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Running head: PATIENT EDUCATION MATERIALS AND LITERACY 1
Patient Education Materials and Literacy
Derrick Dougherty
National Louis University
PATIENT EDUCATION MATERIALS AND LITERACY 2
Abstract
Every year many lives are lost due to ineffective healthcare instructions. Most of the time
these deaths are unintentional and a complete accident. Healthcare providers are often depleted
of energy, time, and resources, which leads to an inadvertent lack of patient education. Often
times, patients are unable to read the instructions, understand the instructions, or do not want to
ask questions out of fear or shame. This is especially true in the emergency departments and end-
of-life directives. The emergency department is a place of constant chaos, and often patient
instruction falls through the cracks. Geriatric patients are often confused when they are presented
with end-of-life advance directives, which they sign because they are told to by family. Through
the research completed in this paper, it is shown that steps are being taken to improve patient
education materials, however, it appears to not be enough.
PATIENT EDUCATION MATERIALS AND LITERACY 3
Patient Education Materials and Literacy
“Health literacy is defined as the degree to which individuals have the capacity to obtain,
process, and understand basic health information and services needed to make appropriate health
decisions.” (Mayer & Villaire, 2009) Many people often are not able to understand medical
terminology, and subsequently, patient education materials. Patient education material is written
by physicians to a level at which they believe enough information has been communicated to be
able to provide self-care. Patients often feel they understand their medical instructions, however,
when they need to perform self-care they are unable to understand the instructions. Often times
this inability to understand is not an overabundance of complex medical terminology, but a lack
of general education. This issue can be solved by revision of patient education materials. It can
also be solved by involving patients in what is necessary for them to care for themselves. One of
the easiest ways to solve the issue is by using a standardized reading level of patient education
materials, so that no person is ever left feeling scared about their care and what they need to do
to improve their health. A large amount of the population has a lower reading level than is
necessary to read patient instructions. Nielsen-Bohlman, Panzer, & Kindig (2004) even dispute
that advance reading skill will understanding, stating “Neither a high school education nor
advanced reading skills guarantee that a person will understand health information.” (as cited in
Mayer & Villaire, 2009) Even with the improvement of the reading level on medical material,
patient education materials continue to fall short of the national standards and the necessity of
understanding needed for proper self-care.
One of the main factors of medical education materials misunderstanding is lack of
education. According to Kirsch, Jungeblut, Jenkins, & Kolstad (2002), over 40 million adults are
functionally illiterate and another 50 million have insufficient reading skills. (as cited in Ryan et
PATIENT EDUCATION MATERIALS AND LITERACY 4
al., 2014) 90 million people lack the proper reading skills that may be called upon to read
medical education materials. These people feel shame or embarrassment due to their lack of
reading ability, which causes them to not ask for assistance in understanding of the materials.
This lack of understanding can cause repeat hospital visits, further patient injury, and unknown
medical complications. This, in turn, creates higher hospital expenditures and a revolving pattern
of involvement with healthcare services. According to Ryan et al. (2014), healthcare systems
continue to develop and use educational materials that are not appropriate for many of the
patients and families that they serve. One of the materials Ryan et al. (2014) reviewed showed a
picture of a brain with much more detail than what the patient needed. When determining the
suitability of patient education materials, it must be approached as if the person has absolutely no
knowledge of the topic for which they are reading. Physicians write patient education materials,
and they are far above the necessity to assist the patients in proper self-care.
Tamura-Lis (2013) asserts, “one of the most promising and successful, evidence-based
methods of patient education is the Teach-Back Method.” She also states, “Educated patients are
able to manage their medications, fully participate in their treatments, and follow protocols to
achieve the goal of safe quality care.” This method asks the patient to “teach-back” what they
have been explained or what they need to know. Teach-back should be used whenever a patient
needs to be educated. (Tamura-Lis, 2013) The Teach-Back Method ensures that a patient
understands and is able to follow the instructions that have been explained to them. Utilization of
the method eliminates the majority of misunderstanding because if the patient doesn’t
understand, the information is explained again in a different way until understood. This method
is used in many different situations. When babies are taught new ideas, a parent has them repeat
back what was just taught to them. It is a way to call on the brain to instantly remember
PATIENT EDUCATION MATERIALS AND LITERACY 5
something, and force it to put what was said into long-term memory rather than only in short-
term memory.
Agarwal et al. (2013) evaluates the quality of online patient education materials for
rehabilitation following neurological surgery. The main issue with online patient education
material is that it is often unreliable, or unqualified persons create the material. Often the online
material is above the majority of Americans reading level, which Vives, Young, & Sabharwal
(2009), state is between seventh and eighth grade. (as cited in Agarwal et al., 2013) Agarwal et
al. (2013) finds that rewriting online education materials to effectively communicate with the
general population would be beneficial. This, as mention before, would mean that the material
would need to be rewritten at an eighth grade level or below. Agarwal et al. (2013) found that the
websites of the National Institute of Neurological Disorders and Stroke, U.S. National Library of
Medicine, American Occupational Therapy Association, and the American Academy of
Orthopaedic Surgeons were written at levels that may be too complex for the average American,
thus warranting revisions and improvements. These websites are among some of the most
influential and trusted websites, however, they are written at a level about much of the American
reading level. When a person visits a reputable site to get information, but they are unable to
understand what they are reading, they look for other sources. This is usually when that person
resorts to the less reliable websites that provide easier to understand, but are often incorrect
information.
The development of patient education material is a difficult task, but once the material is
developed, it must be evaluated. There must be an education needs assessment performed prior
to developing patient education material. Ruffin (2010) evaluated phototherapy patient education
materials and found several shortcomings. She also discovered that there were not enough
PATIENT EDUCATION MATERIALS AND LITERACY 6
brochures to mass distribute and the written material often as recommended 5th grade level. Once
new patient education material is developed, it is evaluated using a particular algorithm. Ruffin
(2010) pointed out that after redevelopment of patient education materials, only around 7%, had
difficulty understanding the new material. In Ruffin’s (2010) study, it was found that the new
educational materials met the needs of the patients. However, the evolution of patient education
materials must be in a state of constant change. The materials must constantly be reviewed for
proper effectiveness and understanding, as well as correlation with current medical innovations.
The lack of revision is often what causes issues with patient education materials, because more
has been learned about certain medical ailments. Further knowledge about an ailment means that
the patient education materials must be revised, however, they often are not. This harms the
patient and leads to return visits to a healthcare facility, when the knowledge to keep them at
home was there, but just not printed.
Additionally, McCarthy et al. (2012) finds that print instructions are not written at
appropriate reading level and emergency department (ED) patients frequently do not understand
their discharge instructions. The complications in the emergency room are two-fold. The ED
staff is often overworked and understaffed, while the patients are often experiencing the worst
day of their lives. These complications lead to lack of communication, lack of instructions, and
overlooked patient education. McCarthy et al. (2012) asserts that the reduction of reading level is
an important step; however, it is not enough. They go on to recommend the minimizing of text is
the best route. Simple language is often used to determine the development of new patient
education materials. However, McCarthy et al. (2012) found the difficulty using simple language
is that healthcare professionals find it hard to understand. This discovery means that there has to
be appropriate material that is understandable by the patients, as well as the healthcare providers.
PATIENT EDUCATION MATERIALS AND LITERACY 7
McCarthy et al. (2012) also identified that visuals placed appropriately help explain the text and
stress important points. The use of visuals can be extremely helpful. This is because many people
are visual learners and find it easier to learn when looking at a picture. However, visuals can
often crowd a page and if not used properly, they can be distracting. Once implemented,
McCarthy et al. (2012) will use their documents as a foundation for comprehensive discharge
instructions. A study conducted by Alberti & Nannini (2013) evaluated patient comprehension of
discharge instructions from the ED or urgent care (UC). According to Alberti & Nannini (2013),
comprehension of discharge instructions is critical; this comprehension comes from the patient-
provider relationship. They continue by saying that simplification of material is paramount in
achieving comprehension.
Nurit, Bella, Gila, & Revital (2009) directly evaluated patient knowledge regarding
medication following a nursing intervention project on patient medication education. During the
study, 84-93% of patients received explanation of medication. Medication education is a very
important aspect of patient education, which is often overlooked. Most healthcare practitioners
don’t provide a complete explanation of medication. This is due to the misunderstanding that the
patient needs the medication, so they will take it based off of the ailment they are experiencing
without much further explanation. Medication education should include many aspects of the
medication such as: side effects, drug interactions, and frequency and dosing. Often times as
stated in Nurit et al. (2009), under-use of the tool (questionnaire) by nurses was caused by lack
of time, workload, and patient education not being their top priority. The study also found there
needs to be more emphasis on the nurse’s role as the medication educator. Nurses often work
long hours and have a very heavy workload. This is where the issues appear due to the workload
and time management.
PATIENT EDUCATION MATERIALS AND LITERACY 8
Cognitive load theory holds that an individual’s capacity to process information is finite.
(Pusic et al., 2014) This theory essentially means that there is only a certain amount of
information that a person can process before the remaining information coming in is no longer
processed appropriately. Pusic et al. (2014) states that healthcare providers will occasionally
provide verbal information when it should be provided in written form. This is often caused by
the lack of time. It is easier to rapidly explain an instruction, than to print off and then explain
the handout to a patient. The patient should control the flow rate of new information. (Pusic et
al., 2014) In the fast paced medical environment, clinicians, unfortunately, rush through
information sharing sessions with patients. This helps the clinician with moving to the next
patient, however, the patient is the one that is hurt by the rapid instruction session. Often times,
this causes the patients to return to the clinician or change clinicians because they don’t feel they
had adequate care provided to them by someone that honestly wants to help them be better.
Decreasing extraneous cognitive load enables the learner to use their limited resources to focus
the intrinsic load of the concepts to be learned. (Pusic et al., 2014) Removing unnecessary
information from patient education materials allows for better learning by the patient. Presenting
information using words and graphics will increase the uptake of information. (Pusic et al., 2014)
The use of multiple approaches to patient education allows for a larger possibility of patient
understanding. Verbal, written, and visual educational material by themselves are great in the
facilitation of patient education. However, all these methods used in a single interaction with a
patient allows for a more thorough understanding of instructions. This method can add to patient
contact time, however, keeping patients from returning to a clinician for the same ailment
reduces costs and time in the long run. Presentation of the words and graphics simultaneously
will make a dual pathway connection, which will allow for a connection between the two. (Pusic
PATIENT EDUCATION MATERIALS AND LITERACY 9
et al., 2014) Using visual methods to present visual concepts will aid in explanation and will
result in increased patient understanding. (Pusic et al., 2014) Using visual aids to show concepts,
which are more difficult to grasps just by explanation alone, are a good way to help patients to
grasp the educational materials. The way that graphics and text are combined maximizes the
effectiveness of patient education. (Pusic et al., 2014) This means patients will get the best
available instruction. These are extremely effective ways to improve patient education. They also
reach patients who are below the recommended reading level. At the end of the day, the main
objective of patient education material is to ensure that a patient will be able to care for
themselves, and not have to return to the ED for further treatment due to lack of proper aftercare
or discharge instructions.
Ache & Wallace (2009) began evaluating the readability of end-of-life materials. This is
a very serious time in a person’s life. The last thing a patient wants to have to stress about is the
ability to read the material that determines their final moments. Ache & Wallace (2009) found
that every end-of-life patient education material was above recommended 6th grade reading level.
Furthermore, Ache & Wallace (2009) found that approximately one-third were written at a
college level. The majority of people facing an end-of-life situation at this point in time do not
have college degrees. The people facing this situation are children of depression-era parents and
most have been hard working blue-collar people that have no further education than high school,
if they even completed that. End-of-life patient education materials can potentially offer a wealth
of knowledge to assist patients and their loved ones in making these decisions. (Ache & Wallace,
2009) However, if the patients and loved ones are unable to understand the materials presented,
they often make decisions without full knowledge of the ramifications. This often leads to fear
and misunderstanding when a person is facing an actual end-of-life situation.
PATIENT EDUCATION MATERIALS AND LITERACY 10
End-of-life situations are one of the most difficult situations a person will face. Preparing
an advance directive (AD) makes a person face that fear way before the end of their life. An
advance directive instructs what is to be done when a patient is no longer able to make decisions,
due to medical or mental ailments that render them unable to make the decisions. Waite et al.
(2013) examined the effect of literacy and race to the amount of advance directive. It was found
that participants with low literacy were less likely to have an AD. (Waite et al., 2013) Often
times, it is found that people with less education will not have an AD. They don’t have the funds
to hire an attorney to draft one, they aren’t able to understand how to make one, and they don’t
have the knowledge to understand that one is needed. People with low literacy levels lack the
necessary education to grasp the necessity of an AD. This leads to confusion when families are
forced to make end-of-life decisions. Families do not want to make that decision, but are forced
into it due to the lack of an AD. As Americans face increasingly complex advance care planning
decisions, educating people about their options and documenting their preferences has become
an important way to protect their wishes and rights. (Waite et al., 2013) The study points out that
patient regularly discuss end-of-life wishes, however, they don’t document their wishes. When a
person doesn’t have documentation of their end-of-life wishes, every possible medical
intervention is attempted to save that persons life. Healthcare providers are there to save lives,
not let them die. However, in the event that a person wishes to be allowed to die when the time
has arrived to die, they must put that wish into documentation. That documentation can be filled
out with a physician, but patients tend to procrastinate this process because of fear or the thought
that that won’t happen for many years.
Patient education materials are extremely important to the furthering of patient health.
Literacy of those materials is extremely important. Lack of understanding of patient education
PATIENT EDUCATION MATERIALS AND LITERACY 11
materials often causes return visits to healthcare providers, further injury, and a decrease in
patient health. Patient education material is improving; however, it still has a long way to go.
These revisions of patient education material include: adjusting reading level to national
standards, using visuals, and connecting written words with verbal explanations. A person gets a
multitude of information at a physician’s office, and by the time they arrive home, they have
forgotten a lot of it. Placing written, understandable instructions in their hand, that they can read
when they get home, will help them to recall the information. This understanding is extremely
important when a patient is discussing and determining their end-of-life wishes. At some point in
life, patients should create an advance directive that explains what to do if they are unable to
make decisions for themselves. This type of decision should be made with the help of extremely
understandable patient education materials. This allows a patient to make an informed and safe
decision that best fits their wishes. Patient education materials still have a long way to go, but the
materials are on the right path to help and increase the overall health of patients.
PATIENT EDUCATION MATERIALS AND LITERACY 12
References
Ache, K. A., & Wallace, L. S. (2009). Are end-of-life patient education materials readable?
Palliative Medicine, 23(6), 545-548.
Agarwal, N., Sarris, C., Hansberry, D. R., Lin, M. J., Barrese, J. C., & Prestigiacomo, C. J.
(2013). Quality of patient education materials for rehabilitation after neurological
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