title: Developing culturally sensitive cancer genetics communication aids for African Americans.
abstract: The goal of this project was to develop educational materials to communicate genetic health information in a culturally sensitive manner. These materials were designed to communicate information about cancer risk, genetic testing options, and health management options in an African American kindred with a known BRCA1 mutation. Educational materials were pilot-tested in four African American focus groups varying in socioeconomic status and gender. The audiotaped focus groups consisted of presentation of the educational materials, followed by a feedback session led by an African American facilitator. Qualitative analysis of the focus group transcripts identified important themes and the educational materials were revised in response to the participants' suggestions. The products included a booklet and a flip chart for use in educational sessions. Focus group participants recommended a substantial reduction in technical detail, and recommended that information be personalized and made relevant to the lives of the target population. Other critical themes included the importance of building trust in the medical system and avoiding words and images that have strong negative associations in the African American community. Strategies that were successful included nontechnical images to explain genetic concepts, clip art images to energize and personalize word slides, vibrant color, identifiably African American figures, and the development of themes relevant to many African Americans. The use of these materials in an ongoing study offering BRCA1 counseling and testing to a large, rural Louisiana-based kindred will provide additional feedback about the effectiveness of the culturally tailored genetic education and counseling materials.
authors.affiliation: University of Utah Health Sciences Center, College of Medicine, Salt Lake City, Utah 84132, USA. bonnie.baty@hsc.utah.edu
authors.forename: Bonnie Jeanne
authors.initials: BJ
authors.lastname: Baty
authors.forename: Anita Yeomans
authors.initials: AY
authors.lastname: Kinney
authors.forename: Sara Marie
authors.initials: SM
authors.lastname: Ellis
mesh_terms: D000328:Adult; D001741:Black or African American / Q000193:education / Q000523:psychology; D000368:Aged; D019313:BRCA1 Protein / Q000235:genetics; D044383:Black People / Q000235:genetics*; D001943:Breast Neoplasms / Q000175:diagnosis / Q000235:genetics / Q000517:prevention & control; D016504:Breast Self-Examination / Q000379:methods; D002886:Chromosomes, Human, Pair 17 / Q000235:genetics; D005260:Female; D005820:Genetic Testing / Q000379:methods / Q000523:psychology; D006293:Health Promotion / Q000379:methods; D006801:Humans; D008297:Male; D008327:Mammography; D008875:Middle Aged; D009369:Neoplasms / Q000175:diagnosis / Q000235:genetics* / Q000517:prevention & control; D010353:Patient Education as Topic / Q000379:methods*; D012307:Risk Factors; D012944:Social Support
chemical_list: D019313:BRCA1 Protein