Transcript TSID Deaf People`s Health Literacy

Health Literacy and Deafness
By Teri Hedding MA, CDI
Mount Sinai Health System
Chicago, IL.
Definitions:
Literacy
• Collins English
Dictionary (2010):
– The ability to read
and write.
Functional Literacy
• A person must have
basic literacy to
function in everyday
situations:
– Paying bills
– Shopping
– Reading street
signs/maps
Health Literacy
• More than just the
ability to read and
write.
• Requires a complex
group of reading,
listening, analytical,
decision-making skills
to be able to take care
of healthcare needs.*
* National Network of Library (2010)
Health Literacy
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Fill out complex forms
Locate providers & services
Understand consent forms
Share health history with
doctor
Follow doctor’s instructions
Read the prescription
instructions
Maintain a healthy lifestyle
Manage chronic diseases*
* Medline Plus (2010)
Statistics
• 90 million people in U.S (nearly ½ of population)
have trouble understanding and using health
information*
• Deaf adults were found to have lower health
literacy compared to their hearing
counterparts**
*Health Literacy: A Prescription to End Confusion by L. Nielsen-Bohlman, A.M. Panzer, & D.A. Kindig; Washington
DC; National Academics.
** The Current State of Health Care for People with Disabilities by National Council on Disability, Washington, DC
Health Disparities
• Social epidemiologist, Paula Braveman (2006)
defined “health disparities” as:
“Group differences in health that are
unnecessary, preventable, and unjust”
Health Disparities
• Elderly persons, immigrants, and low-income
groups receive poor quality services or
treatments *
• Recent study in Chicago demonstrated that
disparities in health status indicators between
Black and Whites have widened significantly
over time**
*Braveman, P. (2006). Health Disparities and Health Equity: Concepts and Measurement. Annual Review of Public Health 17:,167-194
**Orsi, J., Margellos-Anast, H.,& Whitman, S. (2010) Black-White Health Disparities in the United States and Chicago: A 15 –Year Progress Analysis
American Journal of Public Health, Volume 100 (2), 349-356
Deaf Adults
• 3x more likely to report fair to poor health*
• High blood pressure & diabetes were more
prevalent**
• Poor reading skills linked to low health literacy
and high risk for health disparities***
• Poor health knowledge
* 2008 National Center for Health Statistics
** 2009 National Council on Disabilities
***Pollard, R.Q, JR, & Barnett, S. (2009) Health-Related Vocabulary Knowledge Among Deaf Adults. Rehabilitation Psychology, 54
(2) 182-185
Low Health Knowledge
• A Survey with 203
Deaf people in
Chicago in 2004
* Partnership between Sinai Health
System & Advocate Illinois Masonic
Medical Center
** Funding made possible by Michael
Reese Health Trust
Low Health Knowledge
• 40% of respondents
could not identify a
single warning sign of
heart attack
• 62% of respondents
could not identify any
warning sign of stroke
Low Health Knowledge
• 38% of our
participants knew
what cholesterol
was.
Low Health Knowledge
• 18% of our women
subjects knew what
a pap smear was.
Low Health Knowledge
• 56% did not
identify having anal
sex without a
condom increases
the risk of
contracting the HIV
virus.
A Glimpse of Deaf People’s
Health Experiences
Real Life Experiences
• A patient was so
happy when the
doctor told him that
the testing results
showed that he was
HIV positive.
Real Life Experiences
• A diabetic patient
received the package
of insulin; however
she put it away in her
closet without any
understanding why
the medicine was
needed.
Real Life Experiences
• A female patient thought
she was pregnant when
she was actually going
through menopause.
• Another female going
through menopause
blamed the doctor for
“locking in” during pap
smear.
Real Life Experiences
• Doctor asked a deaf
patient to sign the
consent forms for
an amputation
without an
interpreter.
Disclaimer
There are many Deaf individuals who
demonstrate health knowledge similar to
hearing persons. Typically, these patients are
well educated and had effective
communication with their families while
growing up.
Why ?
Actual Patient
Different Factors
• Environmental
factors
• Professional factors
• Patient factors
• Interpreter factors
Environmental factors
Environmental Factors
• Incidental learning
– 90% of Deaf
children are born
into hearing
families.
– Many parents
typically don’t
become fluent in
ASL.
Environmental Factors
• “Dinner table
syndrome”
– A deaf child is
unable to hear
about his
grandmother’s
surgery during
surgery.
Environmental Factors
• Mom telling Dad
about Aunt Pam
suffering a stroke.
– Hearing child
– Deaf child
Incidental Learning
• A hearing child
overhears a TV
program his parents
were listening and
learns the warning
signs of a heart attack.
• He then would probe
his parents about
what he heard and ask
further questions.
Environmental Factors
• A deaf child is unable
to hear about the
health information on
television or radio.
Environmental Factors
• A deaf child is often
left out in the
conversations
between his parents
and the doctor.
• Parents are the
“gatekeepers” of the
information.
Environmental Factors
• Dr Robert Pollard (1993)
Global Fund of
Information Deficit
Environmental Factors
• A deaf child may not
have the basis to even
ask the right
questions—and
thereby LEARN
Environmental Factors
• Deaf people from other
countries:
– May or may not have
established language
– May or may not have
fund of information;
depending on what’s
available in that
country
Brother & Sister from Iraq
Professional factors
Professional Factors
• Lack of deafness
training
• Pathology of hearing
loss
• Focus on “curing” or
restoring function
Professional Factors
• Assumptions:
– Deaf people can read lips
effectively
– Deaf people can read &
write English
– “broken English” indicates
that a Deaf patient is not
intelligent or has a
cognitive disorder.
Professional Factors
• Time pressures:
– Doctors irritated or
impatient with writing
notes
– Doctors sometimes use
abbreviations:
i.e. 4x a day w/meals
– Terrible handwriting!
Professional Factors
• “Deaf-friendly”
handout sources
nonexistent
Professional Factors
• Refuse to provide
interpreters
• Overestimate
family member’s
sign language skills.
Patient Factors
Patient Factors
• Lack of “patient
model”
– Appointments
– Waiting rooms
– Repeated questions
Patient Factors
• Personal medical
history unknown
• Family medical
history also
unknown.
Patient Factors
• Unaware of the names
of medication
• Visual identify of
medication
• Expectation of a pill
cure for all medical
problems.
Patient Factors
• Little emphasis on
preventative medicine
– “I don’t hurt”
– “I don’t see anything
abnormal”
– ”I’m not sick”
Patient Factors
• Unrealistic
expectation of
physician’s time
“ I had a rash on my legs and tried the doctor’s
medication but it didn’t go away. So I was
reading in a magazine and it said to use lip
balm which I did. It went away. That was five
years ago. My cousin also had a rash on her
arm but she is allergic to strawberries. I told
her not to eat them but she is stubborn….”
Patient Factors
• No time to
appropriately
explain:
– Diagnosis
– Disease process
– Medications
– Side effects
Patient Factors
• ‘You are a doctor.
Why are you
sending me to
another doctor
?!?!”
Patient Factors
• Afraid of appearing
unintelligent
• “Deaf Nod”
Interpreter Factors
Interpreter Factors
• Short supply of
certified
interpreters
nationwide
qualified to do
medical
interpreting
Interpreter Factors
• Lack/limited medical
component in interpreter
training programs.
• Lack of standards in
medical interpreting
• Limited opportunities in
continuing education
focusing on medical
interpreting.
Interpreter Factors
• Lack of medical
signs
• English versus ASL
• Classifiers
• Fingerspelling or
“make-up” signs
Positive!
• “ Lab results show
that you are HIV
positive”
Interpreter Factors
• “White coat
syndrome”
Interpreter Factors
• Deaf patients with
minimal language
skills
• Lack of experiences
with cultural diversity
• Patients from other
countries
Interpreter Factors
• Considered a sign of
weakness to ask a
colleague for help.
Tips/Tools
Tips/Tools
• Strong background
in medical
terminology
• Knowledge and
understanding of
medical procedures
and treatments.
Tips/Tools
• Be honest in your
self assessment
• Recognize your
limitations.
Tips/Tools
• Utilize existing
resources
– Mentoring
– Local deaf events
– Medical/Anatomy
courses
– Use a CDI
Tips/Tools
• Shift from
“invisible”
interpreter to an
active participant in
communication
process.
Tips/Tools
• Meet Deaf patients
prior to their
appointments
Tips/Tools
• Interpret the entire
visit:
– Registration
process
– Environmental cues
in waiting room
– Triage
– Doctor’s
dialogue/exam
Deaf Children
• Interpreter ALL
conversations between
the parents and staff.
• Continue to interpret
even if a child is not
paying attention.
• Do not engage in
conversations with
children.
Tips/Tools
• Access to Wi-Fi
• Visual aids
Recommendations for Interpreter
Educators/Training Programs
Recommendations
• Collaboration with
medical
schools/programs.
• Add medical language
competency to
traditional
interpreting education
programs.
Recommendations
• Require students to
translate the
everyday medical
questions.
Everyday Medical Questions
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What brings you here today?
When did it start?
Do you have any medical problems?
On scale of 1 to 10, what is your pain level?
Do you have any medical allergies
When was your last menstrual period
Recommendations
• Arrange hospital
tours
• Observations
– Hearing patients
– Deaf patients
Recommendations
• Develop guides for
mentors
• Provide hand-on
interpreting
opportunities
under supervision.
Recommendations
• Encourage students’
confidence
• Encourage students to
create a “tool kit”
• Evaluate and provide
guidance as which
medical settings the
student is qualified to
interpret.
Recommendations
• Work with the local
Deaf community to
standardize ways of
signing medical
terminology in ASL.
Questions