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.

Development of a Brochure for Increasing Awareness of Inherited Breast Cancer in Black Women

“…Our sample was recruited from the Tampa Bay area and may not be representative of blacks from other regions of the United States. However, there were similarities between key findings from our study and those conducted with other groups of black populations from other parts of the country (Baty et al, 2003;Thompson et al, 2004;Lubitz et al, 2007). Additionally, as with all qualitative research, these results may not be transferable to other populations.…”

“…As in previous studies, our team found that focus groups are an effective means of gathering information during the process of developing cancer genetic education materials for black populations (Baty et al, 2003;Thompson et al, 2004;Lubitz et al, 2007). Using this approach, guided by key principles of LV, our team was able to identify areas in need of improvement for the educational brochure.…”

“…Previous studies using focus groups to evaluate genetic education materials for minority populations have had limited diversity with respect to risk, cancer status, educational level, and age (Baty et al, 2003;Thompson et al, 2004;Lubitz et al, 2007). As with any study, however, the results should be considered in light of certain limitations.…”

“…To date, few materials have specifically been developed to improve awareness about hereditary breast cancer in black women. The most widely cited materials were developed with input from and use for a single high-risk black kindred from Louisiana (Baty et al, 2003).…”

Mindfulness-Based Symptom and Stress Management Apps for Adults With Chronic Lung Disease: Systematic Search in App Stores (Preprint)

“…Evidence suggest that ethnic minorities have distinct cultural beliefs that affect their beliefs about lung cancer, including how they engage in lung cancer care [36,37]. General cancer-related studies have also demonstrated a desire among ethnic minorities for culturally relevant health information [38,39]. However, many print and web-based education materials are not culturally sensitive [21][22].…”