Resources/Referral/Follow Up

Health Literacy

An important component of genetic counseling is assessing your patient’s general health literacy. Health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Healthy People 2010). Almost half of the population of the United State has inadequate health literacy (National Assessment of Adult Literacy, 2003), which can impact their ability to participate fully in the genetic counseling process and to give informed consent to participate in research studies.

There are a variety of well known factors that can influence health literacy. Influential factors include an individual’s level of general literacy, his/her level of experience with the health care system, the complexity of the information, cultural and linguistic factors, and how the information is communicated (Cornett, n.d.). Even for well educated individuals with high general literacy, navigating the nuances jargon in the medical system can be challenging. Meeting with a genetics professional may require an even higher level of medical understanding than most health care appointments, making assessing and improving the health literacy of our patients an important facet of the genetic counseling process.

Emotional factors can pose additional barriers to understanding when the patient might ordinarily be able to comprehend the words and concepts. When all factors are considered, the negative consequences of not being able to understand instructions regarding a chronic condition are well documented. Health literacy is the single best predictor of an individual’s health status, surpassing even age, income, employment status, education level or racial/ethnic group (Cornett, n.d.). Additionally, even though genetic counselors can do very little to change these other predictors of health status, it is the genetic counselor’s explicit role to interpret and communicate complex health information in a manner that can be understood and used by the patient. Throughout the genetic counseling session, there are many ways that the genetic counselor can aim to improve the health literacy of their patients.

During the appointment, the genetic counselor should assess the patient’s health literacy. This can begin during the introductory exchanges with the patient through social history assessment. This assessment continues during the family history section of the appointment, especially if the history screens positive for learning or developmental differences in the family. During contracting, it is also important to elicit the patient’s beliefs regarding genetic principles and the journey through the medical system that led him/her to genetic counseling.

Once you have a sense of the patient’s level of health literacy, there are several tools that a genetic counselor can use while discussing genetics principles to ensure the discussion is at an appropriate level for this individual. Although genetic counseling appointments often incorporate a significant amount of jargon, it is important to use as much “plain language” as possible. Some tips for orally communicating complex health information to people of low health literacy include (adapted from Cornett, 2005):

  •  Slow down and frame the message first. o Consider what your patient told you when discussing his/her lay beliefs regarding genetics. Ground the explanation you provide in terms and ideas that are already familiar to this patient whenever possible.

  •  Limit, organize, and repeat 3-5 most important key points, teaching one step at a time.

    •  Think to yourself, what are the five most important points that my patient needs to take away from this appointment? How can I convey these five things in the clearest way possible?

  •  Use commonly understood words whenever possible.

    •  If you must use genetics jargon, be sure to present terms along with a commonly understood definition. It is especially useful to provide a visual aid of both the concept and the word along with the oral definition.

      • For example, when explaining chromosomes, an appropriate explanation may sound something like this: “This is a picture of our chromosomes. Chromosomes are the parts of our body that store our personal inherited (genetic) information in all of our cells. It may be useful to think of chromosomes like a filing cabinet: chromosomes make sure all of our genetic information is present, organized, and stored in the right place.” It is also useful to show a labeled picture of chromosomes, with the written word displayed near the picture.

  •  Limit the amount of information given at a time and break down complex information into short segments.

    •  Whenever possible, regularly break up your explanations with prompts to allow patients to ask questions. Individuals with low health literacy may have difficulty asking questions. Expressly prompting the patient by asking, “What questions do you have at this point?” can be helpful.

    • At important points in the session, such as after you present a key take-home message, ask your patient to recall and restate what you have said by incorporating teach-back. Teach-back reinforces learning, provides an opportunity for the counselor to assess the patient’s understanding, and breaks the session into more memorable short segments.

      • Teach-back should not make patients feel they are being put on the spot. One way of lessening the pressure is to ask patients how they would explain what we just discussed to a friend or family member who wasn’t able to come to the session. Another approach is to present the “teach-back moment” in the following manner: “We covered a lot of ground so far, and I want to make sure that I explained this information in a way that makes sense to you. If not, I can explain it in a different way. Can you tell me what you understood from my explanation?”

Activity:

Work with a colleague on this activity. Each person should choose one or more of the following counseling topics. Write down 3-5 “need to know” points for the topic before you begin counseling. Practice communicating the concepts to your partner, who has low health literacy.

  1. Describe genes and chromosomes.

  2. Describe a 13/14 balanced translocation.

  3. Describe dominant and recessive inheritance.

  4. Describe congenital adrenal hyperplasia.

  5. Describe BRCA1 testing.

  6. Describe Down syndrome.

Reflection:

De-brief with your colleague. Did you agree on “need to know” points? How did you modify your counseling? Evaluate the counseling role play from the perspective of the counselor and the client. What aspects of the counseling went really well? Which aspects of the counseling need improvement? How did the counseling experience feel?

 

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