Developing culturally sensitive cancer genetics communication aids for African Americans

Bonnie Jeanne Baty, Anita Yeomans Kinney, Sara Marie Ellis

Research output: Contribution to journalArticlepeer-review

59 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)146-155
Number of pages10
JournalAmerican Journal of Medical Genetics
Volume118 A
Issue number2
DOIs
StatePublished - Apr 15 2003
Externally publishedYes

All Science Journal Classification (ASJC) codes

  • Genetics
  • Genetics(clinical)

Keywords

  • African American health
  • Cancer genetics
  • Cultural sensitivity
  • Education
  • Focus groups
  • Genetic counseling
  • Risk communication

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