Objective: Little is known about ways to effectively communicate information about genetic risk, issues related to genetic testing, cancer prevention and early detection to facilitate informed decision-making. Less is known about how to assure that cancer genetic communications are salient, relevant, and culturally sensitive to diverse audiences. The purpose of this study was to develop culturally sensitive communication aids for breast/ovarian cancer genetic education and counseling in African Americans.
Design: Descriptive
Population, Setting, Years: There were 36 participants in the 4 focus groups, all with self-identified African American ethnicity. Focus groups were divided into four categories: more educated women (n=13), less educated women (n=8), men (n=9), and members of a community advisory council (n=6). Three focus groups were conducted in Utah and one was conducted in Louisiana. Participants ranged in age from 22 years to 87 years. Seventy-five percent were female and 56% reported a family history of cancer. The focus group interviews were conducted during February and March of 2001.
Concept, Variables Studied: Culturally targeted cancer genetic communication strategies for African Americans
Methods: In this qualitative research study, culturally relevant educational materials were developed by an interdisciplinary team for use with a large African-American kindred with a known BRCA1 mutation. These materials were then evaluated for cultural relevance, understandability, and comprehensiveness through focus group interviews with African Americans of varying socioeconomic status and gender. Feedback from the focus groups was analyzed and used to revise and improve the materials. Each focus group discussion was audiotaped and transcribed verbatim. General themes were identified and data were analyzed using QSR-NUDIST software and categorized using these themes as guidelines. The educational materials were revised in response to the focus group participants’ suggestions and a culturally targeted cancer genetic communication booklet and genetic education flip chart were created.
Findings: Major themes that emerged through analysis of focus group interviews included the need for personalization of material for families with known BRCA1 mutations, the need for additional African American figures and icons in the materials, and the importance of discussing issues such as distrust of the medical community and the significance of family, community, social support, and religion/faith. Focus group participants also identified problems with the sequencing of information and an overabundance of technical detail. Another overriding theme was the importance of avoiding words and images that have strong negative associations in the African American community. Strategies that were successful included non-technical images to explain genetic concepts, clip art images to energize and personalize word slides, vibrant color, identifiably African American figures, and the development of health messages relevant to many African Americans.
Conclusions: Cancer genetic communication aids should be concise and should exclude non-essential information. Technical terms should be introduced and defined, and African American images and icons should be included throughout materials. Our data suggests that issues of religion, faith, community, and family should be included in educational materials to make presentations culturally relevant for African Americans. Distrust of the medical community should also be discussed.
Implications: Input from focus group participants increased our understanding of culture-specific conceptualizations about genetic counseling and testing and about the prevention and early detection of cancer. Much of what we learned can be applied to culturally targeted educational materials about a variety of health issues. In addition, many of the improvements derived from the focus groups are not specific to African Americans. The advice we received could be used to improve cancer communication with individuals of many different cultural and socioeconomic groups. With a better understanding of cultural beliefs and relevant and salient issues, we were better able to tailor the health messages in the education materials for the target audience. Upon completion of genetic education and counseling of individuals in an ongoing BRCA1 testing study in African Americans, we are evaluating the effectiveness of communicating risk and health information in terms of knowledge, satisfaction with the genetic counselor, including communication skills, and facilitation of risk-consistent health behaviors. In so doing, we can better design genetic education and counseling programs for African Americans and members of other diverse ethnic groups. The ultimate goal is to improve cancer and genetic communications that are designed to facilitate informed decision-making and healthy behaviors leading to reductions in cancer morbidity and mortality.
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