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

Abstract

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.