The Use of an Interpreter in Comminicating Genetic Information
By Gisela Rodriguez, LCSW, November, 1999

Information communicated in a genetic consultation is very specific, at times technical, complex, and often emotionally charged for the patient and family. Additionally, the patient may come to a genetic session ill equipped intellectually and emotionally. Individuals may not understand - why they are being referred, the meaning of genetic terms, and the implications of testing. They may come to the appointment in "ignorant bliss", or with a medium to high level of anxiety, which impedes their ability to hear the information. The graduate school trained genetic counselor and medical geneticist should be able to overcome these obstacles. These communication difficulties are seen in contacts with individuals of all cultures, educational levels and socioeconomic backgrounds. The following are recommendations for the use of interpreters when a language barrier exists in the patient-primary health care provider's genetic communication process.

This genetic center has been utilizing trained genetic interpreters for many years. We have been sensitized to the fact that the skill of the interpreter and the health professional's skill in using the interpreter will make a great deal of difference in how the patient accepts the non-directive information intellectually and emotionally. Frequently, patients make crucial decisions based on this information. Our goal is to optimize the quality of communication, in a practical manner, in a health service practice.

The first consideration is to recognize the difference between translation and interpretation. In translation, each word is transcribed into the other language. Interpretation requires knowledge of the ideas behind the words and an understanding of the culture of the persons involved (both the patient's and the health professional's frame of reference). The ideal situation is to use a trained interpreter, who has fluency in both languages, is knowledgeable of the participants' cultures, has understanding of the medical terminology and the ability to work with the health professional in presenting the information with consideration of the patient's knowledge base and emotional state.

The following are some recommendations that are obvious but at times difficult to follow in a busy work environment.

Recommendations and Considerations in Selecting an Interpreter

If the patient is supplying his or her own interpreter:

• When you are preparing the patient for a genetic service referral or when you are initiating the first discussion of genetic information, clarify that genetic information is complex and the subject matter can be very personal. Often patients think they can "make do" with their limited knowledge of English or use a relative or friend as a translator. You may need to give an example of what is intimate information, i.e., pregnancy history, paternity secrets, a diagnosis that can have an effect on other family members. A child is particularly not a good choice as an interpreter!

• The patient may be limited in whom they can ask to assist them as an interpreter. If they have friends or family, many are working and must take off from work to help. The person who is able to come along may not be truly supportive or may be rushed for time.

• A friend or family member can be a source of support for a patient in addition to providing interpreting assistance. On the other hand, due to the relationship to the patient this individual may be biased in their translation and attempt to "protect the patient", thereby distorting what is being said. The health provider can try to prevent misinformations on the part of the interpreter/friend by addressing the fact that a particular communication is emotionally charged and that it is the patient's right to get complete information. The health professional may take the responsibility of the "bad news" off the interpreter by speaking directly to the patient and asking the interpreter to interpret "word for word", in particularly difficult parts of the session.

• Besides confidentiality issues and emotional preparedness, there are other factors such as intellectual capability, language skills of an individual that make the patient's choice of an interpreter very subjective. For these reasons, the reliability of an interpreter brought by a patient is not optimal.

If the health facility is providing the interpreter:

• Attempt to use an interpreter who has had previous experience interpreting genetic information. It is helpful if they have knowledge of genetic concepts, but beware that health professionals have a difficult time explaining genetics in lay terminology and that the facts may have changed since they received their training. It is best to utilize an individual who will carefully pass your message to the patient.

• At times bilingual staff are very willing to help, but may be busy with other responsibilities that will affect their availability. It is important that this responsibility is recognized and that proper arrangements are made beforehand. Any time restrictions should be known so that the communication process is not short changed.

• Confidentiality should be considered when the interpreter is from the patient's community. The interpreter may know the patient directly or indirectly. Even if that is not the case, confidentiality must be directly addressed at the start of the session.

• The health provider and the interpreter should meet beforehand if difficult information must be communicated. Genetic concepts, testing information or abnormal results should be understood.

• An interpreter's limits should be known, either in regards to their knowledge base or to what they can emotionally communicate to patients. Health facility personnel may not have had to deal with birth defects, reproductive decision-making, fetal demise, etc., in their work.

Communication Using an Interpreter

• Before the session, discuss the importance of open-mindedness with the interpreter. They must be open regarding the information provided both from the patient and medical personnel. Neither the interpreter nor the health professionals are in the role of judge or decision-maker for the patient.

• Before meeting with the patient, alert the interpreter to use their judgement in communicating information regarding factors that may influence the outcome of the interaction. The interpreter may become aware of nonverbal signs that are significant and these must be transmitted in a discrete way to the health professional. Example: the patient cannot read in his/her own language, a family member is providing undue influence, the patient is not being truthful, etc.

• Keep the explanations brief and avoid long sentences. Allow extra time for an explanation in another language. Speak directly to the patient and make appropriate eye contact, even though you are actually speaking to the interpreter.

• If a relative or friend is present, determine if the patient is inhibited by their presence. You may have to tactfully exclude this person.

• Get a sense of the patient's educational level. Gear the information to that level.

• Ask the interpreter to share with you if the patient has a strong belief, influence or particular emotional state. This includes lack of trust in the medical profession or the institution. As mentioned previously, if the patient is very anxious, he or she may not understand or "hear" what is being said.

• Put the interpreter at ease if he or she does not know the meaning of a term. Encourage clarification of concepts. If the interpreter is stuck on a word, find an alternate method of explaining it. Let the interpreter know that it is appropriate to interrupt you if an explanation is too long, difficult to understand, or if a pause is needed.

• After the interaction, if the patient makes contact with the interpreter, ask them to let you know. This patient may need additional services. Additional counseling may be needed if the patient did not understand or retain what was discussed.

Interpreter Assistance Regarding Genetic Services

We at UMDNJ-Genetic Center Outreach Program are available to you for materials in different languages and a genetic glossary in English and Spanish. Do not hesitate to call us if you have a communication problem. A phone call or a resource referral may help. Outreach telephone: 973 972-3302, FAX 973 972-3310.

Genetic Service Resource Bibliography for Spanish Language Interpreters

Guízar-Vazquez, J., Genética Clínica . Segunda Edición. Santafé de Bogota, México: Editorial El Manual Moderno S.A. de C.V., 1994. Publisher's address: Av. Sonora 206, Col. Hipódromo, Deleg. Cuauhtémoc, 06100 México, D.F.

Lara, R. R., Nuevo Diccionario Médico . Barcelona, Spain: Editorial Teide, 1984.

Libraire Larousse, The American Heritage Spanish Dictionary . Boston: Houghton Miffin Company, 1986.

Rodriguez, G., et. al, Genetic Counseling Glossary . Third Edition. Newark: New Jersey Medical School, 1997.

Stedman's Diccionario Médico: 25th Edition . Baltimore: Williams & Wilkins, 1993