Assessing Deaf Cultural Competency: Attitudes and Training of Recent Genetic Counseling Graduates

Assessing Deaf Awareness- Training and Attitudes of Recent Genetic Counseling Graduates

Thank you for choosing to participate in my survey.

The goal of this project is to evaluate Deaf awareness among genetic counselors to determine if there are associations between training and experiences, and Deaf awareness, knowledge and attitudes towards Deaf culture. We are also interested in counselors' opinions on how to improve Deaf awareness training in genetic counseling programs.

You are being asked to participate in an online survey for a research project conducted through Brandeis University. The University requires that you give your approval to participate in this project. You must be at least 18 years old to take this survey.

Your participation in the study is completely voluntary. If you decide to participate now, you may change your mind and stop at any time, for any reason, without penalty. You can choose to not answer an individual question or you may skip any section of the survey by clicking “Next” at the bottom of the survey page to move to the next question.

By clicking the "Next" button, you are consenting to participate in this study.

The following questions pertain to your experience as a Genetic Counselor

Q1 <br>How many years have you been practicing as a Genetic Counselor?

Up to 1 year (1) 1-2 years (2) 2-3 years (3) 3-4 years (4) 4-5 years (5)

Q2 What is your primary counseling setting as a Genetic Counselor?(Select all that apply)<br>

Adult (1) Cancer (2) General Genetics (3) Laboratory (4)

Pediatric (5) Prenatal (6) Other (Please specify) (7) ____________________

Q3 How long have you been at your current position?

less than 6 months (1) 1 year (2) 2 years (3) 3 years (4) 4 years (5) 5 years (6)

Q4 In which fields have you worked? Select all that apply.

Adult (1) Cancer (2) General Genetics (3) Laboratory (4) Prenatal (5) Pediatric (6) Other (7) ____________________

The following questions address interactions with the Deaf Community:

Q5 <br>Are you Hearing, Hard of Hearing, or Deaf?

Hearing (1) Hard of Hearing (2) Deaf (3)

Q6 Do you consider yourself part of the Deaf community?

Yes (1) Occasionally (2) No (3)

Q7 Do you have a family member who was born deaf?

Yes (1) No (2)

If No Is Selected, Then Skip To Do you have culturally Deaf friends, ...

Q8 Which family member was born deaf? Select all that apply.

Child (1) Mother (2) Father (3) Brother/Sister (4) Uncle/Aunt (5) Grandparent (6) Cousin (7) Other (Please specify) (8) ____________________

Q9 Do you have culturally Deaf friends, i.e., who identify with the Deaf community

Yes (1) I do not know (2) No (3)

Q10 Do you have deaf friends who do not identify with the Deaf community?

Yes (1) I do not know (2) No (3)

Q11 How often do you interact with deaf or hard of hearing people outside of working as a genetic counselor?

Never (1) Less than Once a Month (2) Once a Month (3) 2-3 Times a Month (4) Once a Week (5) 2-3 Times a Week (6) Daily (7)

Q12 Where do these interactions take place?

At home (1) Circle of friends (2) Volunteering (3) Work other than genetic counseling (4) Other (Please specify) (5) ____________________

Q13 Do you have deaf or hard of hearing colleagues at your workplace?

Yes (1) Not sure (2) No (3)

Q14 Do you counsel deaf patients at your current job?

Yes (1) No (2)

Q15 How many deaf patients have you counseled in the past year?

None (1) 1-10 (~less than once a month) (2) 11-20 (~2x a month) (3) 21-48 (~once a week) (4) More than 48 patients (more than once a week) (5)

Q16 At which Genetic Counseling specialty did you encounter the most deaf patients?

Adult (1) Cancer (2) General Genetics (3) Laboratory (4) Pediatrics (5) Prenatal (6) Other (Please Specify) (7) ____________________ Not Applicable (8)

Q17 <p>When do you ascertain your deaf patients’ preferred mode of communication?</p>

Inquire ahead of appointment (1) Inquire at the beginning of the appointment (2) Inquire during the appointment (3) I do not inquire (4) Never had a deaf patient (5)

Q18 What modes of communication have you used at work to interact with your deaf patients?

Certified ASL interpreter (1) Patient’s family member or friend acts as interpreter (2) Your own knowledge of ASL (3) Relying on the patient's ability to lip read (4) Hand gestures (5) Writing back and forth (6) Never had a deaf patient (7) Other (Please specify) (8) ____________________

Q19 How often have you used a certified American Sign Language (ASL) interpreter when counseling a deaf patient whose preferred language is ASL?

Never had a deaf patient (1) Never (2) Occasionally (3) Most of the time (4) Every time (5)

Q20 Do you know how to secure the services of a certified ASL interpreter if needed?

Yes (1) No (2)

Q21 Have you taken courses in ASL?

Yes (1) No (2)

Q22 How well can you communicate in ASL?

Not at all (1) Poorly (2) Moderately (3) Fluently (4)

Q23 On a scale from 1 to 5, how interested are you in learning ASL?

No Interest (1) (1)

Somewhat Interested (2)

(2)

Interested (3) (3)

Very interested (4)

(4)

Currently taking ASL lessons/

Already know ASL (5) (5)

Interest in learning ASL

(1)

Q24 If interested in learning ASL, what motivates you to learn ASL?

The following questions address Deaf awareness training

Q25 <br>Did you have any Deaf awareness training in your genetic counseling program?

Yes (1) No (2)

If No Is Selected, Then Skip To The Genetic Counseling Cultural Compe...

Q26 Who conducted the Deaf awareness training?

Genetic Counseling program instructor (1) Member of the Deaf community (2) Parent of a deaf child (3) Child of a deaf parent (4) Member of a deaf advocacy group (5) Licensed American Sign Language interpreter (6) Other (Please specify) (7) ____________________

Q27 What tools did your graduate program use to increase your Deaf awareness?<br>Please select all that apply.

Readings (1) Movies/Documentaries (2) Guest Lecturers (Hearing) (3) Guest Lecturers (Deaf) (4) Discussions (5) Field Trips (6) Role Plays (7) Other (Please Specify) (8)

Q28 <p>In the space provided please provide the name of any learnings tools that you found particularly helpful </p><p>(e.g. names of movies, guest lecturers, online trainings, field trip sites, etc.</p><p> </p>

Q29 What topics were covered during the Deaf awareness training?

American Sign Language interpreters (1) Cochlear implants (2) Communicating with a Deaf individual (3) Deaf community and culture (4) Genetics of deafness (5) Introduction to American Sign Language (6) Relationship between culture and langauge (7) Terminology and types of deafness (8) Other (Please specify) (9) ____________________

Q30 What was the duration of the deaf awareness training you received? (Ex. 1 hour class, 2 day training, etc.)

1-2 hour class (1) Half a day training (2) 1 day training (3) 2 day training (4) 3-4 day training (5) 1 week long training (6) 1 semester internship (7) Other (Please specify) (8) ____________________

Q31 Please describe other aspects of your Deaf awareness training if they were not addressed in the previous questions

Q32 The Genetic Counseling Cultural Competence Toolkit was created by the 2009 JEMF award winner, Nancy Steinberg Warren to promote culturally competent genetic counseling by using online learning modules. <br><br>In this toolkit, there is a module on "Risk Assessment/Inheritance/Counseling and Deaf Culture". <br><br><br>Are you aware of the Genetic Counseling Cultural Competence Toolkit?

Yes (1) No (2)

If No Is Selected, Then Skip To To what extent do you agree or disagr...

Q33 How have you applied the Genetic Counseling Competence Toolkit in your counseling practices?

Have only skimmed the toolkit, not fully explored (1) Fully explored the toolkit but do not think it is helpful for practice (2) Fully explored the toolkit and intend to apply to practice (3) Fully explored and have applied some learning from it to practice (4) Fully explored and fully apply it to practice (5) Other (Please specify) (6) ____________________

Q34 For what purposes have you used the Genetic Counseling Competence Toolkit?

Q35 <br>To what extent do you agree or disagree with the following statements:

Strongly Disagree

(1)

Disagree (2)

Neither Agree nor Disagree

(3)

Agree (4) Strongly Agree (5)

You are interested in participating in the "Risk

Assessment/Inheritance/Counseling and Deaf Culture" online module to increase your Deaf awareness.

(1)

You think Genetic Counseling programs should incorporate the

Genetic Counseling Cultural Competence Toolkit into their

graduate training. (2)

Q36 For the following questions, please click on the answer that best describes your attitude towards Deaf awareness training

Strongly disagree (1)

Disagree (2) Neither Agree nor Disagree

(3)

Agree (4) Strongly Agree (5)

Deaf awareness

training was sufficient

during your graduate

training (1)

Genetic counseling programs

should have more

emphasis on deaf

awareness (2)

Having deaf awareness

training would help you

become a better

counselor for the Deaf. (3)

Q37 <br>The following statements relate to deafness and Deaf culture.<br>Please state to what extent you agree or disagree with the following statements

Strongly Disagree (1)

Disagree (2) Neither Agree nor Disagree

(3)

Agree (4) Strongly Agree (5)

1. Deaf couples should receive genetic counseling to avoid having

deaf children. (1)

2. Deaf children

should learn to speak to

communicate with hearing parents. (2)

3. I would like to have more deaf friends.

(3)

4. Deaf schools and deaf clubs

create deaf “ghettos.” (4)

5. Deaf people should learn

speech rather than sign

language. (5)

6. Deaf people are

handicapped. (6)

7. More research

should be done to find

cures for deafness. (7)

8. Deaf children

should be taught in sign language. (8)

9. Hearing children of

deaf parents are at risk of

emotional deprivation.

(9)

10. Deaf people are

safe drivers. (10)

11. I would like to have more

deaf colleagues.

(11)

12. Deaf people should

learn to lip-read. (12)

13. Interpreters

should be available for

deaf people at work. (13)

14. Deaf people should automatically receive help in

their home environment.

(14)

15. All deaf people should

be offered corrective

surgery. (15)

16. Training more

professionals to work with

deaf clients would be a

waste of time. (16)

17. Having a deaf colleague would cause problems in

the workplace. (17)

18. Deaf people are

physiologically impaired. (18)

19. Deaf people should not be viewed as “impaired.”

(19)

20. I would like to see more

deaf people at club/societies I

attend. (20)

21. Having a deaf friend would be

difficult. (21)

22. Deaf people have

their own culture. (22)

Questions 41-46 pertain to Deaf Culture in the Medical Setting. <br><br>Please select the best answer to the following questions.

Q38 <br>A cochlear implant:

Will allow a deaf adult to immediately begin hearing and understanding oral conversations (1) Destroys any residual hearing in the ear that the patient may have had (2) Corrects for any type of hearing loss (3) Is desired by at least 90% of deaf people (4) Do not know (5)

Q39 In a medical setting, it is the right of the deaf patient:<br>(Select all that apply)

To express a preference for a particular interpreter (1) To be provided an interpreter by the provider (2) To determine how much personal information he/she wants to disclosed in an interpreted situation

(3) Do not know (4)

Q40 The hospital has arranged for you to give a presentation on an important health topic with the assistance of an ASL interpreter. The audience, which consists mainly of deaf patients, are all socializing prior to the presentation. You are ready to begin your presentation. You should:<br>(Select all that apply)

Stand on stage and wait patiently for the audience to settle down (1) Flick the light on and off several times in order to get the audience's attention (2) Clap loudly (3) As the interpreter to sign that you are ready to begin (4) Do not know (5)

Q41 In an consultation room, where would you suggest the patient and interpreter to sit? <br>

Place the interpreter beside the patient. The patient and the interpreter are facing the provider (1) Place the interpreter beside the provider. The provider and interpreter are facing the patient (2) Place the interpreter at an equal distance between the provider and the patient (3) Do not know (4)

Q42 You have a deaf couple who declines to have their newborn baby's hearing tested. You should: <br>

Tell them this is required by law, and that it has to be done for their baby's benefit (1) Tell them it is their decision, but explain that this lack of knowledge will put their baby at risk (2) Accept their decision (3) Do not know (4)

Q43 You go to get your patient from the waiting room. You call for your patient several times. Others in the room point to a person reading a magazine and say "She's deaf". You should:<br>(Select all that apply)

Approach the patient and gently tap her on the shoulder (1) Approach the patient and call their name louder (2) Approach the patient making small gestures in her field of vision to try to get her attention (3) Do not know (4)

Q44 The following questions pertain to Deaf Culture in the Medical Setting. <br>Please identify the following statements as either True or False.

True (1) False (2)

1. Only 30% of the English language can be accurately lip

read (1)

2. You are running considerably behind schedule. Your deaf

patient is waiting with his/her interpreter. The interpreter is

ethically bound to wait with the patient until you are ready to

see them. (2)

3. ASL is a pictorial language that produces a word-for-word

translation of what is being said in English. (3)

4. The majority of hearing parents with deaf children never

learn to sign. (4)

5. When communicating with a deaf patient through an

interpreter, you should face the interpreter and explain to the interpreter what the patient

needs to know. (5)

6. Trying to help cure your patient's deafness should be

your top priority (6)

7. Because deaf people rely upon printed forms of

information, their literacy is equal to or better than the

general public. (7)

8. A good interpreter will be able to step out of his/her

interpreting role in order to explain to the provider what the patient is really trying to say. (8)

9. When there is a dominant source of light, such as a

window, your deaf patient should be seated with his/her

back to the light source and you should be seated facing the light

source. (9)

10. For an infant, there is very little that can be done to

improve an infant's hearing due to its age (10)

11. When speaking to a deaf patient through an interpreter you should speak each word

very slowly, to allow the interpreter time to sign or

fingerspell your words. (11)

12. For most members of the deaf community, English is their

primary language. (12)

13. When a deaf patient is hospitalized, the entire staff should be notified that the

patient is deaf. (13)

14. When hiring an interpreter, the minimum time per session is

two hours. (14)

15. At the end of the health care visit, the interpreter should

again review the information with the patient. (15)

16. Early in the conversation, your patient mentions to you

that he has Usher's syndrome. This information will influence

how you communicate with him. (16)

17. Deaf patients generally do not participate in support groups such as those that help patients cope with disease or death. The

main reason for this is due to the language barrier. (17)

18. On average, deaf patients report that they are unable to

convey adequate information to their doctors. (18)

19. Less than 50% of physicians

who have deaf patients use a certified interpreter. (19)

20. Working with other minority and/or disabled population will

adequately prepare a health care provider to work with the

deaf. (20)

21. 90% of deaf people have hearing parents. (21)

22. If a child is found to have a hearing loss, you should also

refer the child to an optometrist. (22)

23. It is the patient's responsibility to schedule the

interpreter if they think one will be needed. (23)

24. You have complicated information to communicate to

a deaf patient, so it would be wise to tell the patient to bring

along a friend or family member to assist with the interpretation.

(24)

25. If the patient requests an interpreter for a visit with their

health care provider, it is the patient's responsibility to pay for

the interpreter. (25)

26. If a deaf patient requests an interpreter, you may ask your nurse, who has taken several semesters of ASL classes, to

interpret for the consultation. (26)

27. If you suspect hearing loss in an infant, you should make a note to recheck the infant’s

hearing on the next visit. (27)

28. American Disabilities Act requires an interpreter be

present whether the patient wants one or not. (28)

Please answer the following questions pertaining to demographics

Q45 <br>What is your gender?

Male (1) Female (2)

Q46 What is your age?

Q47 Please select your ethnicity

African American (1) Asian (2) Caucasian (3) Hispanic/Latin American (4) Native American (5) Pacific Islander (6) Other (7) ____________________

Q48 Which Genetic Counseling Program did you graduate from?

Arcadia University (1) Boston University School of Medicine (2) Brandeis University (3)

California State University- Stanislaus (4) Case Western Reserve University (5) Howard University (6) Indiana University Medical Center (7) Johns Hopkins Univ. / National Center for Human Genome Research (8) Long Island University- C.W. Post (9) McGill University (10) Medical College of Virginia (11) Mt. Sinai School of Medicine (12) Northwestern University Medical School (13) Sarah Lawrence College (14) Stanford University (15) University of Alabama (16) University of Arkansas (17) University of British Columbia (18) University of California-Irvine (19) University of Cincinnati College of Allied Health Sciences (20) University of Colorado Health Science Center (21) University of Maryland School of Medicine (22) University of Michigan- Ann Arbor (23) University of Minnesota (24) University of North Carolina- Greensboro (25) University of Pittsburgh (26) University of South Carolina (27) University of Texas Graduate School of Biomedical Sciences (28) University of Toronto (29) University of Utah Health Sciences Center (30) University of Wisconsin- Madison (31) Wayne State University (32) Other (Please Specify) (33)

Answer If Which Genetic Counseling Program did you graduate from? Other (Please Specify) Is Selected

Q48 Which Genetic Counseling Program did you graduate from?

Q49 What year did you graduate from your program?

2012 (1) 2011 (2) 2010 (3) 2009 (4) 2008 (5) Other (6) ____________________

Q50 Do you have any suggestions/opinions/comments on how to increase genetic counselor's Deaf awareness towards the Deaf community?