Focus Group Evaluation of Customized Family Health History Education Materials in a North Carolina Community
Powell, Karen, Edelson, Vaughn, O'Leary, James, Christianson, Carol, Henrich, Vincent, American Journal of Health Education
Background: The Does It Run In The Family? booklets provide educational materials about family health history (FHH) and basic genetics to readers of all levels and are customizable for local communities. Purpose: The booklets were customized and provided to focus groups to evaluate their usefulness in conveying health information at a low reading level. Methods: Three focus groups with 19 participants reviewed the booklets. A semi-structured focus group guide was used. Transcripts were analyzed manually and coded for themes. Results: Five themes emerged across all three focus groups: appearance, organization, content, length, and reading comprehension of the booklets. Many participants noted that the booklets were attractive, well organized, contained useful information and were understandable. Participants indicated that the customized materials were interesting. Concerns were expressed about the booklets' length and lack of detailed information. Discussion: The focus groups revealed that literacy level, personalization of educational materials, the use of relevant pictures to emphasize topics, phrasing of the title and sentences, and the organization of information are important factors to consider when producing effective community education materials. Translation to Health Education Practice: The booklets are distributed through local health organizations to assist community members when obtaining FHH.
Personalized medicine uses family health history (FHH) and genetic testing to improve patient health outcomes. This requires patients to gather family history information so that their risk for various diseases can be adequately assessed. The success of personalized medicine will therefore depend upon the development of effective health education materials about gathering such information.
The development of health educational materials is a complex endeavor involving considerations of target audience, reading level, design and other factors that influence the quality and usage of the resources. A critical component of the development process is the evaluation of the materials by potential users.
The Institute of Medicine defines health literacy 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." (2) The American Medical Association provides more specific language with its definition: "a constellation of skills, including the ability to perform basic reading and numerical tasks required to function in the health care environment." (3) Therefore, educational materials need to communicate complex information at a basic reading level.
To facilitate health literacy, health educators suggest that educational materials be written at a 6th-8th grade reading level. (4-6) However, creating materials at this grade level may not be enough, as some populations may still be unable to read materials written at this level. (7) Currently, ninety million adults in the United States have fair to poor literacy, suggesting that a significant portion of U.S. adults are unable to make informed health decisions (8) even before considering the possibility that even individuals with average literacy might have low health literacy. (2) Low health literacy is associated with a constellation of factors. These include: living in the South, low cognitive ability, being a member of certain racial/ethnic groups (African Americans, American Indians/Alaska Natives, and Hispanics), advanced age, incarceration and low socioeconomic status. (2,9)
FHH acts as the bridge between health and genetics. Collecting FHH is essential for the success of personalized medicine. It can also be used as a way to increase health literacy by encouraging patients to learn more about how their health and family history can affect their personal disease risk. …