Experiences of Korean-American Women with High Risk Hereditary Breast Cancer

PURPOSE: This micro-ethnographic study aimed to understand coping experiences of Korean-American (K-A) women after diagnosis with breast cancer due to a hereditary gene mutation. METHODS: Participatory observation and in-depth interviews were performed at one breast cancer screening center in Southern California, in 2005 with eleven first generation K-A immigrant women. All transcribed interviews and field notes were analyzed using ethnographic methodology. RESULTS: K-A women's experience varied based on acculturation risk factors including: limited English speaking ability; disrupted family relationships, individualistic family values, or intergenerational communication barriers; lack of Korean speaking nurses; and Korean physicians' who lacked knowledge about hereditary breast cancer risk. These risk factors led to isolation, loneliness, lack of emotional and social support. In comparison to Korean homeland women in a similar medical situation, these K-A immigrants felt disconnected from the healthcare system, family support and social resources which increased their struggling and impeded coping during their survivorship journey. These women were not able to access self-support groups, nor the valuable resources of nurse navigator programs. CONCLUSION: Professional oncology associations for nurses and physicians have a moral obligation to support and promote knowledge of hereditary cancer risk and self-help groups for non-native speaking immigrants.

Communication Patterns in Korean Families during BRCA Genetic Testing for Breast Cancer / 종양간호학회지

PURPOSE: The purpose of this micro-ethnography is to examine whether science and societal changes impact family communication patterns among a convenience sample of 16 Korean women. METHODS: The authors observed family communication in the context of a new breast cancer genetic screening and diagnostic testing program to detect BRCA gene mutations in Korean women at highest risk. RESULTS: Analysis of in-depth interviews and field notes taken during participant observation illustrated that communication patterns in families vary according to a woman's position in the family. If a grandmother tests positive for a gene mutation, her daughters make decisions on her behalf; they open and maintain the communication channel among family members. If a housewife is diagnosed with cancer and a genetic mutation, she immediately consults her husband and her sisters. The husband creates an open communication channel between his wife, his parents and his siblings. As a result, a woman's cancer is a concern for the whole family not merely a woman's secret or crisis. CONCLUSION: Cultural differences are important to consider when designing new genetic service programs in different countries.

Implementing and Evaluating a Nurse Led Hereditary Cancer Genetics Educational Program in a Korean Breast Cancer Surgery Clinic / 성인간호학회지

PURPOSE: This study was to develop and evaluate the clinical utility of the breast and ovarian cancer genetic counselling program specific for 20 Korean women(KBOCGP). METHODS: The KBOCGP was developed using three types of approaches: an ethnography among Korean women who underwent BRCA1/2 test, designing and implementing one week clinical genetic educational course for clinical cancer nurses, educational observation visits to three American cancer genetic counselling programs. And then pre-experimental design was implicated to evaluate the change of the women's knowledge about the hereditary breast and ovarian cancer and the level of the satisfaction with genetic counselling. RESULTS: The mean score of the knowledge has significantly increased from 7.45 +/- 3.86 to 11.55 +/- 2.21(t = 5.63, p < .001). The level of the satisfaction with the counselling was very high (27.47 +/- 1.35). Because most of the subjects have young kids, they showed strong concerns about their kids' getting cancer. CONCLUSION: This new KBOCGP is the satisfactory program for the education and communication of the genetic information to the Korean women with HBOC. But it is needed more to strengthen the cultural sensitivity especially to Korean family relationships. Authors recommend that this program be provided by other nurses who are counselling women at high risk of breast cancer.