Challenges and Needs of Chinese and Korean American Breast Cancer Survivors: In-Depth Interviews

Abstract

Breast cancer incidence and the number of breast cancer survivors have been rapidly increasing among Chinese and Korean women in the United States. However, few data are available regarding quality of life in Asian American breast cancer survivors. This qualitative study aims to describe Asian American women’s perceptions of quality of life and their breast cancer experiences. In-depth interviews with four Chinese and five Korean American breast cancer survivors and three oncologists were conducted in Chinese, Korean, or English. Interviews were recorded and transcripts were translated into English. Qualitative analyses were performed by two independent coders and then discussed and agreed upon by the research team. The respondents reported that the breast cancer experience had affected various domains of quality of life, but women reported having limited resources with which to cope effectively. Depression, anxiety, and stress were commonly reported, but women rarely discussed these issues with family and friends or sought professional help. As immigrants, women’s loneliness and a lack of social support and culturally relevant resources seemed to be major barriers to maintaining good quality of life. Women also expressed interest in learning more about alternative therapies and relaxation skills. These findings can be used to help inform the development of a culturally appropriate intervention for Asian American breast cancer survivors. Future programs may provide information in women’s native languages to teach skills to cope with stress and anxiety, increase women’s self-efficacy within the context of their cultural background, and enhance social support among women from the same ethnic group.

INTRODUCTION

Breast cancer is the leading cancer in incidence in Chinese (77.6 per 100,000 ) and Korean (53.5 per 100,000) women living in the United States (U.S.).¹ Though Asian Americans have been considered to be at lower risk for breast cancer, from 1988 to 2004, Asian American women experienced a more rapid increase in breast cancer incidence compared to non-Hispanic Whites, especially among U.S.-born Asian American women younger than 45 years old.²

With improvement in early detection and cancer treatment, 88.0% of breast cancer patients survive five years or more, and their quality of life issues are of particular importance.³ A qualitative approach, including focus groups, narrative studies, and interviews, has been used to investigate women’s experiences with breast cancer in diverse populations.^4–12 To the best of our knowledge, only four studies have examined quality of life issues among Asian American breast cancer patients. These studies identified cultural factors, such as spirituality and religion, familial support, cultural beliefs about cancer (e.g., stigma), communication patterns between couples, and participation in treatment, that influence quality of life in this population.^13–16

To further explore quality of life issues from both the patient and provider perspectives, in-depth interviews were conducted with Chinese and Korean American breast cancer survivors, as well as oncologists who provide care for Asian American breast cancer patients. Multiple aspects of quality of life, with a particular emphasis on cultural factors and coping with negative emotions, were extensively examined. Results from this exploratory study will contribute to the body of literature on quality of life among Asian American breast cancer survivors and inform the development of culturally appropriate interventions for Asian American breast cancer survivors.

METHODS

Study design

In-depth interviews were conducted by two trained interviewers who were bilingual in English and Chinese or Korean. After each interview, the research team reviewed the interview procedures and discussed the strengths and weaknesses of each interview to improve subsequent interviews.

Participants

The current study recruited a convenient sample of nine breast cancer survivors (four Chinese and five Korean Americans) and three oncologists who treat Asian American breast cancer patients. Survivors were recruited through community-based organizations located in the Washington, DC metropolitan area, using websites well-known to Korean or Chinese immigrants, and via referrals. The oncologists were recruited through referrals.

Data collection

Two separate interview guides were developed for survivors and oncologists by the research team in conjunction with input from experts on breast cancer survivorship (Table 1). These guides were based on reviews of existing literature on quality of life interventions for breast cancer patients. Individual interviews with each survivor lasted between two and three hours, while interviews with the oncologists were on average 30 minutes in length.

Table 1.

Core interview questions.

Survivors Interview	Oncologists Interview
Physical health, recurrence and work How did having surgery/chemo/radiation therapy affect your physical function or work? What serious side effects did you have? How did you cope with that? Do you worry about cancer recurrence (the cancer coming back)? How do you cope with these feelings?	What are the most pressing issues that women with breast cancer face (with treatment, side effects, coping, or emotional difficulties)? Are there any factors that are more of an issue for Asian women? From a physician’s perspective, what is your advice for women to cope with these difficulties?
Depression, Anxiety and Stress Have you experienced a time when you felt depressed/anxious/stressed? When? What helped you through this time? Did these feelings affect other areas of your life? (your work, your social life, your relationship with family or spouse?) How? Did you ever feel sad or depressed, angry, disappointed about your body after surgery? How did you cope with it?	How would you describe your Asian patients’ interaction with you compared with white patients in talking about fear and distress? Do many of your patients attend some sort of a support group for cancer survivors? Do you think that this helps them? In what way?
Talking about feelings How did you tell your family about your feelings? How did they react? How did you feel after talking with your family members? Did you ever talk to a doctor about the depression/anxiety/stress that you had?
Social support Did anyone give you support during and after treatments? Did you feel you wanted more support? In what way? How do you think support group of women in the similar situation might have helped?

Interviews were conducted with individual participants in the venues where they felt most comfortable (e.g., local library, their home). The study protocol was reviewed and approved by the institutional review board of the University of Maryland College Park. Informed consent was obtained from all participants prior to the interviews. With their permission, all interviews were tape-recorded.

Data analysis

All interviews were transcribed verbatim and then translated into English. Based on the interview guides, the research team created a codebook to guide the coding process, which consisted of definitions for broad categories (e.g., language barrier, cultural differences ) and subthemes under each category (e.g., subthemes under language barriers might include translation by family members or medical interpreter). With the codebook serving as a general framework, the coders were free to create any new categories or subthemes as necessary. Two independent coders qualitatively analyzed each transcript. The results were then contrasted and compared to assure accuracy and completeness using MAX QDA, a qualitative analysis software package.

RESULTS

Survivors’ Characteristics

Survivors were, on average, 50 years old. All but one participant was diagnosed with breast cancer within the past five years. The majority of survivors had early-stage breast cancer. Participants varied in education level, annual household income, and acculturation (see Table 2).

Table 2.

Survivors’ socio-demographic characteristics.

Characteristics	n (%)
Age at interview (yrs) (mean, SE)	53.7 (8.2)
Time since diagnosis (yrs) (mean, SE)*	1.9 (1.5)
Stage of Breast Cancer
1	2 (22.2%)
2	5 (55.6%)
3	1 (11.1%)
4	1 (11.1%)
Treatment Status
Ongoing	1 (11.1%)
Completed	8 (88.9%)
Highest Schooling Completed
High school or less	2 (22.2%)
Some college	0
College graduate or above	7 (77.8%)
Annual household income
<$20,000	1 (11.1%)
$20,000–49,999	2 (22.2%)
$50,000–74,999	0
$75,000–99,999	4 (44.4%)
>$100,000	2 (22.2%)
Employment Status
Employed	6 (66.7%)
Unemployed	1 (11.1%)
Retired	1 (11.1%)
Housewife	1 (11.1%)
Marital Status
Married	7 (77.8%)
Divorced	1 (11.1%)
Never been married	1 (11.1%)
Years lived in US (yrs) (mean, SE)	18.6 (10.5)
Speaking English
Not at all	1 (11.1%)
Not well	1 (11.1%)
Well	5 (55.6%)
Fluently	2 (22.2%)
Reading English
Not at all	1 (11.1%)
Not well	1 (11.1%)
Well	6 (66.7%)
Fluently	1 (11.1%)
Language spoken at home
English	3 (33.3%)
Korean/Chinese	5 (55.6%)
Both equally	1 (11.1%)
Perception of identity
Very Asian	5 (55.6%)
Mostly Asian	0
Bicultural	2 (22.2%)
Mostly Westernized	2 (22.2%)
Very Westernized	0
Yrs of school in US	2.1 (2.8)

^*One Korean patient who was diagnosed 21 years ago was excluded from calculating the average because all others were diagnosed within 5 years.

Oncologists’ Characteristics

Among the three oncologists interviewed, two were females. The oncologists were 46, 49, and 36 years old. One was born in Korea, one was born in India, and the other was born in the U.S. All were medical oncologists working in private practice and could speak at least one language other than English (e.g., Korean, Spanish, Tamil). On average, they had been practicing medicine for 19 years.

Physical health

Although the severity varied by the individual’s cancer stage and treatment type, almost all participants felt that their physical health had been greatly affected by breast cancer and all experienced side effects from treatment. Oncologists confirmed the impression that many of their Asian patients were afraid of the side effects of chemotherapy, especially hair loss, feeling sick, and being a burden to the family. According to accounts from the oncologists, some women even refused to receive chemotherapy because they did not want to look sick. Participants reported having limited methods and resources to cope effectively with physical suffering. Consequently, some participants expressed frustration and helplessness.

“I could do nothing to relieve the pain, but to tolerate it”. (A 50-year old Chinese woman talking about pain during chemotherapy)

Some participants were not aware of the long term side effects and wanted to have more support and resources to help them cope with the prolonged side effects from treatment.

“Patients tend to think everything will be over after chemotherapy, but it isn’t……There are lingering pains. I think it will be helpful to patients if family members and other people keep giving attention to patients even after having chemotherapy.”(A 44-year old Korean woman)

Depression, anxiety and stress

Breast cancer had a lasting impact on patients’ mental health as well. Depression was the most common emotional disturbance reported by survivors. Women felt hopeless and could not accept the fact that they had cancer.

“I cried every day and everywhere, at home and at work.” (A 61-year old Korean woman)

“When I woke up during the night (when she was first diagnosed) or during chemotherapy, sometimes thoughts suddenly came to me “Why it is me having cancer? Is it true?” (A 55-year old Chinese woman)

“I thought I was over. How come I had this disease?” (A 66-year old Chinese woman).

Anxiety was also common among participants and was often related to the uncertainty of cancer. Some women felt anxious at the cancer diagnosis worrying about “if it (cancer) was spread to other organs with serious conditions”, some were particularly anxious “the night before the session (of chemotherapy)”, some were anxious after the completion of all treatments because of the slow recovery.

Stress, coming from breast cancer combined with other stressors in life, was more of an issue for younger women. Jobs were a major source of stress for women who tried to keep working during or after treatments.

“I got so much stress from work.” (A 44-year old Korean woman)

Changes of body image, especially scars on the breast, were a big stressor for many participants. Some of them could not face the scars after surgery, and when they saw the scars and unsymmetrical breasts, they felt “scared”, “stressed”, “sad”, “disappointed” and “angry”.

“I was kind of angry at doctors. I thought like this was all you (doctors) can do... I was upset because they left this awful scar on me.” (A 44-year old Korean woman)

Furthermore, changes in body image affected the relationship with their spouse for some women, and most of them did not openly discuss this issue with their husband. Resulting tension in the relationship may also impose additional stress on some women.

“After having a mastectomy, my ex-husband didn’t sleep with me and didn’t touch me at all. I was humiliated and so sad. I thought he despised me because of my cancer and the surgery.” (A 61-year old Korean woman, diagnosed when she was 41).

The majority of participants reported very limited ability to cope with the depression, anxiety, or stress they experienced. One woman stated that the “depression was impossible to cope with” (A 50-year old Chinese woman). Watching TV, sleeping, praying, taking a walk, talking to others, and attending a counseling program in church were some of the measures taken by participants to cope. With the exception of church counseling, the coping methods they reported did not seem to work effectively in reducing anxiety, stress, or depression.

Only one Korean woman sought professional help, but the remainder never mentioned their distress to their physicians, either because they thought it was beyond their oncologists’ responsibility or they thought their doctors would not “take it seriously.” Oncologists also had this same sense stating that their Asian patients were not “vocal” or willing to talk about their fears.

“I’m sure the fear is the same, or even more because they don’t have as much family support in this country, but we don’t hear as much.”(A 36-year-old Korean American oncologist).

Work

Many participants experienced work difficulties after diagnosis. Among participants who were in the labor force (n=8), three quit their job after diagnosis because they thought working while dealing with cancer was “impossible” or “stressful”. One woman had to look for a new job immediately after treatment because she could not keep up with the high demands from her previous job. Another woman was frustrated that her supervisor perceived her to be incapable of completing her work as a result of having cancer.

“I couldn’t work well. The mean supervisor thought I was useless at my work. ” (A 61-year old Korean woman)

“I am getting stress from this job related issue. I am very busy with my job but I am not recovered yet.” (A 44-year old Korean woman)

Social support

Family, including adult children, was the main source of support for almost all participants, with spouses serving as the primary caregiver for married women. Caregivers did the household chores, accompanied the patient to the doctor’s office, and participated in the decision-making process. Women who were not married had limited support from family and thus faced more difficulties in dealing with their cancer.

As observed by oncologists, family members were highly involved in the medical care of Asian breast cancer patients. They accompanied patients to medical visits, took part in treatment decision making, and provided translation. However, the oncologists we interviewed were concerned that family members were not trained in medical interpretation and may not be accurate in conveying information. According to the oncologists, some patients may skip asking questions to shorten their visits, so that they would not burden the family member who accompanied them to the visit. Especially among older patients, concerns of becoming a burden to the family because of cancer and treatment side effects were quite common.

“Another big issue is older generations they feel that they are a burden to their family, so that’s another different issue that some of my patients do go through (compared to American patients).” (A 46-year-old Korean American oncologist)

“I only have one hope: don’t burden my son.” (A 66-year-old Chinese woman)

As immigrants, many participants stated that they had less social support than they would have if they had cancer in their home country where they could receive more help from family and friends. Even participants who had lived in the U.S. more than 15 years, still felt that they did not have very close friends around, and would be “embarrassed” to ask for help.

“It seems to be a culture here that it is awkward to ask others for help”. (A 50-year old Chinese woman)

“I have some church friends, but I wasn’t close to them. So I didn’t want to put burden on them or bother them.” (A 46-year-old Korean woman)

Talking about feelings

Open discussion of feelings and emotions was rare among our participants. The concern of burdening their family was one underlying reason for not disclosing feelings, especially negative emotions. For example, one 55-year old Chinese woman kept all her feelings to herself, including her pain, anxiety, and depression, because she thought her husband was already very busy and tired. Although she talked with her adult children every day on the phone, the 66-year old Chinese woman always told them “the bright side, not the dark side”. A few participants mentioned that they did not even want to disclose their illness to other family members or friends because they did not want “burden” others.

“Every day when they 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)

Oncologists also observed that their Asian patients were less open to talk about cancer. Patients had trouble confiding in even their closest friends about their diagnosis. Some oncologists thought that this reluctance to talk about cancer could hamper a woman’s ability to emotionally cope with her illness.

“They are not as vocal about all those issues than Americans……. Yes, cultural differences. They tend to be more inward and that probably affects their coping mechanisms.” (A 36-year-old Korean American oncologist)

Religion

Religion was found to be an important source of support for both Christians and Buddhists, especially among Korean women. Most of the women thought religion was second to family in helping them cope with negative emotions. For those who were Christians, reading the Bible, praying, and participating in Church activities were ways to cope with depression, anxiety, or stress. Support from church friends was also thought to be very helpful.

“I relied on it (religion) very much. I went to morning prayers and it helped me a lot. I would recommend it to rely on religion.” (A 46-year-old Korean woman)

“In my case, my church people really helped me a lot and prayed for me. I think I could overcome through that.” (A 44-year-old Korean woman)

Stigma associated with cancer

Stigma associated with cancer still exists among Asian American breast cancer survivors. A 55-year old Chinese survivor thought cancer was punishment for what she had done wrong.

“I was always thinking ‘Why, why it’s me!’ Sometimes I wondered whether it was because I did something really bad in my past life (note: past life as in a Buddhist’s saying). So I kept praying to god and wished he could forgive me.” (A 55-year old Chinese woman)

Another 62-year old Chinese woman thought having cancer was her “destiny” and she “cannot complain”.

Oncologists had similar impressions that some of their Asian patients were “ashamed” of cancer and hesitant to discuss it. A 66-year old Chinese woman believed that her Chinese friends/relatives would “fear when they hear cancer” and might respond in a negative way (e.g., acting as if the patient was going to die). To avoid additional stress from negative responses, she hid her disease from people other than her immediate family. This thought was shared by another 46-year old Korean woman who “did not meet up with Koreans for a year and half” because she was afraid to hear them asking “how much longer (you can live)?”

Need for a linguistically and culturally appropriate program

Survivors frequently mentioned the lack of cultural resources available to them. None of our participants attended a support group or counseling program, though some stated their willingness to attend if a linguistically compatible one existed.

“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)

Oncologists also mentioned that they were not aware of any support groups for Asian American survivors. Most support groups they knew about were conducted in English. They agreed that culturally, linguistically appropriate and disease-specific support groups are needed for Asian American breast cancer survivors. Support from women who have had similar experiences would be beneficial in reducing women’s fears, anxiety, and stress levels.

“I recommend them (support groups). But one problem is that there are not many Asian American support groups.” (A 46-year-old Korean American oncologist)

“If they don’t understand and follow English, they don’t really build a lot of very close friendships. It’s hard to build a friendship through an interpreter…… The support groups that I am aware of are all English support groups”. (A 49-year-old Indian American oncologist)

In addition to a support group, survivors also expressed a need for other cultural resources, such as information on nutrition and diet for breast cancer patients, as well as alternative medicine options. Some of them said they had to buy books from their home country or search online in their native language to have particular questions answered.

DISCUSSION

The current study is among the first to examine quality of life among Chinese and Korean American breast cancer survivors through a series of in-depth interviews with both survivors and oncologists. Results from the study highlight how the experience of breast cancer impacted Asian American women’s physical and mental health and their employment. In addition, these survivors expressed a number of unmet needs, especially in the domains of coping with emotional distress, communication, and social support.

Fear, anger, and depression have been identified in previous qualitative studies with breast cancer patients, as well as the current study.^{5, 17, 18} In coping with fear of mortality and recurrence, strategies such as positive thinking, focusing on one’s current life, and having a fighting attitude were reported among Caucasian women in Australia and Norway. ^{4, 17, 18} However, very few of our participants demonstrated a similar attitude towards fear. Pessimism was likely to be seen among some participants who thought dealing with negative feelings was impossible.

Asian American women in the current study seemed to have limited strategies for coping with emotional distress. Most just engaged themselves by doing things that would temporally distract them from their distress. Reluctance to disclose emotions to family and friends was likely to be seen among both Chinese and Korean Americans. The importance of spirituality and religion tended to stand out among our participants, as many of them stressed how prayers, church attendance, and support from church friends helped them through this experience. Spirituality has been identified as a critical aspect in minority women’s experiences with breast cancer, providing many women with the strength to cope with the disease.¹⁹

Furthermore, Asian American women seemed unaware of, or reluctant to seek, professional help to cope with their distress. Almost none of our participants mentioned their distress to oncologists because they thought it was beyond the oncologists’ responsibility. Also, very few of them had sought help from mental health specialists. Hence, efforts are needed to educate Asian American breast cancer survivors about the availability of such services and how to request them.^{12, 18} As has been reported by a previous focus group study, family is the major source of support for Asian American breast cancer survivors.¹⁴ However, the support our participants received was likely to be limited to instrumental aspects, such as help with household chores. Seeking emotional support from family members was often intentionally avoided because of the concern of “burdening” others. This is consistent with findings from a prior review that reported that Asian American women tend to seek practical support (e.g., financial assistance, translation or physical care) from family members, while women from other ethnic groups also received emotional support.¹⁹

However, this is not to say that emotional support from family members is of lesser importance to Asian American breast cancer survivors. Rather, it may reflect cultural differences in communication patterns and family relationships among Asian Americans. A qualitative study of breast cancer patients found that non-verbal communication with their husbands was valued by Japanese and Chinese American breast cancer patients in contrast to Euro-American women who valued direct and verbal communication with their husbands.¹³ Another qualitative study from Hong Kong also suggests that hiding strong emotions so that others would not be upset was a powerful social norm in Chinese culture.¹¹

Since receiving familial support was viewed as essential to good quality of life among Chinese American breast cancer patients,¹⁶ intervention programs designed to enhance quality of life among Asian American women should recognize the unique communication patterns that exist between women and their family members. This recognition could assist them with learning techniques and skills that may help them express their feelings and obtain needed emotional support from their families.

Participants were likely to be reluctant to elicit social support from people other than family members, e.g., friends, coworkers, support groups. Taking care of oneself independently is encouraged and valued in Asian culture and may contribute to the reluctance of asking for help.¹⁴ However, this self-reliance may also result from having less available social support as an immigrant. As all our participants were first-generation immigrants, they did not have many family members in the U.S. or close friends to whom they could turn for help without feeling embarrassed. Our participants expressed interest in attending a support group but they did not have access to groups that are linguistically compatible.

Finally, both Chinese and Korean American breast cancer survivors were concerned about receiving negative responses from their Asian friends, (e.g., indirectly implying death of the patient). Though other communication concerns (e.g., not willing to show weakness) have been commonly identified among breast cancer patients,^{17, 20} the negative responses Asian Americans patients received were likely to be unique due to the strong stigma of cancer as a terminal and even contagious disease.^{14, 15} The impact of negative responses was believed to be so devastating by our participants that one Chinese women did not disclose her diagnosis to people other than her direct family, and one Korean woman avoided her Korean friends for a long time. Similarly, this type of avoidance has been previously reported among Asian American breast cancer patients.¹⁴ Interestingly, a qualitative study in Norway with newly diagnosed breast cancer patients, shared similar concerns that pity and compassion from others would exacerbate patients’ fear and vulnerability.⁴

In summary, our results suggest that culturally appropriate intervention programs that enhance coping skills, communication with family and friends, and social support would be valued among Asian American breast cancer survivors. Psychological interventions for breast cancer patients have shown promising results with improvement of various quality of life domains, such as physical and mental functioning, pain management, immunity, social support, and survival.^21–27 However, most of these studies were limited to English-speaking populations, especially Caucasians. Interventions targeting Asian American breast cancer patients, especially for those who are first generation immigrants and have limited English ability, may incorporate cultural elements in the program design, provide information in a culturally and linguistically appropriate manner, and form a support group with women from a similar cultural background. Several interventions targeting quality of life aspects among Asian breast cancer patients in Hong Kong and Japan suggest that integrating Eastern cultural elements tailored to participants’ characteristics and cultural background can yield improvements in quality of life.^28–31 As a result, more studies are needed to develop and evaluate culturally tailored interventions to address the needs of Asian American breast cancer survivors and to enhance their quality of life.