Limited Literacy and Chronic Disease Management

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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
• jking_at_uotttawa.ca
• Canadian Respiratory Conference
• April 29, 2011

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(No Transcript)
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Learning Objectives

• Following the presentation participants will be
  able to
• 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

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My Grandfather- WWI
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Chronic Disease Management

• Diagnosis
• Self-Assessment
• Self-Treatment
• Learning to interpret changes in disease over a
  life time
• Goal to Improve Quality of Life

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Chronic Disease Managment

• Knowledge- know the triggers for your asthma
• Skills- learn how to use a bronchodilator
• Behaviours- stop smoking, increase exercising

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Living with a Chronic Disease

• We expect patients to
• 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)

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Living with a Chronic Disease

• Affects learning due to
• 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)

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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 self-management.

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Literacy in Health Care Practice

• 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
  day-to-day living by modifying their behaviour.
• (Terry Davis et al. June,1996 Arch Int Med)

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Literacy in Health Care Practice

• 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

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Living with Limited Literacy

• Reduced use of preventive health services (Scott
  et al. 2002)
• Not seeking medical attention (Baker et al. 1993)
• Increased hospitalizations (Baker et al. 2002)
• Misinterpret medication instructions (Williams et
  al. 1995)

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Common Themes from Canadian Literacy and Health
Research Projects

• Powerlessness- shame, stigma
• Different Roles and Relationships-family/children
• Mixed expectations-between HCP and Patients
• Living Between Worlds- Isolation
• Language and Health Care Interactions- blame the
  victim hard to reach
• (Brez, 1997,Shohet, 2001,2002,2004 Gillis, 2004,
  King, 2007,2010)

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Living with Limited Literacy and Lung
Health Problems

• Misinterpret asthma medication instructions
  (Williams et al. 1995)
• Worse quality of life, physical function and more
  emergency room visits for asthma (Mancuso, 2006)
• Reduced knowledge about asthma and
  self-management (Mancuso et al 2006)
• Experiences of being powerless in dealing with
  health care providers and not being believed
  (King, 2007)

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Barriers to Prevention and Self-Care for People
with Limited Literacy and Chronic Diseases
(Chiarelli, CPHA, 2006)

• 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
  self-care are present

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Barriers in Chronic Disease Management

• 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)
• 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)

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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.

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Having a Test- but what kind?
Module 1

• What kind of test are you having?
• A colonoscopy
• What do you have to do the night before the test?
• Drink a special liquid
• AMA Foundation www.ama-assn.org

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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
• 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

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Is this safe for someone on a salt-free diet?

• We rarely say
• Pass the Sodium
• From Dr. Rima Rudd
• Harvard University

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Barriers in Verbal Interactions -Power and
Control

• Medical authority- God-like
• Power of information
• Information experts (Bakker et al, 2001)
• Power to heal
• Imbalance of power
• 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)

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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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Information Gathering by Health Care Providers

• 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).
• Remember that patients may be silenced by the
  disease, muted by treatment and stunned by shock
  and pain during an interview (Morse, 2002)
• Researchers have found that patients talk for
  only 22 seconds before being interrupted
  (Langewitz et al, 2002).
• We will often interrupt patients to get them
  back on track

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Kevin Pope- Artist Marcel Schurman Collection
Cards www.schurman.com
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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

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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

• Its 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, everybodys 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 cant read and write you
  are treated differently, how do I put it, youre
  a subclass, you are inferior Mekal
• Fear of Exposure
• Obligation to Follow Advice
• Establishing Trust

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Sources of Patient Education
Participation in Community of Practice of the
Literacy Classroom
Language and health care Interactions
Family Doctor Pharmacist Family
and Friends Individual Participant
Individual Shift in Perspective Transformation
Mismatched Expectations
Different Roles and Relationships
Powerlessness
Living Between Worlds
Learning Context
Individual Learner
System
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Strategies Patient - Provider interactions

• Take your time, you will save time in the long
  run
• Use common words not jargon (Clear Verbal
  Communication)
• Ask the patient what they already know about
  their condition
• Give people enough details in chronic illness
  self management patient education so that they
  can integrate the information into their lives

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Strategies Patient - Provider interactions

• 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)

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Teach Back or Show Me(Schillinger, 2003)

• Ask patient to demonstrate understanding by
  saying
• What will you tell your spouse/friend about your
  condition ?
• 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 dont ask if someone understands or has
  any questions. Most people will say they
  understand even if they dont understand.

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Strategies Community of Practice

• Clinic or Program
• 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

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Strategies Community of Practice

• Clinic or Program
• 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

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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)

• 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 dont 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

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Merci/ Thank You jking_at_uottawa.ca