Focus Group Evaluation of Customized Family Health History Education Materials in a North Carolina Community

Oct 15, 2026

Customized family health history (FHH) education booklets grounded in the “Does It Run In The Family?” program were created for community audiences and basic genetics learning needs. Three focus groups (19 participants) assessed usefulness for conveying health information at low reading levels. The analysis identified five recurring themes—appearance, organization, content, length, and reading comprehension. Participants found the materials attractive, well organized, and understandable, while expressing concerns about length and limited detail.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages10

Reading Time25 min

AccessFree to download

Abstract

Background

Health Literacy

Community Centered Family Health History (CCFHH) Project

Research Article Focus Group Evaluation of Customized Family Health History Education Materials in A North Carolina Community Karen Powell, Vaughn Edelson, James O’Leary, Carol Christianson, and Vincent Henrich ABSTRACT 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. Powell K, Edelson V, O’Leary J, Christianson C, Henrich V. Focus group evaluation of customized family health history education materials in a North Carolina. Am J Health Educ. 2011;42(3):161-170. This paper was submitted to the Journal on October 18, 2010, revised and accepted for publication on February 11, 2011. BACKGROUND 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 influ- ence the quality and usage of the resources.1 A critical component of the development process is the evaluation of the materials by potential users. Health Literacy 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 com- Karen Powell is a genetic counselor in the Center for Biotechnology, Genomics and Health Research (CBGHR), University of North Carolina at Greensboro (UNCG), Greensboro, NC 27402; E-mail: [klpowel2@uncg.edu. Vaughn Edelson](klpowel2@uncg.edu. Vaughn Edelson)[ ](klpowel2@uncg.edu. Vaughn Edelson)is a programs manager at Genetic Alliance, Washington, DC 20008. James O’Leary is chief innovation officer at Genetic Alliance, Washington, DC 20008. Carol Christianson is a genetic counselor in the CBGHR, UNCG, Greensboro, NC 27402. Vincent Henrich is a director in the CBGHR, UNCG, Greensboro, NC 27402. Karen Powell, Vaughn Edelson, James O’Leary, Carol Christianson, and Vincent Henrich plex information at a basic reading level. To facilitate he

FAQs

What were the customized materials designed to do?

The booklets provided family health history education and basic genetics information, tailored for local community use and readers with low reading levels.

How was the evaluation conducted?

Three focus groups with 19 participants reviewed the booklets using a semi-structured discussion guide, and transcripts were manually coded to identify themes.

What strengths and concerns did participants report?

Participants valued attractiveness, organization, usefulness, and overall understandability. They also raised concerns about booklet length and insufficient detailed information.

Oct 15, 2026

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