Transcript Challenges and Needs of Chinese and Korean American Breast

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
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.
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.
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 analysis
oA 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.
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)
Key Interview Questions
Quality of life in
various stages
•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?
Culturally tailored
questions
•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
Social support
•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?
Results
•Participant characteristics:
o n=9 (4 Chinese BCS & 5 Korean BCS)
o Participants were between 40-69 years of age. Majority were married
(78%) and had college or above education (77%).
o Most of them have completed active cancer treatment (89%). More than
half were diagnosed with breast cancer within a year (56%).
•Loneliness and lack of cultural resources
oDealing 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.
“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)
•Body image
oChanges 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 Support
oFamily 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.
“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 66year old Chinese woman)
•Cultural beliefs in cancer
oStress, 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)
• Quality of life affected by breast cancer
oSerious 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.
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.