Implications and Next Steps

1. Challenges and Needs of Chinese and Korean American Breast Cancer Survivors: In-Depth Interviews Sunmin Lee,1 Grace X. Ma,2,3 Carolyn Y. Fang2,3,4 Lu Chen, 1 Youngsuk Oh,1 Lynn Scully1 1 Department of Epidemiology and Biostatistics, University of Maryland School of Public Health, College Park, Maryland 2 Department of Public Health, College of Health Professions, Temple University, Philadelphia, Pennsylvania 3 Center for Asian Health, Temple University, Philadelphia, Pennsylvania 4 Cancer Prevention and Control, Fox Chase Cancer Center, Philadelphia, Pennsylvania • Loneliness and lack of cultural resources • Dealing with cancer alone in U.S. often contributes to loneliness for some patients. • Lack of cultural resources (e.g., culturally relevant information, Asian support group/counseling programs) was frequently mentioned by participants. • Body image • Changes in body image caused severe emotional pains especially among younger women. • Very few had an open discussion over issues of body change with their husbands. • The relationship with spouse was greatly affected for some women and one was divorced because of it. • Social Support • Family was the major source of support. • However, the support from family was mostly instrumental. • Very few participants had openly discussed their feelings or emotions with their family members because of concerns of burdening others. • Cultural beliefs in cancer • Stress, guilt and destiny was thought to be the underlying cause of cancer. • Fear of cancer may also come from the negative response from people around the patient. • Some of them hid the fact that they had cancer from others in fear of receiving more stress from negative responses. Key Interview Questions • Introduction • Breast cancer is the leading cancer in incidence and among top five in mortality in Chinese & Korean women (CKW) in the U.S. (Miller et al., 2008) • There has been a rapid and steady increase of breast cancer incidence in CKW since 1980’s. (Gormez et al., 2010) • 81% of breast cancer patients survive more than ten years, for whom quality of life issues are of particular importance. (SEER, 2010) • Limited data exist for quality of life among Asian American breast cancer survivors. “If there had been one (support group for Chinese Americans), I would have been willing to join and I wished I could help others by sharing my experience with them.” (A 50-year old Chinese woman) Objective To identify challenges and needs of Chinese- and Korean American breast cancer survivors (CKA BCS) in order to inform the development of a culturally relevant intervention. • Results • Participant characteristics: • n=9 (4 Chinese BCS & 5 Korean BCS) • Participants were between 40-69 years of age. Majority were married (78%) and had college or above education (77%). • Most of them have completed active cancer treatment (89%). More than half were diagnosed with breast cancer within a year (56%). • Methods • Study Design • Nine face-to-face in-depth interviews with 4 Chinese and 5 Korean breast cancer patients and survivors. • Participant Recruitment • A convenience sample of CKA BCS living in Washington D.C. metropolitan area. • Recruited from community based organizations, flyers on websites well known among Korean/Chinese immigrants, and personal contacts. • Recruited a diverse sample in terms of survivorship, treatment status, age, and level of education. • Data collection and analysis • A comprehensive interview guide was developed based on literature review and input from experts on breast cancer survivorship and oncologists. • Interviews were recorded, transcribed, and translated. • Transcripts were analyzed by two independent coders and their analysis was compared and contrasted, and finally agreed upon in the research team. “Everyday when my children called, they asked “Mom, did you have a good sleep?”I just replied ‘Good.’ What else can you say? Right? Telling them too much will stress them.” (A 66-year old Chinese woman) “When I talked with Koreans, they were very negative about my situation. What they asked first was how much longer I could live.” (A 46-year old Korean woman) • Quality of life affected by breast cancer • Serious physical side effects, such as severe physical pain, fatigue, menopausal symptoms, etc. • Depression was very common & most severe around the cancer diagnosis. • Anxiety might be severe after diagnosis, during treatment and after treatment. • Cancer stress was mixed with other stressors in life, e.g., being a single mom. • Most participants had limited coping strategies for negative feelings. • A few quit their jobs because of cancer and some experienced a great deal of stress from job. • Implications and Next Steps • A linguistically and culturally appropriate intervention should provide information, teach skills to cope with problems and manage stress and increase self-efficacy in the context of cultural background. It will also create a support group with women from the same ethnic group. • We plan to design and implement a theory-based, culturally and linguistically appropriate intervention to increase quality of life in Korean breast cancer survivors. Acknowledgements: This research is a pilot project supported by NIH-NCI’s Community Network Program Center, ACCHDC U54 CNPC (1U54CA 153513-01, PI: Grace Ma)