Expert Commentary
Jacqueline Avila, MPH, MS, CGC
Genetic Disease Program Specialist III
Genetic Disease Screening Program
850 Marina Bay Parkway, F175,
Richmond, CA 94804
(510) 412-6205
(510) 412-1551
Email:
Jacqueline.Avila@cdph.ca.gov
Resources/Referral/Follow Up: Health Literacy in the Research Genetic Counseling Setting
Health literacy is an important detail that Genetic Counselors are constantly faced with whether it be in a clinical setting, research project or State-wide screening. As mentioned in this case scenario, health literacy as defined by Health People 2010 is: "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions". The four words bolded in this definition should be examined as they apply to a specific cultural group or individuals.
It is necessary to know the population before developing genetic information to the target population.
- Learn about a specific cultural group in terms of religious traditions and rituals, family structure, beliefs about illness or homeopathic cures and how these practices and beliefs have persisted or been adapted by first or second generation low-income immigrants who find themselves in a new cultural setting with perhaps the predominant language being different from their own. Also learning about their views on disease, cancer, and consanguineous unions will help you to develop material that does not challenge their views but can be incorporated into the context of the genetic literature or session
- Think about how daily needs (food, shelter, job, family or health) and stressors (communicating in a new language or functioning within a new culture which they may or may not want to adapt to or acculturate to) will affect how a specific cultural group or individuals process the genetic information being conveyed.
- Develop genetic literature by utilizing the learning assessment tools which help produce written literature or assist with oral explanation in the immigrant community’s native language. In this case scenario, the learning assessment tools mentioned are tools widely utilized by health education professionals. There are a few additional details about readability and appearance of graphics and page layout to keep in mind. It is important to find out the literacy level of people within the state or county of the population that is being targeted for the dissemination of genetic information. In California, the Offices of Family Planning, Smoking, and AIDS written material is at the 4-6 grade level for their at risk target population (teens). Also regarding readability, while the SMOG Readability Formula can be utilized, there is the Flesh-Kincaid Grade Level tool in Microsoft word which can provide an easy, quick calculation. The Flesh-Kincaid readability scale can be turned on by selecting the Tools bar, then going under Spelling and Grammar and selecting Options. Under Options, the checkbox “Show Readability Statistics” can be selected.
While readability is important, the graphics used are essential in developing written material and should be used to reinforce the written message. They should not appear just to grab the reader’s attention. Another key component of the written material is the layout of the written text. Left justification should be used because it helps the reader track the written word. Full justification should never be used. Another good resource is the 2nd edition of Teaching Patients with Low Literacy Skills by Cecilia Doak, Leonard Doak, and Jane Root. Although this book was published in 1996, its content is still relevant.
When developing written material or delivering information orally to a couple, remember every culture or every individual within a cultural community is not going to have the same health literacy. Designing literature is a mass undertaking and can be a complex challenge at times, but utilizing the information in this case scenario will assist in the development of genetic literature. Health literacy is specific to a person. The Genetic Counselor’s role is to provide information that each person of a couple can utilize which allows the individual or the couple to make a decision which is appropriate for him/her or them.
Jacqueline Avila is a board certified Genetic Counselor who graduated from the Colorado Health Sciences Center Genetic Counseling Program in 1995. For several years, she worked as a Genetic Counselor at several State-approved Prenatal Diagnosis Centers in California. For the past 11 years, she has worked for the Genetic Disease Screening Program in California with the major of these years spent with the California Prenatal Screening Follow-up Program.
