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Physicians’ Attitudes About Issues Affecting Deaf Children

This study explores the attitudes of pediatricians towards issues affecting deaf children, with a focus on communication methods and cochlear implants. The goal is to create an educational curriculum for physicians to improve their care for deaf and hard of hearing children.

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Physicians’ Attitudes About Issues Affecting Deaf Children

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  1. 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

  2. Overview • Introductions • Objectives • Background • Methods • Data • Conclusions and future directions • Discussion

  3. 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

  4. 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.

  5. 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

  6. 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.

  7. 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

  8. 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

  9. 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)

  10. Data • Mode of communication / ASL / Speech • Cochlear implants • Perceptions of deaf people • Role of deaf adults in lives of deaf children

  11. 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

  12. Oral communication is essential for deaf people to succeed in life. 93 89 % Physician N = 28 Deaf N = 18 11 7 Agree Disagree

  13. Exposure to sign language decreases a deaf child’s ability to learn speech. 97 95 % 5 3 Agree Disagree

  14. ASL is a visual representation of English. OR ASL is a true language, distinct from English with its own syntax and grammar.

  15. ASL is… 100 95 % 5 0 Visual English True Language

  16. 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?

  17. 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

  18. A baby who receives a cochlear implant by age one year usually will not need auditory, speech, or lip reading training. 97 84 % 16 3 True False

  19. Natural language development can occur if a cochlear implant is implanted early enough in a deaf baby’s life. 83 74 % Physician N = 27 Deaf N = 18 26 17 Agree Disagree

  20. In general, profoundly deaf infants should receive a cochlear implant. 95 % 50 50 Physician N = 26 5 Agree Disagree

  21. Children diagnosed with Usher Syndrome (born deaf, vision loss by early adulthood) should receive a cochlear implant. 84 70 % 30 Physician N = 23 16 Agree Disagree

  22. 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

  23. 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”

  24. Most deaf parents want to have hearing babies. OR Most deaf parents want to have deaf babies.

  25. Most deaf parents want… 94 58 % 42 Physician N = 26 Deaf N = 16 6 Hearing Babies Deaf Babies

  26. 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.

  27. Deaf culture… 97 100 % 3 0 Isolation Insight

  28. 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

  29. 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

  30. In the medical setting, recommendations for deaf children should include exposure to deaf adults. 84 64 % 36 Physician N = 28 16 Agree Disagree

  31. Deaf adults are the best language models for deaf children. 95 % 52 48 Physician N = 27 5 Agree Disagree

  32. Most hearing parents communicate effectively with their deaf children. 94 % 50 50 Physician N = 28 Deaf N = 17 6 Agree Disagree

  33. Deaf parents instinctively know how to communicate with their deaf children. 95 68 % 32 Physician N = 28 5 Agree Disagree

  34. 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.

  35. 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.

  36. 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.

  37. 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

  38. “Be the change you wish to see in the world.” - Gandhi

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