among Rural Perinatal Women. Maternal Child Health J 18: 1881-1892.