Development of a Culturally Tailored Genetic Counseling Booklet About Hereditary Breast and Ovarian Cancer for Black Women

被引:19
|
作者
Permuth-Wey, Jennifer [1 ,2 ]
Vadaparampil, Susan [3 ,4 ]
Rumphs, Alnecia [5 ]
Kinney, Anita Yeomans [6 ]
Pal, Tuya [4 ,7 ]
机构
[1] H Lee Moffitt Canc Ctr & Res Inst, Dept Epidemiol & Genet, Tampa, FL USA
[2] Univ S Florida, Coll Publ Hlth, Dept Epidemiol & Biostat, Tampa, FL USA
[3] H Lee Moffitt Canc Ctr & Res Inst, Hlth Outcomes & Behav Program, Tampa, FL USA
[4] Univ S Florida, Coll Med, Dept Oncol Sci, Tampa, FL USA
[5] Univ Florida, Coll Publ Hlth, Dept Epidemiol, Gainesville, FL USA
[6] Huntsman Canc Inst, Salt Lake City, UT USA
[7] H Lee Moffitt Canc Ctr & Res Inst, Risk Assessment Detect & Intervent Program, Tampa, FL USA
关键词
genetic counseling; educational materials; African American; BRCA1/2; mutations; cultural sensitivity; AFRICAN-AMERICAN WOMEN; RACIAL-DIFFERENCES; BRCA2; MUTATIONS; ATTITUDES; COMMUNICATION; INFORMATION; SENSITIVITY; PREVALENCE; PREDICTORS; KNOWLEDGE;
D O I
10.1002/ajmg.a.33187
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
Printed educational materials (PEM) can serve as important tools to enhance and reinforce information presented during genetic counseling (GC) for BRCA1/2 testing, yet few such materials have been specifically developed for the Black community. The goal of the current study was to develop a BRCA1/2 genetic education booklet for Black women at increased risk for hereditary breast and ovarian cancer (HBOC). Investigators identified available PEM about BRCA1/2 targeted toward Blacks. To obtain possible perspectives of the target population regarding modified and newly developed materials, a Community Advisory Panel (CAP) comprising breast cancer survivors, advocates, and community leaders was convened. While the CAP felt PEM were an important adjunct to GC, the panel recommended developing materials that were more personalized and relevant to Black women. A 12-page booklet that follows the flow of a standard GC session was developed; it includes a limited amount of technical information, incorporates familiar terms and images to describe key concepts, and contains vignettes and photographs of Black women. Upon review of the newly developed booklet, CAP members agreed their input had been well implemented, and only had minor suggestions. The booklet is currently being used in a population-based study of BRCA1/2 mutations among Black women diagnosed with early-onset breast cancer. Involving members of the target community is critical to the development of culturally tailored PEM. Further evaluation of the utility of our booklet in increasing awareness and understanding of HBOC and promoting informed decision-making regarding genetic testing and medical management among Black women is needed. (C) 2010 Wiley-Liss, Inc.
引用
收藏
页码:836 / 845
页数:10
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