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It's hard for me to get eye contact. But I'm the patient. I don't want them speaking to me in the third person. I want them to speak directly to me. ... – PowerPoint PPT presentation

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Title: Communication

(No Transcript)
  • an introduction to barriers and solutions

What Is Communication?
  • "the transmission of information, thoughts, and
    feelings so that they are satisfactorily received
    or understood

Gerteis M, Edgman-Levitan S, Daley J, et al.
(eds). Through the Patients Eyes Understanding
and Promoting Patient Centered Care. 1993 San
Francisco Jossey-Bass. Available
online http//
Communication and Quality Care
  • For me, quality care is knowing that the
    provider is really good technically and also
    willing to take the time to communicate with me
    and explain what's happening every step of the
    way. Sometimes you get one and not the other.
    If you get both together, that's perfect!
  • Marta Redding

Goals of Communication in the Health Care Setting
  • Identify and respect preferences, needs, and
  • Elicit complete information
  • Demonstrate compassion and understanding
  • Ensure therapeutic goals correspond with desires
  • Transmit technical information in lay terminology
  • Enhance overall comfort with health care

Communication with Women with Disabilities Often
Falls Short
  • Indicate higher rates of dissatisfaction with
    health care
  • More than 13 do not discuss concerns

Iezzoni LI, Davis RB, Soukup, O'Day B. (2003).
Quality dimensions that most concern people with
physical and sensory disabilities. Archives of
Internal Medicine, 1632085-2092.
How Can We Do Better?
  • Identify and examine roadblocks
  • Provider barriers
  • Patient barriers
  • Structural barriers
  • Develop and implement solutions
  • Attitude, knowledge, skills
  • Systems improvement

Communication Roadblocks
  • Provider barriers
  • Patient barriers
  • Structural barriers

Provider Barriers
Attitude A providers attitudes about disability
can negatively impact the womans health care
Veltman A, Stewart D, Tardif G, Branifan, M.
Perceptions of Primary Healthcare Services Among
People with Physical Disabilities. Part 1 Access
Issues. Medscape General Medicine 2001 Volume 3,
Number 2.
Attitude Quality of Life
  • The neurosurgeon told me that he was only
    interested in quality of life and that in no way
    would he be looking to prolong my life if he
    didn't feel the quality would be acceptable.
    However, neither he nor anyone else has asked me
    what criteria I would use in judging what was an
    acceptable quality of life. I am very worried
    that if I get admitted unconscious or without the
    power of speech, he will make a decision based on
    his judgment and his criteria about what is an
    acceptable quality of life.

Iezzoni L, ODay, B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Chapter 6, page 99.
Attitude Autonomy
  • One of my clinicians wouldnt explain anything
    to me. To him everything's so visual and Im
    blind. He couldn't understand how I could
    conceive of what he was trying to tell me. When
    I talked to him, he'd say, Well, that's
    complicated. And I'd say, You know, I'm pretty
    smart. You could try to explain it to me. After
    I convince him, he finally explains things to me,
    and it's fine.

Iezzoni L, ODay, B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Chapter 8, page
Attitude Pain
I had a horrible experience when I needed to
have a mole removed from my leg. The provider
just went ahead and started the procedure without
giving me any anesthetic. When I complained that
it hurt, he said It cant hurt youre
paraplegic, you cant feel anything below your
waist. Health professionals are often ignorant
about this and treat me as though my pain isnt
Miaskowski C. The Role of Sex and Gender in Pain
Perception and Responses to Treatment, in R.J.
Gatchel and D.C. Turk, eds. Psychosocial Factors
in Pain Critical Perspectives (New York The
Guildford Press, 1999) 401411, at 406.
Attitude Pain
  • If there is a single experience shared by
    virtually all chronic pain patients it is that at
    some point those around them chiefly
    practitioners, but also at times family members
    come to question the authenticity of the
    patient's experiences of pain. This response
    contributes powerfully to patients'
    dissatisfaction with the professional treatment
    system and to their search for alternatives. ...
    Reciprocally, chronic pain patients are the bête
    noire of many health professionals, who come to
    find them excessively demanding, hostile, and
    undermining of care. A duet of escalating
    antagonism ensues, much to the detriment of the

Kleinman A. The Illness Narratives. New York
Basic Books, 1988, page 57.
Attitude Psychiatric Disability
  • Telling a clinician about my psychiatric
    disability is really importantfor good
    communication, to guard against interactions
    between psychotropic and other medications, and
    other treatment. You need to be honest and not
    hide a fact because youre embarrassed or too
    anxious. But once a provider finds out I have a
    psychiatric disability, he questions my judgment
    on all kinds of things and wonders whether Im
    reporting things accurately. Its not a
    relationship of trust, and thats the thing
    thats so frustrating is that you just have to go
    through people. Its traumatic. It means having
    to shop again and having to shop again, and
    having to confront the clinician and say, Youre
    not really listening.

Privileges to Rights People Labeled with
Psychiatric Disabilities Speak for Themselves.
National Council on Disability January 20, 2000.
Provider Barriers
  • Knowledge
  • Women with disabilities want providers with
    basic knowledgeand who are willing to admit
    when they dont know
  • Medical schools offer little training

Breaking Down Barriers to Health Care for Women
with Disabilities a White Paper from a National
Summit, December 2004. U.S. Department of Health
and Human Services, Office on Disability, Office
on Womens Health. Available online http//www.hh
Knowledge The Disability Experience
  • I love my provider dearly, but she doesn't know
    a lot about spinal cord injury. One time my
    shoulders were really hurting. So she told me,
    Don't use your arms so much. I'm a paraplegic,
    and all I have is my arms! I do everything with
    them. I told her she was absurd to say something
    like that to me.

Iezzoni L, ODay B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Chapter 6 page
Knowledge Specific Health Care Needs
  • I always have to keep reminding my provider
    about certain things that need to be checked
    because of my MS, like my thyroid. When I first
    went to my new primary care provider, I asked
    what he knew about MS and he said, Well, not
    much, but I'll find out. I don't think he knows
    very much.

Knowledge Specific Health Care Needs
  • I was born with my disabilities. I'm 25 years
    old. I've been going to the hospital for
    children my whole life, and I was nervous to
    switch over. A couple of appointments with adult
    providers didn't go so well, so I'm thinking, Why
    did I do this?...I felt the clinicians had very
    little knowledge. A couple of my concerns had to
    do with urological issues and catheterization. I
    needed to do a lot of explaining, but I didn't
    think it was necessary to explain things to the
    provider! That in itself made me uneasy. I've
    had excellent care my whole life. Now I'm
    throwing all my trust into people whom I don't
    know that I do trust. Now I go to each provider
    thinking, Do I have to educate them from day one
    about everything?"

Iezzoni L, ODay B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Chapter 8, page
Knowledge Specific Communication Needs
  • In my work as an ASL interpreter in a health
    care setting, I often encounter health
    professionals who are unfamiliar with sign
    language interpreting. Some of them take the time
    to orient themselves and end up communicating
    well with the patient. Others barrel on ahead and
    make all kinds of mistakes that lead to
    misunderstandings, lack of completeness, and
    patient dissatisfaction.

Provider Barriers
  • Skill
  • Issues specific to women with disabilities can
    get lost in the larger picture

  • Listening
  • Asking questions
  • Developing co-expert model of care
  • Use of proper etiquette
  • Incorporating communication aids
  • Handling frustration

Patient Barriers
Patient Barriers
Negative Prior Experiences
Impact of Negative Experiences Internalized
  • Negative societal attitudes about disability

Padilla M. But Youre Not a Dirty Mexican"
Internalized Oppression, Latinos Law , 7 Texas
Hispanic Journal of Law and Policy 61-113, 65-73
(Fall 2001) http//
Flight Response
Distrust and disappointment
Failure to disclose key information Poor
adherence to treatment recommendations Avoidance
of care altogether
Incomplete or inappropriate care Poor health
Steinberg AG, Wiggins EA, Barmada CH, Sullivan
VJ. Deaf women experiences and perceptions of
healthcare system access. J Women's Health
(Larchmt). 2002 Oct11(8)729-741.
Fight Response
Distrust and disappointment
Demanding or angry manner Alienation of health
care personnel
Incomplete or inappropriate care Poor health
Ideal Model of Care
  • Provider and woman become co-experts
  • Provider offers medical / technical expertise
  • Woman brings intimate knowledge about her body
    and its needs
  • Negotiate a shared agenda together
  • Short-term goals (each visit)
  • Longer-term goals (future visits, roadmap for
  • Anticipate frustrations and lay a groundwork for
    working them out

Structural Barriers
  • Time
  • Cost
  • Provider gatekeeper role

Increased Time Is Needed…
  • …To provide assistance
  • …To communicate
  • …To complete forms
  • …To coordinate care
  • …To research

  • More costly to care for women with disabilities,
    due to…
  • Interpreter fees
  • Equipment purchases
  • Additional staff costs
  • Decreased productivity

Gatekeeper Role Providers Control Access to…
  • Medical services
  • Independent living and community services

Gatekeeper Role Impact
  • Access to services affects ability to live
  • Restricted access results in lower level of
    functioning and lower quality of life
  • Women may feel angry and resentful when provider
    refuses requests
  • Women appreciate advocacy efforts on their behalf

Finding Solutions
Strategies to Enhance Communication
Identify Personal Biases
  • Its important to identify and address our
    beliefs so they dont interfere with care. When I
    first started working with women with
    disabilities, I got called on use of language
    like wheelchair-bound, instead of using a
    wheelchair. This choice of language reflected an
    unconscious bias that people with disabilities
    lead lives that are limited and trapped. I also
    noticed that I dumbed down my language when
    talking with people who were blind or deaf, as
    though having a disability automatically meant
    they werent smart enough to understand normal

Examine and Debunk Common Myths
  • Do not have non-disability-related health
  • Have no sexual feelings/arousal and are not
    sexually active
  • Are promiscuous if their disability is
  • Are trouble makers if they speak out or complain
  • Dont know their own health needs if their
    disability is psychiatric
  • Are dangerous if their disability is psychiatric
  • Women with disabilities…
  • Are angry and bitter
  • Are unable to live independently
  • Are passive and in need of care
  • Are unable to speak on their own behalf or
    understand what is said
  • Are unable to get exercise or eat properly
  • Are not victims of domestic violence or rape
  • Are disinterested in or unable to parent

Learn About the Disability Experience
  • National Disability Council
  • http//
  • Social Security Disability
  • http//
  • Federal Disability Web Portal
  • http//
  • Disability Resources
  • http//
  • Memoirs of the Disability Experience
  • http//
  • Academic journals and other media
  • http//

Learn About Disability-Specific Health Needs
  • Ask!
  • Women with disabilities often know their bodies
    and are experts about their own needs
  • Research disease-specific needs
  • Read, consult, etc.

Learn About Disability-Specific Communication
Needs and Methods
  • See module Communicating Using Interpreters and
    Communication Aids

Attend to Communication Consciously and
  • Good communication increases patient satisfaction
  • Correlation between effective communication and
    improved health outcomes have been documented

Communication Begins Before a Woman Arrives at
the Office and Continues After Her Visit
  • Smooth and successful communication must include
    discussion of
  • Womans access to the office
  • Care while in the office
  • Continuity of follow-up care after leaving the

ASTHO (Association of State Territorial Health
Officials, Washington, DC) Fact Sheet Access to
Preventive Health Care Services for Women with
Disabilities. Available online
at http//
Before the Visit
  • Make sure office is in compliance with ADA
    requirements regarding accessibility
  • Review ADA requirements regarding availability of
    interpreter, etc.
  • Make sure office staff is adequately trained
    (etiquette, transfers, etc.)
  • Set up a protocol to communicate with the woman
    BEFORE the visit to determine needs and plan
    appropriate response

Transportation Needs
  • Directions from bus stop, etc.
  • Instructions re accessible parking
  • Assistance with paratransit services

Communication Needs
  • Sign language interpreters
  • Use of other communication devices that require
    extra space or expertise

American Medical Association, available online
Other Needs
  • Appropriate area in waiting room to accommodate
    special equipment or needs
  • Transfers to and from examination equipment that
    require assistance
  • Need for larger exam room or accessible exam
  • Assistance completing medical forms

During the Visit
  • Create a conducive atmosphere
  • Explicitly discuss each team members role in
  • Use proper etiquette when working with
    interpreters or personal care assistants
  • Obtain a complete health history
  • Communicate appropriately during the examination
  • Provide pertinent counseling

Create a Conducive Atmosphere
  • Welcoming environment
  • Non-verbal cues
  • Posted non-discrimination policy
  • Appropriate educational materials on display

Explicitly Discuss Role of Each Team Member in
  • Provider
  • Woman
  • Office personnel
  • Interpreter
  • Personal care assistant

Office Staff
  • Help create and maintain a safe and efficient
    process of care
  • Guide a woman who is blind or has low vision to
    the examination room
  • Ensure safe transfer on and off of examination
  • Complete medical forms for those who do not read
  • Provide other assistance as requested

Sign Language Interpreter
  • Facilitates communication with a woman who is
  • Translates what you say word-for-word into sign
    language and what the woman who is deaf says back
    into spoken English
  • See Communicating Using Interpreters and
    Communication Aids for more information

Personal Care Assistant
  • Assists the woman to complete physical or
    cognitive tasks
  • Communicates directly to the woman
  • Does not speak for the woman

Use Proper Etiquette
  • When working with an interpreter
  • When working with personal care assistants
  • When a woman has a service animal

Etiquette with Interpreter
  • Decide where everyone will sit or stand to
    maximize communication and comfort
  • Maintain eye contact with the woman who is deaf,
    noting facial communication and other physical
  • Speak directly to the woman who is deaf, not to
    the interpreter

Etiquette with Interpreter
  • When I'm there with a Sign Language interpreter,
    the nurse always looks at the interpreter. It's
    hard for me to get eye contact. But I'm the
    patient. I don't want them speaking to me in the
    third person. I want them to speak directly to
    me. Don't refer to me as she. I feel ignored
    when they do that. It's confusing and

Iezzoni, L. ODay, B. More than Ramps
Improving Health Care Quality for People with
Disabilities. Oxford University Press,
2006. Chapter 6 page 103.
Etiquette with Personal Assistants
  • Speak directly to the woman
  • Negotiate time alone
  • Ask the woman if she wants her personal assistant
    to be present during physical exam

Etiquette with Service Animals
  • Don't pet, call out, or otherwise distract a
    working Guide Dog. A Guide Dog in harness is "on
    duty, even when sitting or lying down.
  • Some Guide Dog handlers may allow petting, but
    ask first.
  • Don't feed a Guide Dog.
  • Never grab the harness or leash from the
  • Allow the team to follow you or offer other
    assistance never tell the dog to follow you.

Obtain a Complete Health History
  • Focus on symptoms of concern to the woman
  • Obtain her complete health history as one would
    do with ANY patient

Emphasize Prevention and Wellness
  • Educate women with disabilities about
  • specific health topics, such as the need for
  • screening, prevention, and wellness
  • services.

Iezzoni L, ODay B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Recommendations,
page 31.
Avoid Making Assumptions
Example Sexual Activity
  • My clinician said You dont want birth
    control youre visually impaired! Whats that
    got to do with it? Everybodys got a life. Blind
    people do just as much in that area as sighted
    people. I dont just stay at home and sit in a

Ask Pertinent Questions
Example Screening for Abuse
  • For a woman with a disability who is being
    abused, the perpetrator is often the very person
    she relies on to provide care when she is
    vulnerable. She may, therefore, be reluctant to
    report the abuse. The abuse may take the form of
    violence or rape, but often includes more subtle
    forms as well, such as withholding care or
    medications. Women are more likely to divulge
    abuse when they are asked pertinent questions in
  • Has anyone you depend on ever refused to help
    you with…?

Nosek M, Howland C. Abuse and Women with
Disabilities. Pennsylvania Coalition Against
Domestic Violence the National Resource Center
on Domestic Violence. Available online
Review Disability-Specific Needs in Detail
  • Medical issues
  • Example skin care in a woman with paraplegia
  • Functional issues
  • Example mobility assessment in a woman with
    progressive lower extremity weakness
  • Social issues
  • Availability of needed services and support

Communicate Appropriately During the Physical Exam
  • Goals
  • Facilitate full awareness and cooperation of the
  • Maintain the womans sense of control

Describe Office Procedures Before They Are
  • Explain what needs to be done and why
  • Use simple language (cognitive disabilities)
  • Allow the woman to see or touch the instruments
    if she desires
  • Ask women with physical disabilities how it will
    be easiest to perform the exam
  • Tell women who are blind when and where you are
    going to touch before beginning
  • Obtain consent prior to proceeding

Involve Women in Treatment Decisions
  • Review options
  • Decide together which one(s) to pursue

Assessing Competence
  • Women are presumed to be competent and the burden
    of proving otherwise rests on those who would
    overturn the womans decisions.
  • A balance exists between autonomy and
    self-determination on the one side, with the
    protection of incompetent women from potential
    harm on the other.
  • Serious mental illness, a learning disability, or
    cognitive impairment per se does not render a
    woman incompetent to provide informed consent.

Assessing a Womans Decision-Making Capacity
  • Should be defined by functional deficits (due to
    mental illness, mental retardation, or other
    mental conditions) judged to be sufficiently
    great that the woman currently cannot meet the
    demand of a specific decision- making situation,
    weighed in the light of its potential

Determining Informed Consent
  • Consider the 4 Cs
  • Conscious
  • Capable of making a choice
  • Comprehension
  • Communication
  • Contact the National Association of Developmental
  • Disability Councils for State-by-State laws at
  • http//

Choosing a Proxy Decision Maker
  • The role of the Proxy, as chosen by the woman
    herself whenever possible, is to explain and
    assist in the decision-making process.

Grisso T, Appelbaum P. Assessing Competence to
Consent to Treatment. Oxford University Press,
Recommendations Should Be Pertinent, Feasible,
and Safe
  • Consider cognitive level and physical ability
  • Consider convenience factors
  • Consider safety

From Gatekeeper to Advocate
  • Serve as advocate for woman
  • Mediate between woman and managed care
  • Provide appropriate referrals to accessible and
    culturally competent resources
  • Know how to write prescriptions that will be
  • Say no to requests you feel are unjustified

Communicate Explicitly About Follow-up Care
  • Discuss the action steps each partner will take
    to ensure that appropriate follow-up occurs
  • Review how test results and other follow-up will
    be communicated

Systems Improvements
  • Creative scheduling
  • One-stop shopping, if possible
  • At a time of light scheduling and maximum
  • Use of electronic communication
  • Future directions videoconferencing

Resources for Providers
  • http//
  • http//
  • http//
  • http//

Ending Slide
  • Creating more universally usable health care
  • and services benefits all your customers,
    including those
  • patients with disabilities. Knowledge of
    existing codes and
  • standards serves as a starting point in meeting
  • guidelines. Going beyond accessibility requires
  • partnership with your patients with
    disabilities. By creating a
  • team, you can meet the intent of the law and
    foster an
  • atmosphere that welcomes everyone into your
  • care facility.
  • Removing Barriers to Health Care a Guide for
    Health Professionals online http//

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