Development and pilot evaluation of novel genetic educational materials designed for an underserved patient population.
ABSTRACT Genetic counseling for BRCA1 and BRCA2 mutations involves teaching about hereditary cancer, genetics and risk, subjects that are difficult to grasp and are routinely misunderstood. Supported by a grant from the Avon Foundation, the UCSF Cancer Risk Program started the first genetic testing and counseling service for a population of traditionally underserved women of varied ethnic and social backgrounds at the San Francisco General Hospital (SFGH). Informed by educational theory and clinical experience, we devised and piloted two simplified explanations of heredity and genetic risk, with the aim of uncovering how to best communicate genetics and risk to this underserved population. A "conventional" version comprised pictures of genes, pedigrees, and quantitative representations of risk. A "colloquial" pictorial version used an analogy of the "information book" of genes, family stories and vignettes, and visual representations of risk, without using scientific words such as genes or chromosomes. A verbal narrative accompanied each picture. We presented these modules to four focus groups of five to eight women recruited from the SFGH Family Practice Clinic. Overall, women preferred a picture-based approach and commented that additional text would have been distracting. The majority of women preferred the colloquial version because it was easier to understand and better conveyed a sense of comfort and hope. We conclude that simplicity, analogies, and familiarity support comprehension while vignettes, family stories, and photos of real people provide comfort and hope. These elements may promote understanding of complex scientific topics in healthcare, particularly when communicating with patients who come from disadvantaged backgrounds.
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- "One example is the Cancer Risk Education Intervention Tool ('CREdIT'), a genetic education programme designed for the low literacy and multi-ethnic patient population at the Social Hospital. 26 CREdIT uses jargon-free language and non-scientific images to simplify genetics (Lubitz et al, 2007). Structured around a first person story narrated by 'Theresa,' a Latina with a strong family history of early onset breast cancer, CREdIT personalises basic information about hereditary cancer and genetic counselling; genes, inheritance and probabilities for inheriting cancer; and risk management and risk reduction options. "
ABSTRACT: This article presents two case studies in the development of BRCA genetic medicine in relation to specific ‘populations’ in the United Kingdom and United States, juxtaposing an ‘over researched Ashkenazi Jewish population’ in the United Kingdom and ‘medically underserved populations’ in the United States. Each case explores the research and clinical practices, as well as social, cultural and biological histories, through which population and genetics are co-produced (Jasanoff, 2004). In the first case study, ethnographic and qualitative data in the United Kingdom highlight the ways in which genetic medicine, research and disease can become intertwined with specific aspects of Jewish culture and history, and the effect this has on how this population responds to, and takes up, genetic testing and screening programmes. The second case study describes the intersection of genetic medicine in the form of BRCA clinical practices for ‘medically underserved populations’ with the discourses and practices of health disparities in the United States, and discusses the effects of this intersection on practices of BRCA genetic medicine and research. The juxtaposition of the two cases sheds new light on some of the specific cultural and biological practices that produce and define populations in local contexts, highlighting the contrasting ways in which BRCA genetic medicine is developing in relation to population.BioSocieties 12/2010; 5(4). DOI:10.1057/biosoc.2010.27 · 1.26 Impact Factor
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- "Since 2002, 625 women have participated in genetic counseling at SFGH, and 156 women have been BRCA tested. Formative research conducted for the design of CREdIT utilized focus groups to assess women's preferences for " conventional " versus " colloquial " presentation of risk information (Lubitz et al. 2007). The " conventional " version utilized pictures of genes, pedigrees, and quantitative representations of risk while the " colloquial " version used an analogy of the " information book " of genes, family stories and vignettes, and visual representations of risk, without scientific words. "
ABSTRACT: The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate participants' experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic counseling and testing for breast/ovarian cancer was a new concept; (2) CREdIT's story format was particularly appealing; (3) changes in participants' perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session counselor questionnaire, counselors' rating of the patient's preparedness before the session was significantly higher for patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT to specific populations reflect important areas for future work.Journal of Genetic Counseling 10/2010; 19(5):447-62. DOI:10.1007/s10897-010-9303-3 · 1.75 Impact Factor
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ABSTRACT: Low levels of awareness about hereditary breast cancer and ovarian cancer and underutilization of genetic services combined with the high incidence of early onset breast cancer in the black community underscore the urgent need to provide information about hereditary breast and ovarian cancer to black women. The primary goal of the present study was to develop a culturally targeted brochure designed to increase awareness about inherited breast cancer among black women using the principles of Learner Verification. Three focus groups were conducted with black women, including those with or without a history of breast cancer (n = 46), to evaluate the brochure. Data were analyzed through hand coding using a simple classification system placing participants' responses in the predetermined Learner Verification categories. On the basis of the feedback obtained, the brochure has been modified to improve cultural-targeting, relevance, and clarity and has been made available for dissemination. Our study illustrates the importance of obtaining feedback from the target audience when developing a culturally targeted informational brochure for black women. Further, the complexity of our subject matter (i.e., inherited breast and ovarian cancer) underscores the importance of using inviting visuals and personal vignettes, while maintaining a simple and clear message.Genetic Testing and Molecular Biomarkers 01/2011; 15(1-2):59-67. DOI:10.1089/gtmb.2010.0102 · 1.15 Impact Factor