Preparing for the Cancer Genetic Counseling Session
Jean is a deaf woman who is seeking cancer genetic counseling. How would you prepare for this case?
Consider how you would or would not modify the following case preparation activities for a cancer genetic counseling session with Jean:
- Send an information packet before the session
- Access medical records
- Request information about family members
- Prepare visual aids
- Gather information about genetic testing
- Identify educational materials
Here are some suggestions for working successfully with individuals who are d/Deaf:
Send an information packet before the session
Describe genetic counseling
It is possible that Jean may be unfamiliar with the genetic counseling process or that she holds personal opinions about genetic counseling. One study showed that 49.5% of deaf and hard of hearing people did not know what genetic counseling was, and 28% thought that genetic counseling aims to reduce deafness in society (A Middleton, Emery, & Turner, 2010). Describing genetic counseling may make Jean more familiar with the process and better able to benefit from genetic counseling.
Plan extra time
When working with a deaf client who speechreads or communicates through an ASL interpreter, be sure to schedule plenty of extra time to cover the necessary information. Explicitly describe how much time the session may take in the information packet. It also may be necessary to meet in two face to face sessions. These options should be discussed with the client.
Access medical records
Request medical records before the session
As discussed, Jean may be unfamiliar with medical terms or have limited background health information. It may be especially important to get Jean’s medical information before the session. A request for medical records should be sent to Jean’s doctor. It is also critical to send a form eliciting Jean’s health history before the session to give Jean plenty of time to access information about her health history. This limits the number of health and family history questions Ellen will have to ask Jean through the interpreter. Instead, Ellen will be able to focus on reviewing and clarifying the information provided on the form and discussing the important points with Jean.
Request information about family members
Collect family history prior to the session
In a cancer genetic counseling session, collecting a family history is crucial to conducting an appropriate risk assessment. As we discussed, when the patient is deaf, her knowledge of family history information may be limited. To help the client obtain this information, sending forms written at an appropriate reading level with questions about the client’s family history enables the client to obtain input from family members as needed. Information about the client’s family members may also need to be documented through requests for medical records. It makes sense to take care of most of this aspect of the session beforehand, to leave more time the parts of the session that must be facilitated by the ASL interpreter.
Prepare visual aids
Use a variety of counseling visual aids
Be sure to use counseling visual aids to complement the genetic counseling discussion. Pay attention to the words written on the aids to be sure they are not excessively complex. You may need to create new low literacy counseling aids. We typically assume that a genetic counseling client is proficient in English, although the average deaf high school graduate reads at a 4th grade level (Scheier, 2009). Visual aids may enhance communications within a genetic counseling session for a patient who is deaf, especially if they do not include excessive text. As this is a cancer genetic counseling session, it is also particularly important to use visual aids that help the client and counselor process the meaning of personal, predictive and family risks, as well as the risks/benefits of genetic testing options. Israel et al. (1992) suggests modifying “how and when” visual charts are used when working with deaf clients so the client will not miss valuable information when transitioning from one visual medium to another. For example, the counselor should first explain the content of the illustration orally through the interpreter, maintaining eye contact, and then proceed to use the visual aid.
Gather information about genetic testing
Plan to explore culturally-grounded views on genetic testing
The cancer genetic counseling session typically involves a discussion of genetic testing. Given the sensitivity of individuals who are deaf regarding genetic testing for deafness itself, the genetic counselor should allow the client to express her views on genetic testing in general.
Identify educational materials
Use literacy and culturally appropriate educational materials
Consider the ability of your patient to understand any written information you use in the session and additional educational materials you plan to give her to take home. It may be helpful to ask Jean general questions to get a general sense of her health literacy. However, determining literacy and health literacy levels in individuals who are deaf does not correlate with health literacy levels of comparable non-English speakers. People who are deaf cannot sound out words, a technique that hearing people use to figure out the meaning of unfamiliar words (http://www.healthliteracy.com/article.asp?pageID=3772). The genetic counselor should not assume that standardized tests of health literacy in adults, such as the TOFHLA (Test of Functional Health Literacy in Adults) apply to deaf clients. Indeed, there is little research on assessing health literacy in deaf adults. The counselor should turn to the ASL interpreter for assistance in determining the appropriateness of any educational materials for clients who are deaf. Take advantage of educational materials that have been developed in signed language if this is the client’s preferred method of communicating. The http://www.deafmd.org/ website provides health information in American Sign Language for the Deaf and hard of hearing population. This website describes tests such as mammography and colonoscopy that are relevant to cancer genetic counseling sessions.
Meet with the interpreter
If there has been an interpreter assigned to the case, it is appropriate for the genetic counselor to meet with the interpreter before the session. Medical interpreters may be knowledgeable about some of the procedures involved in a genetic counseling appointment, but they may have limited exposure to the specific genetic terminology needed in this case. Meeting the interpreter before the appointment to review the counseling process and any anticipated genetic terms will facilitate communication during the session. Some interpreters may find it useful to have a list of words and their meanings prior to the counseling session.
In 1983, Gallaudet College published a booklet “Signs for Genetic Counseling” (Boughman & Shaver, 1983) to attempt to standardize some signs that are commonly used in genetic counseling (gene, genetics, chromosome, dominant, recessive, X-linked, pedigree, Usher syndrome, Rubella syndrome, Down syndrome, Waardenburg syndrome, amniocentesis) . This short booklet is no longer in print, although it is available from the Gallaudet University Archives, 800 Florida Ave., N.E., Washington, DC 20002 for a nominal printing fee.
Currently, there are many online resources available to help counselors communicate in ASL with clients who are deaf. Suggested sites that may enhance your learning are listed below. Try to learn some simple signs, such as how to introduce yourself. Your efforts will mean a lot to the client.
You Tube video on introducing yourself in sign language.
ASL-STEM Forum (genetics topics)
American Sign Language University (numerous topics)
American Sign Language Browser, Michigan State University (numerous topics)
Collaborate with the interpreter
If you know that a deaf patient prefers to communicate in ASL, a trained ASL interpreter should be seamlessly integrated into the dynamics of the genetic counseling session. It is important to use a trained interpreter rather than family members or friends. The interpreter will want to sit a little behind and to the side of the genetic counselor to allow the patient to clearly see both the interpreter and the counselor, and to speechread if desired. As we discussed earlier, the interpretation of nonverbal cues is particularly important when working with clients who are deaf. Ask the interpreter to point out potential misunderstandings.
Send a patient letter
It may also be helpful to send a detailed summary letter to clients with whom you have communicated primarily through an interpreter. The letter may include a written summary of the session, as well as a copy of the visual aids that were used. The letter provides another opportunity to clearly and logically present factual information using simple words and to summarize your understanding of what happened during the session. Be sure to encourage the client to forward any questions or concerns.