Transcript Communication: An Introduction to Barriers and Solutions

Women
with
Disabilities
educational programs
Communication
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 Patient’s Eyes: Understanding and Promoting Patient
Centered Care. 1993; San Francisco: Jossey-Bass. Available online:
http://www.arhp.org/healthcareproviders/onlinepublications/QRGPACC.cfm
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 values
 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 experience
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, 163:2085-2092.
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 provider’s attitudes about disability
can negatively impact the woman’s
health care experience
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, O’Day, 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 wouldn’t explain anything to
me. To him everything's so visual and I’m 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, O’Day, B. More than Ramps: Improving Health Care Quality for People with Disabilities. Oxford University
Press, 2006. Chapter 8, page 144.
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
can’t hurt– you’re paraplegic, you can’t feel
anything below your waist.” Health
professionals are often ignorant about this
and treat me as though my pain isn’t real.”
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): 401–411, 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 protagonists.”
Kleinman A. The Illness Narratives. New York: Basic Books, 1988, page 57.
Attitude
Psychiatric Disability
“Telling a clinician about my psychiatric disability is really
important—for 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 you’re 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 I’m
reporting things accurately. It’s not a relationship of trust,
and that’s the thing that’s so frustrating is that you just have
to go through people. It’s traumatic. It means having to shop
again and having to shop again, and having to confront the
clinician and say, ‘You’re 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
knowledge–and who are
willing to admit when
they don’t 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 Women’s Health. Available online:
http://www.hhs.gov/od/summit/whitepaper.doc
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, O’Day B. More than Ramps: Improving Health Care Quality for People with Disabilities. Oxford University Press,
2006. Chapter 6 page 106-107.
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, O’Day B. More than Ramps: Improving Health Care Quality for People with Disabilities. Oxford University Press,
2006. Chapter 8, page 140.
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
Skills
 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 Oppression
Negative societal
attitudes about disability
Padilla M. “But You’re Not a Dirty Mexican": Internalized Oppression, Latinos & Law ,
7 Texas Hispanic Journal of Law and Policy 61-113, 65-73 (Fall 2001)
http://academic.udayton.edu/race/01race/latinos01.htm
“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 outcomes
Steinberg AG, Wiggins EA, Barmada CH, Sullivan VJ. Deaf women: experiences and perceptions of healthcare system access.
J Women's Health (Larchmt). 2002 Oct;11(8):729-741.
“Fight” Response
Distrust and disappointment
Demanding or angry manner
Alienation of health care personnel
Incomplete or inappropriate care
Poor health outcomes
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 health)
 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
Cost
 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 independently
 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
“It’s important to identify and address our beliefs so
they don’t 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 weren’t
smart enough to understand normal conversation.”
Examine and Debunk
Common Myths
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
 Do not have non-disability-related
health problems
 Have no sexual feelings/arousal
and are not sexually active
 Are promiscuous if their disability
is psychiatric
 Are trouble makers if they speak
out or complain
 Don’t know their own health
needs if their disability is
psychiatric
 Are dangerous if their disability is
psychiatric
Learn About the Disability
Experience
National Disability Council
http://www.ncd.gov/brochure.htm
Social Security Disability
http://www.socialsecurity.gov/disability
Federal Disability Web Portal
http://www.disabilityinfo.gov
Disability Resources
http://www.disabilityresources.org
Memoirs of the Disability Experience
http://katrinadisability.info/disabilitybooks.html
Academic journals and other media
http://www.uic.edu/orgs/sds/links.html#media
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 Continuously
 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:
– Woman’s access to the office
– Care while in the office
– Continuity of follow-up care
after leaving the office
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://www.astho.org/pubs/WomenwithDisabilitiesFactSheet2.pdf
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: http://www.ama-assn.org/ama/pub/category/4616.html
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 table
 Assistance completing medical forms
During the Visit
 Create a conducive atmosphere
 Explicitly discuss each team
member’s role in care
 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 Care
 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
equipment
– Complete medical forms for those who do not
read print
– Provide other assistance as requested
Sign Language Interpreter
 Facilitates communication with a woman who is
deaf
 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 cues
 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 frustrating.”
Iezzoni, L. & O’Day, 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 handler.
 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, O’Day 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 don’t want birth
control: you’re visually impaired!’ What’s that
got to do with it? Everybody’s got a life. Blind
people do just as much in that area as
sighted people. I don’t just stay at home and
sit in a rocker!”
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 private.
“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: http://www.vawnet.org/DomesticViolence/Research/VAWnetDocs/AR_disab.php
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 woman
 Maintain the woman’s sense of control
Describe Office Procedures Before
They Are Performed
 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 woman’s 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 Woman’s
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 decisionmaking situation,
weighed in the light of
its potential consequences.
Determining Informed Consent
Consider the 4 “C’s”
 Conscious
 Capable of making a choice
 Comprehension
 Communication
Contact the National Association of Developmental
Disability Councils for State-by-State laws at
http://www.nacdd.org.
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, 1998.
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
organization
 Provide appropriate referrals to accessible
and culturally competent resources
 Know how to write prescriptions that will be
approved
 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 staffing
– Use of electronic communication
 Future directions: videoconferencing
Resources for Providers
 http://www.4woman.gov/wwd/healthcare.cfm?style=module
 http://www.4woman.gov/wwd/laws.cfm?style=module
 http://www.wid.org/publications/
 http://www.hhs.gov/od/summit/JThierry.doc
Ending Slide
“Creating more universally usable health care environments
and services benefits all your customers, including those
patients with disabilities. Knowledge of existing codes and
standards serves as a starting point in meeting accessibility
guidelines. Going beyond accessibility requires a
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 health
care facility.”
Removing Barriers to Health Care: a Guide for Health Professionals; online http://origin.cdc.gov/ncbddd/women/links/removebarriers.htm
Women
with
Disabilities
educational programs