Physicians Attitudes About Issues Affecting Deaf Children Joshua Staley Julia L. Hecht, M.D. Deaf Access Program Young Childrens 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 peoples 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 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: – 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. AgreeDisagree % 11 Physician N = 28 Deaf N = 18

Exposure to sign language decreases a deaf childs ability to learn speech. AgreeDisagree %

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 EnglishTrue 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 everyones 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. TrueFalse %

Natural language development can occur if a cochlear implant is implanted early enough in a deaf babys life. AgreeDisagree % Physician N = 27 Deaf N = 18

In general, profoundly deaf infants should receive a cochlear implant. AgreeDisagree % Physician N = 26

Children diagnosed with Usher Syndrome (born deaf, vision loss by early adulthood) should receive a cochlear implant. AgreeDisagree % Physician N = 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 BabiesDeaf Babies % Physician N = 26 Deaf N = 16

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… IsolationInsight %

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 peoples 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. AgreeDisagree % Physician N = 28

Deaf adults are the best language models for deaf children. AgreeDisagree % Physician N = 27

Most hearing parents communicate effectively with their deaf children. AgreeDisagree % Physician N = 28 Deaf N = 17

Deaf parents instinctively know how to communicate with their deaf children. AgreeDisagree % Physician N = 28

Role of Deaf Adults in Deaf Childrens Lives This deaf group viewed deaf adults as having an important role in deaf childrens lives. Both the deaf group and the physician group feel physicians should be advising parents to bring deaf adults into their childrens 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 groups 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 peoples 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