physicians attitudes about issues affecting deaf children joshua staley julia l. hecht, m.d. deaf...
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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– Mode of communication / ASL / Speech– Cochlear implants– Perceptions of deaf people– Role of deaf adults in lives of deaf children
Subjects– 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– 3 as Hard of Hearing, Oral-Deaf, Deafblind
Primary Language– 80% ASL– 10% Other
Age: – 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
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Oral communication is essential for deaf people to succeed in life.
Agree Disagree
7
93 89
%
11
PhysicianN = 28
DeafN = 18
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Exposure to sign language decreases a deaf child’s ability to learn speech.
Agree Disagree
3
97 95
5
%
ASL is a visual representation of English.
OR
ASL is a true language, distinct from English with its own syntax and grammar.
ASL is…
Visual English True Language
0
100 95
5
%
0
20
40
60
80
100
Physician Deaf Physician Deaf
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.
True False
3
97
84
16
%
0
20
40
60
80
100
Physician Deaf Physician Deaf
Natural language development can occur if a cochlear implant is implanted early enough
in a deaf baby’s life.
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Agree Disagree
74
26
83
17
%
PhysicianN = 27
DeafN = 18
In general, profoundly deaf infants should receive a cochlear implant.
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Agree Disagree
50 50
95
5
%
PhysicianN = 26
Children diagnosed with Usher Syndrome (born deaf, vision loss by early adulthood)
should receive a cochlear implant.
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Agree Disagree
70
30
84
16
%
PhysicianN = 23
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…
Hearing Babies Deaf Babies
58
6
94
42%
PhysicianN = 26
DeafN = 16
0
20
40
60
80
100
Physician Deaf Physician Deaf
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…
Isolation Insight
3
97 100
0
%
0
20
40
60
80
100
Physician Deaf Physician Deaf
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.
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Agree Disagree
64
36
16
84
%
PhysicianN = 28
Deaf adults are the best language models for deaf children.
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Agree Disagree
52 48
5
95
%
PhysicianN = 27
Most hearing parents communicate effectively with their deaf children.
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Agree Disagree
50
6
94
50%
PhysicianN = 28
DeafN = 17
Deaf parents instinctively know how to communicate with their deaf children.
0
20
40
60
80
100
Physician Deaf Physician Deaf
Strongly
Moderately
Agree Disagree
32
95
5
68
%
PhysicianN = 28
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– Acknowledge limitations of data
Historical approach– 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
“Be the change you wish to see
in the world.”
- Gandhi
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