Download Physician Attitudes about Issues Affecting Deaf Children

Physicians’ Attitudes About
Issues Affecting Deaf Children
Joshua Staley
Julia L. Hecht, M.D.
Deaf Access Program
Young Children’s Health Center,
Albuquerque, New Mexico
Overview
Introductions
 Objectives
 Background
 Methods
 Data
 Conclusions and future directions
 Discussion

Objectives

Long term:
–

Create educational curriculum for physicians regarding creating
medical home for deaf and hard of hearing children.
Short term:
–
–
Determine baseline attitudes of pediatricians regarding issues
affecting deaf children
Pilot study to test methodology and outcome
Definitions

Attitude:
A learned state that creates an inclination to respond to stimulus in
a particular way: positive or negative.

Pathological perspective of deafness:
The deaf individual is seen as disabled or impaired. His deafness
is seen as a problem to be cured.

Cultural perspective of deafness:
Deaf individual is viewed as a member of a linguisitic or ethnic
minority group.
Background

Parent decisions about communication, school setting,
hearing aids, speech therapy based on advice of
pediatricians

Literature today confirms strong physician influence
regarding communication mode and cochlear implants

Medical schools / residency programs do not train
physicians to care for deaf and hard of hearing people

We suspect physician attitudes play a significant role in
the advice they give to parents
Hypotheses

We hypothesized that physicians’ attitudes regarding
issues affecting deaf children are based on a
pathological perspective of deafness.

We hypothesized that deaf people’s attitudes will be a
contrast based on a cultural perspective.
Methods

Survey of 32 questions
–
–
–
–

Subjects
–
–

Mode of communication / ASL / Speech
Cochlear implants
Perceptions of deaf people
Role of deaf adults in lives of deaf children
Physicians N=29
Deaf Adults N=19
Two versions
–
–
Written English
Video ASL
Subject Characteristics:
Physicians






100 % pediatricians
Most primary care clinicians
Range of <10 to >30 years experience
50% practice in an academic setting
25% have a family member or friend who is deaf or hard
of hearing
One knows signed language
Subject Characteristics:
Deaf Adults

Majority self-identify as Deaf
–

Primary Language
–
–

80% ASL
10% Other
Age:
–
–

3 as Hard of Hearing, Oral-Deaf, Deafblind
26 - 56 years
Median: 33 years
Educational Background
–
–
–
Oral, mainstream, residential deaf school
33% in oral setting through high school
83% went to college, 50% have advanced degrees (MA or PhD)
Data

Mode of communication / ASL / Speech

Cochlear implants

Perceptions of deaf people

Role of deaf adults in lives of deaf children
Communication
“…Speech is the privilege of man, the sole and
certain vehicle of thought…”
- Italian Delegate to World Congress to Improve
the Welfare of the Deaf and Blind, Milan, 1880
Oral communication is essential for deaf
people to succeed in life.
100
93
89
80
60
%
Strongly
Moderately
40
Physician
N = 28
20
Deaf
N = 18
11
7
0
Physician
Deaf
Agree
Physician
Deaf
Disagree
Exposure to sign language decreases a deaf
child’s ability to learn speech.
97
100
95
80
60
%
Strongly
Moderately
40
20
3
5
Physician
Deaf
0
Agree
Physician
Deaf
Disagree
ASL is a visual representation of English.
OR
ASL is a true language, distinct from English
with its own syntax and grammar.
ASL is…
100
100
95
80
60
%
40
20
0
0
Physician
5
Deaf
Visual English
Physician
Deaf
True Language
Communication



The deaf group and the physician group felt the
same about these communication issues
Physicians have a positive attitude about ASL
that is not consistent with historical
documentation
Is this generalizable?
Cochlear Implants
“…a lot of hard work on everyone’s part is
necessary to continue to foster the “common
ground” that is emerging in the debate about the
appropriateness of pediatric cochlear implants.”
- Christiansen, J. and Leigh, I. Children With Cochlear Implants: Changing
Parent and Deaf Community Perspectives. Arch Otolaryngol Head Neck Surg.
2004;130:673-7
A baby who receives a cochlear implant by
age one year usually will not need auditory,
speech, or lip reading training.
97
100
84
80
60
%
40
16
20
3
0
Physician
True
Deaf
Physician
False
Deaf
Natural language development can occur if a
cochlear implant is implanted early enough
in a deaf baby’s life.
100
80
83
74
60
%
Strongly
Moderately
40
17
20
Physician
N = 27
26
Deaf
N = 18
0
Physician
Deaf
Agree
Physician
Deaf
Disagree
In general, profoundly deaf infants should
receive a cochlear implant.
95
100
80
60
%
50
Strongly
50
Moderately
40
Physician
N = 26
20
5
0
Physician
Deaf
Agree
Physician
Deaf
Disagree
Children diagnosed with Usher Syndrome
(born deaf, vision loss by early adulthood)
should receive a cochlear implant.
100
84
80
70
60
%
Strongly
Moderately
40
30
Physician
N = 23
16
20
0
Physician
Deaf
Agree
Physician
Deaf
Disagree
Cochlear Implants



Responses of the deaf group and physician
group range from shared attitudes to mostly
divergent attitudes.
Members of the deaf group tended to feel
similarly about all 4 statements
Significant variation seen among the physicians
Perceptions of Deaf People
“The deaf community regards the birth
of each and every deaf child as
a precious gift.”
- Paddy Ladd, “British Deaf Leader”
Most deaf parents want to have hearing
babies.
OR
Most deaf parents want to have deaf babies.
Most deaf parents want…
94
100
80
60
58
%
42
Physician
N = 26
40
Deaf
N = 16
20
6
0
Physician
Deaf
Hearing Babies
Physician
Deaf
Deaf Babies
Immersion in deaf culture causes deaf
people to isolate themselves from the rest
of society.
OR
Deaf culture offers information, insight, and
problem solving techniques for deaf
people navigating life in a hearing world.
Deaf culture…
100
97
100
Physician
Deaf
80
60
%
40
20
3
0
Physician
0
Deaf
Isolation
Insight
Perceptions of Deaf People




A lot of anecdotal evidence - documented and
undocumented- that deaf people want deaf babies
Deaf group believes this to be true
40% of physician group knows this
Almost all of the physicians saw deaf culture as a
positive aspect of deaf people’s lives
The Role of Deaf Adults in the Lives
of Deaf Children
“I could only know what it means to be a deaf
person from the outside in, by means of mental
constructions and empathic leaps. Conversely, deaf
people have a privileged access to what are the
crucial issues… they can guide the outsider to the
richest vein.”
- Harlan Lane, The Mask of Benevolence, 1992
In the medical setting, recommendations for
deaf children should include exposure to
deaf adults.
100
84
80
64
60
%
Strongly
Moderately
36
40
Physician
N = 28
16
20
0
Physician
Agree
Deaf
Physician
Deaf
Disagree
Deaf adults are the best language models
for deaf children.
95
100
80
60
%
52
Strongly
48
Moderately
40
Physician
N = 27
20
5
0
Physician
Agree
Deaf
Physician
Deaf
Disagree
Most hearing parents communicate
effectively with their deaf children.
94
100
80
60
%
50
Strongly
50
Moderately
40
Physician
N = 28
20
Deaf
N = 17
6
0
Physician
Agree
Deaf
Physician
Deaf
Disagree
Deaf parents instinctively know how to
communicate with their deaf children.
95
100
80
68
60
%
Strongly
Moderately
40
32
Physician
N = 28
20
5
0
Physician
Agree
Deaf
Physician
Deaf
Disagree
Role of Deaf Adults in Deaf
Children’s Lives



This deaf group viewed deaf adults as having an important role in
deaf children’s lives.
Both the deaf group and the physician group feel physicians should
be advising parents to bring deaf adults into their children’s lives
Among physicians, variable attitudes regarding deaf adults as
language models for deaf children.
Conclusions

Among the physicians, there was significant variation in attitudes about
issues affecting deaf children

In many areas some or all of the physician group had attitudes in direct
contrast to the pathological perspective of deafness

Physicians attitudes towards deaf people may be more positive than is
documented in the literature

Physicians may be able to integrate aspects of deaf culture into a
medical home for deaf children

For the most part, the deaf group’s attitudes were consistent with a
cultural / wellness perspective of deafness.

Some significant divergence between the physician and deaf groups
suggests a need for further investigation in these areas.
Future Directions

Large scale study with a diverse sample of deaf adults
and physicians

Include ENT and family practitioners

Further investigation of areas of divergence between
the physician and the deaf groups

Development of guidelines, educational materials, and
programs for creating a culturally competent medical
home for deaf and hard of hearing children.
Physician Curriculum

Evidence-based approach
–

Historical approach
–




Acknowledge limitations of data
Acknowledges the value of deaf people’s experiences
Adopts a wellness approach that seeks to maximize the
full potential of the whole child
Integrates the medical and cultural perspectives
Created by a team of parents, deaf adults, and
physicians
Addresses issues of communication access for deaf
children in the medical setting including ADA
“Be the change you wish to see
in the world.”
- Gandhi