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.

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, Maryland2 Department of Public Health, College of Health Professions, Temple University, Philadelphia, Pennsylvania

3 Center for Asian Health, Temple University, Philadelphia, Pennsylvania4 Cancer Prevention and Control, Fox Chase Cancer Center, Philadelphia, Pennsylvania

• Quality of life affected by breast canceroSerious physical side effects, such as severe physical pain, fatigue, menopausal symptoms, etc. oDepression was very common & most severe around the cancer diagnosis.oAnxiety might be severe after diagnosis, during treatment and after treatment.oCancer stress was mixed with other stressors in life, e.g., being a single mom.oMost participants had limited coping strategies for negative feelings.oA few quit their jobs because of cancer and some experienced a great deal of stress from job.

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)

Results •Participant characteristics:on=9 (4 Chinese BCS & 5 Korean BCS)oParticipants were between 40-69 years of age. Majority were married (78%)

and had college or above education (77%). oMost of them have completed active cancer treatment (89%). More than

half were diagnosed with breast cancer within a year (56%).

Quality of life in various stages

Culturally tailored questions

Social support

•How did having surgery/chemo/radiation therapy affect your physical/mental health/ family life/work? How did you cope with that?•Did you receive any support? •Was there anything that helped you through the process?

•How does living in the US (versus being in China/Korea) affected your experience of having cancer in the following areas?

•Coping with cancer•Emotionally •Spirituality •Social support•Family/spouse relationship •Caring for cancer•Alternative therapy

•Did you receive support from anyone in your life during and after treatments? •From whom? •How did they help you?•Did you feel satisfied with the support you received?•How did you tell your family about your feelings? How did they react?

Key Interview Questions

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.

Introduction

o 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)o There has been a rapid and steady increase of breast cancer incidence in CKW since 1980’s. (Gormez et al., 2010) o 81% of breast cancer patients survive more than ten years, for whom quality of life issues are of particular importance. (SEER, 2010) oLimited data exist for quality of life among Asian American breast cancer survivors.

Methods

•Study Design oNine face-to-face in-depth interviews with 4 Chinese and 5 Korean breast cancer patients and survivors.

•Participant Recruitment oA convenience sample of CKA BCS living in Washington D.C. metropolitan area.oRecruited from community based organizations, flyers on websites well known among Korean/Chinese immigrants, and personal contacts.oRecruited a diverse sample in terms of survivorship, treatment status, age, and level of education.

•Data collection and analysisoA comprehensive interview guide was developed based on literature review and input from experts on breast cancer survivorship and oncologists.oInterviews were recorded, transcribed, and translated.oTranscripts were analyzed by two independent coders and their analysis was compared and contrasted, and finally agreed upon in the research team.

•Loneliness and lack of cultural resourcesoDealing with cancer alone in U.S. often contributes to loneliness for some patients.oLack of cultural resources (e.g., culturally relevant information, Asian support group/counseling programs) was frequently mentioned by participants.

•Body imageoChanges in body image caused severe emotional pains especially among younger women. oVery few had an open discussion over issues of body change with their husbands.oThe relationship with spouse was greatly affected for some women and one was divorced because of it.

•Social SupportoFamily was the major source of support. oHowever, the support from family was mostly instrumental. oVery few participants had openly discussed their feelings or emotions with their family members because of concerns of burdening others.

•Cultural beliefs in canceroStress, guilt and destiny was thought to be the underlying cause of cancer.oFear of cancer may also come from the negative response from people around the patient. oSome of them hid the fact that they had cancer from others in fear of receiving more stress from negative responses.

“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)

“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)

“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)

“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)

“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)

“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)