Transcript Literacy and Lung Health

Limited Literacy and
Chronic Disease Management
Judy King PhD, Physiotherapist
Assistant Professor
Physiotherapy Program
School of Rehabilitation Sciences
Faculty of Health Sciences
University of Ottawa
[email protected]
Canadian Respiratory Conference
April 29, 2011
Learning Objectives
Following the presentation participants
will be able to
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Describe how limited literacy impacts on chronic
disease management
Identify the barriers faced by patients living with
limited literacy and chronic illnesses in receiving
chronic disease management interventions
Identify specific strategies to reduce some of these
barriers in their own practice
My Grandfather- WWI
Chronic Disease Management
Diagnosis
Self-Assessment
Self-Treatment
Learning
to interpret changes in
disease over a life time
Goal to Improve Quality of Life
Chronic Disease Managment
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Knowledge- know the triggers for your asthma
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Skills- learn how to use a bronchodilator
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Behaviours- stop smoking, increase exercising
Living with a Chronic Disease
We expect patients to
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Interact with multiple health care providers and health care facilities
Coordinate appointment schedules
Finding their way in health care facilities (signage)
Understand and assess information from a variety of different
sources
Follow complex chronic disease management program
Plan and make changes to their lifestyle
Make informed choices and decisions
Being aware of and understanding how to access care when they
need it.
(Institute of Health Improvement, 2008)
Living with a Chronic Disease
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Affects learning due to
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Pain
Medications
Fatigue
Decreased oxygen levels, increased CO2
Age
Stress
Disabilities as a result of the chronic condition
Previous health care experiences
Changes from family caregiver to being taken care of
( Osborne, 2006)
Health Literacy
Health literacy is the degree to which people are able
to access, understand, appraise and communicate
information to engage with the demands of different
health contexts in order to promote and maintain good
health across the life-course.
(Kwan, Frankish and Rootman, 2006)
These are the same skills needed for chronic disease selfmanagement.
Literacy in Health Care Practice
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“In health care, the problem is not just that
people are expected to read materials. They are
also expected to comprehend and absorb the
message and apply that comprehension in dayto-day living by modifying their behaviour.”
(Terry Davis et al. June,1996 Arch Int Med)
Literacy in Health Care Practice
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Health Promotion and Prevention material
Appointment schedules
Navigating the hospital/clinic/community agency
Pre-assessment forms
Consent forms
Medication instructions
Patient education materials
Equipment instructions
Dietary plans
Insurance forms
Living with Limited Literacy
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Reduced use of preventive health services
(Scott et al. 2002)
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Not seeking medical attention (Baker et al.
1993)
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Increased hospitalizations (Baker et al. 2002)
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Misinterpret medication instructions (Williams
et al. 1995)
Common Themes from Canadian Literacy
and Health Research Projects
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Powerlessness- shame, stigma
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Different Roles and Relationships-family/children
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Mixed expectations-between HCP and Patients
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Living Between Worlds- Isolation
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Language and Health Care Interactions- “blame the
victim” “ hard to reach”
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(Brez, 1997,Shohet, 2001,2002,2004 Gillis, 2004, King, 2007,2010)
Living with Limited Literacy and Lung
Health Problems
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Misinterpret asthma medication instructions (Williams et al.
1995)
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Worse quality of life, physical function and more
emergency room visits for asthma (Mancuso, 2006)
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Reduced knowledge about asthma and self-management
(Mancuso et al 2006)
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Experiences of being powerless in dealing with health care
providers and not being believed (King, 2007)
Barriers to Prevention and Self-Care for People
with Limited Literacy and Chronic Diseases
(Chiarelli, CPHA, 2006)
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Health information is not presented in a way they can
understand
Difficulty navigating the system and knowing what
options are available
Limited basic knowledge and skills for prevention and
self-care
Understanding how the body works, the condition and
the treatment
Difficulty advocating for themselves in the health system
Practical supports for healthy lifestyle or self-care may
be unavailable or inaccessible
Language and cultural barriers to prevention and selfcare are present
Barriers in Chronic Disease
Management
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In matters of print: Researchers have found
significant gaps between the readability of
patient education material and the literacy levels
of patients (Merriam et al. 2002)
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In matters of speech: People with low literacy
skills have problems with verbal explanations.
Often, they will not ask questions to hide their
lack of understanding. (Parikh,1996)
What is it like to have limited literacy?
 Your
naicisyhp has dednemmocer
that you have a ypocsonoloc. A
ypocsonoloc is a test for noloc
recnac. You must drink a laiceps
diuqil the thgin erofeb the
noitanimaxe to naelc out your noloc.
Module 1
Having a Test- but what kind?
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What kind of test are you having?
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A colonoscopy
What do you have to do the night before the
test?
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Drink a special liquid
AMA Foundation www.ama-assn.org
Living with Limited Literacy
Limited literacy does not mean limited
intelligence or motivation.
 People often do not receive information in a way
that is easily understood.
 Patients may be too embarrassed, stressed or
overwhelmed to ask health care providers for
further explanations
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Taking Medications
Rx Dr. Smith
Med Name
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Take one teaspoon
4 times daily by mouth
-------------------------------- Does everyone know what a
teaspoon is?
 Do people use different
spoons with different volume
amounts each time?
 What does 4 times a day
mean, every 6 hours?
From Dr. Rima Rudd, Harvard University
Is this safe for someone on a salt-free diet?
We rarely say
“ Pass the Sodium”
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From Dr. Rima Rudd
 Harvard University
Barriers in Verbal Interactions
-Power and Control
Medical authority- “God-like”
 Power of information
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Information experts (Bakker et al, 2001)
Power to heal
 Imbalance of power
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Physical
Emotional
The Locus of Control is with the health care
professional who usually controls all the
components of the health care interaction (time,
place, content)
Barriers in Verbal Interactions
-Vocabulary
 Specialized
language used in health care,
often times excludes people
 Medical
Terms
 Abbreviations
 Jargon
If a test result is positive is that good or bad??
 “the patient will be transferred to the floor”
 The asthmatic, versus the person living with asthma
(Client-Centred)
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23
Information Gathering by
Health Care Providers
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Health care providers need to “encourage patients to tell
their stories instead of imposing the medical plot of illness”
to get a true sense of the patients condition and concerns
(Clark and Mishler, 1992).
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Remember that patients may be “silenced by the disease,
muted by treatment and stunned by shock and pain” during
an interview (Morse, 2002)
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Researchers have found that patients talk for only 22
seconds before being interrupted (Langewitz et al, 2002).
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We will often interrupt patients to “get them back on track”
Kevin Pope- Artist
Marcel Schurman
Collection Cards
www.schurman.com
The meaning of patient education experiences for adults
with limited literacy and chronic illnesses (King, 2010)
Themes
 Different roles and relationships
 Language and health care interactions
 Living Between Worlds
 Mismatched expectations
 Feelings of Powerlessness
Different Roles and Relationships
“The role or job of the health care professionals
is to teach and explain your disease and give
you advice on how to change your life”- Nyela
 Role of the Health Care Professionals
 Roles and Relationships of Family
 Self Responsibility for Health
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Language and Health Care
Interactions
“It’s health so the person has to know what she
and he is signing or listening to, so I think it is
very important”. Lynn
 Verbal and Written Information
 Vocabulary
 English as a Second Language
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Living Between Worlds
“everyone is different, everybody’s condition is
different, so you can only tell your own story” –
Ramon
 Engagement in Society
 Overcoming Adversity
 Living in Isolation
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Mismatched Expectations
“Sometimes just they don't treat you until they
decide they are going to treat you, they are
putting you to a lesson, they sit you there and
wait, you wait, wait, wait and they say, “Are you
feeling better now?’ - Sonia
 Respect
 Patient Education
 Time
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Feelings of Powerlessness
“In my opinion, if you can’t read and write you
are treated differently, how do I put it, you’re a
subclass, you are inferior” – Mekal
 Fear of Exposure
 Obligation to Follow Advice
 Establishing Trust
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Language and health care
Interactions
Different
Roles and
Relationships
Individual
Shift in
Perspective
Transformation
Mismatched
Expectations
Participation
in
Community
of Practice of
the
Literacy
Classroom
Living Between
Worlds
Learner
Family
Doctor
Pharmacist
Family and
Friends
Individual
Participant
Powerlessness
Individual
Sources of
Patient Education
Learning
Context
System
Strategies
Patient - Provider interactions
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Take your time, you will save time in the long run
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Use common words not jargon (Clear Verbal
Communication)
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Ask the patient what they already know about
their condition
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Give people enough details in chronic illness self
management patient education so that they can
integrate the information into their lives
Strategies
Patient - Provider interactions
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Make sure that information is provided in a number of
formats and
Make sure that the patient education you are providing is
evidenced based
Review the information with the patients, make
collaborative goals ( Schillinger, AMA, 2005)
Patients depend on health care providers to help them
sort out relevant information and confirm information that
they acquire from outside sources (Bakker et al, 2001)
Health care providers may make assumptions that the
patient already understands the nature of his or her
disease and not provide any information (London,1997)
“Teach Back” or “Show Me”(Schillinger,
2003)
Ask patient to demonstrate understanding by saying
“What will you tell your spouse/friend about your condition
?”
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“ I want to be sure I explained everything clearly, so can
you please explain it back to me so I can be sure I did”
Please don’t ask if someone understands or has any
questions. Most people will say they understand even if
they don’t understand.
Strategies
Community of Practice
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Clinic or Program
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Review all of the information that a patient
receives from the different members of the
team
Are there some pamphlets with out of date or
even wrong information?
Do a needs assessment of the patients of what
information is helpful to them
Do you need to redesign material, make sure
to use a clear design approach
Strategies
Community of Practice
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Clinic or Program
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Walk through the clinic process as a patient,
collect all of the information that a patient
would be given
Do team members provide conflicting
information that the patient has to figure out?
Is information repeated at different
appointments, we need to remember that
people living with chronic diseases use information
when they need it, not when we give it to them
Strategies
System Changes
Change signage in the hospital
 Have a shame-free patient centred environment
by building respect relationship on trust
 Simplify administrative procedures which oblige
people to fill out complicated forms.
 Develop easy-to-read information, consent
forms, treatment plans
 Coordinate care programs across sites, regions
 Partner with literacy organisations
 Lobby for increase adult literacy funding
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From People living with limited Literacy and Chronic
Diseases (Chiarelli et al., CPHA 2006)
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Dealing with our health is just one part of our day-to-day
concerns, including having a safe place to live, a decent job
and taking care of our families
We may understand what to do, but don’t have the resources
Involve us in studies, planning and activities about prevention
Reach us through trusted contacts (e.g. literacy programs)
and familiar places (malls, work, schools, community health
centres)
Schools are a great place to talk about prevention because
the whole family can be involved (we learn from our kids)
Use many ways to get messages out to us, and repeat again
and again
Give us practical information about what to do using everyday
words
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“everyone of us is going to get sick one
day. That's one thing that we can't hide
ourselves from but they should give more
effort and clear attention to the patient
because that is when a person is sick you
know they always have hope the doctor,
the nurse you know somebody can help to
do something for them.” Warda
Merci/ Thank You
[email protected]