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Running head: CHINESE BREAST CANCER SURVIVORS 1

Cancer Support Program for Chinese Immigrant Breast Cancer Survivors

Furjen Deng

Sam Houston State University

Ya–Wen (Melissa) Liang

Texas A&M University-Kingsville

Amanda La Guardia

University of Cincinnati

Helen Sun

Light and Salt Association

Author Note

Furjen Deng, Ph.D. is a Full Professor and Department Chair of Sociology at Sam

Houston State University.

Ya–Wen (Melissa) Liang, Ph.D. is an Assistant Professor at Department of Educational

Leadership and Counseling at Texas A&M University-Kingsville.

Amanda La Guardia, Ph. D. is an Assistant Professor and Counseling Program

Coordinator at University of Cincinnati.

Helen Sun, Ph. D. is the Executive Director at Light and Salt Association

This research was supported by grants from the Houston Affiliate of Susan G. Komen for

the Cure. Correspondence concerning this article should be address to Dr. Furjen Deng,

Department of Department of Sociology at Sam Houston State University, (Box 2446) CHSS

Building, 1901 Avenue I, Suite 270, Huntsville, Texas 77341. E–mail: [email protected], Phone:

(936) 294–1515; Fax: (936) 294–3573.

CHINESE BREAST CANCER SURVIVORS 2

Abstract

Breast cancer is the most common cancer among Asian American women. Chinese is the largest

Asian subgroup in United States. However, Chinese breast cancer survivors’ adjustment to

language barriers and access to intervention programs are rarely addressed in literature. This

study examined the influence of a culturally tailored cancer support program on quality of life

among Chinese immigrant breast cancer survivors. Results indicated that a cancer support

program tailored to the specific needs of an ethnic group helped cancer survivors embrace

positive attitudes and obtain tangible resources to enhance quality of life during cancer

progression.

Keywords: Chinese immigrants, breast cancer survivors, quality of life, support group


Cancer Support Program to Chinese Immigrant Breast Cancer Survivors

Breast cancer is the most common cancer among Asian American (AA) women (U.S.

Department of Health and Human Services, 2013). AAs are the fastest–growing ethnic group in

the United States (U.S.) with a growth rate of 60% among international migration (U.S. Census

Bureau, 2013). Researchers should consider ethnic and linguistic factors when evaluating

international populations’ access to resources. In 2011, 77% of AAs spoke a language other than

English at home and 47% of them spoke English “less than very well” (Ryan, 2013). According

to Butow et al., (2011), AA women endure immigration obstacles such as cultural and language

barriers, which hinder the quality of health care including understanding medical issues and

cancer prognoses.

Adjustment to Breast Cancer Diagnosis

Factors affecting a woman’s adjustment to a breast cancer diagnosis include cancer

staging, treatments, and support environment. The chronic and acute pain associated with breast

cancer and treatments often jeopardize patient employment, social activity, financial stability,

and quality of life (Blinder et al., 2012). Treatment would result in physical discomfort including

fatigue, nausea, vomiting, physical pain, lack of sexual desire, and memory loss. Approximately,

70% to 90% of cancer patients experience fatigue during and after treatments (Cantareo–

vllanueva et al., 2011; Samuels, Maimon, & Zisk–Rony, 2013; Tsai, Lin, Chao, & Lin, 2010;

Wang et al., 2012). When a breast cancer patient achieves remission from cancer, differing levels

of pain and nerve damage can negatively affect her ability to accomplish tasks in daily living

(Singh–Carlson, Wong, Martin, & Nguyen, 2013). A lack of sexual desire during hormonal

therapy somewhat results in patients’ guilty feelings regarding not being able to maintain a


healthy sexual relationships with their spouses and increases relational strain during and after

cancer treatments (Singh–Carlson et al., 2013).

Psychosocial factors including psychological distress, financial stress, insufficient

understanding of cancer prognosis, and a lack of social support affect patients’ adjustment

(Blinder et al., 2012; Butow et al., 2011; Lee–Lin, Menon, Nail, & Lutz, 2012; Singh–Carlson et

al., 2013; Tsai, Morisky, Kagawa–Singer, & Ashing–Giwa, 2011). Patients with breast cancer

disclosed that experiencing intrusive thoughts related to cancer diagnoses could lead to greater

distress especially with regard to seeking employment and securing a current job (Blinder et al.;

Fu, Xu, Liu, & Haber, 2008; Singh–Carlson et al., 2013). Researchers confirmed that family

support, spousal influences, supportive friendship, financial stability, employment, and faith play

crucial roles in helping patients with breast cancer adjust to daily life, social interactions, cultural

differences, language barriers, gender marginalization derived from cultural factors, and career

routines (Lim & Ashing–Giwa, 2013; Lim & Townsend, 2012; Singh–Carlson et al., 2013).

Chinese Immigrant Women with Breast Cancer

Most Chinese immigrated from China, Taiwan, and Hong Kong (Hoeffel, Rastogi, Kim

& Shahid, 2012). Researchers reported that most Chinese immigrant women lack knowledge and

awareness of breast cancer and its treatments (Fu et al., 2008; Lee–Lin et al., 2012; Tsai et al.,

2011). Immigrant patients often experience a high level of distress during cancer treatments

because a lack of English proficiency and tangible resources for understanding a cancer

diagnosis, and coping with treatments and psychological distress (Yi et al., 2011). Immigrant

patients disclosed a need for emotional support from their intimate partners, especially when a

lack of sexual desire was present, and these patients expressed feelings of relief when they

received emotional support from their spouses (Lee–Lin et al., 2012; Singh–Carlson et al., 2013;


Tsai et al., 2011). Fu et al. (2008) discovered that gaining family and social support would

effectively promote Chinese breast cancer survivors’ adjustment to new lifestyles during phases

of treatments and recovery.

Traditional cultural beliefs tend to result in Chinese immigrant women’s stigma, social

barriers, ashamed feelings, and a reluctance to disclose their cancer diagnoses and unwillingness

to communicate their physical distress with physicians (Lee–Lin et al., 2012; Papadopoulos, Guo,

Lees, & Ridge, 2007; Wang et al., 2012). Buddhism, Taoism, and Confucianism—common

Chinese living philosophies—influence Chinese people to pursue optimal harmony in personal

life (Tsai et al., 2011). Consequently, these beliefs result in Chinese breast cancer survivors

concealing their diagnoses for maintaining a semblance of harmony and avoiding questions from

others (Blinder et al., 2012). Furthermore, under influences of Buddhist beliefs regarding

“Karma”, some Chinese breast cancer survivors consider their cancer diagnosis as a punishment

from their previous life before birth. These traditional cultural and religious beliefs regarding

illness and life often hinder Chinese patients with breast cancer from effectively coping and

reaching out for social support and thus are often reflected in maladjustment during treatments

(Fu et al., 2008; Tsai et al., 2011).

Researchers investigated minority and immigrant breast cancer survivors’ adjustment to

their careers and quality of life (Blinder et al., 2012; Butow et al., 2011; Lee–Lin et al., 2012;

Lim & Ashing–Giwa, 2013; Singh–Carlson et al., 2013; Tsai et al., 2010; Wang et al., 2012; Yi

et al., 2011). Acculturation and racism appeared to impact immigrant women’s levels of stress

and hinder them from reaching out for social resources and support. Life stressors derived from

immigration aggravate these women’s challenges coping with cancer (Tsai et al., 2011).


Culturally Tailored Cancer Support Program

Breast cancer patients tend to feel depressed and anxious in the first year after a cancer

diagnosis and during the active phase of treatment (Reich, 2007). Stress and negative emotions

tend to worsen cancer symptoms among women (Lee–Lin et al., 2012). Individuals receiving a

high level of emotional support or tangible resources often experience a low level of depression

or anxiety when they confront destructive life events and facilitate resiliency. Individuals who

participate in community–based health programs could embrace learning opportunities for

coping and defeating depressive symptoms and incidents (Krasny & Roth, 2010). However,

researchers reported that different types of social support yield different results on the quality of

life and survival rates of breast cancer survivors. A few cohort studies focusing on support from

existing social networks, such as family and friends, claimed a positive correlation between the

quality of life and survival rates (Chou, Stewart, & Wild, Bloom, 2012; Epplein, Zheng, &

Zheng, 2011; Kroenke, Kubzansky, Schernhammer, Holmes, & Kawachi, 2006; Kroenke et al.,

2013; Weihs et al., 2005). However, several researchers argued that social support, such as

cancer support groups, did not affect the survival rate or survival benefit (Goodwin, Leszcz,

Ennis, 2001; Kissane, Love, Hatton, 2004; Spiegel, Butler, Giese–Davis, 2007).

A few researchers had investigated the influence of culturally and linguistically–

competent support programs for Asian immigrant women’s adjustments to life with breast cancer

(Banasik, Williams, Haberman, Blank, & Bendel, 2011; Lu et al., 2012). According to Wong and

Chan (2006), social support programs offered in hospital settings efficiently allow Chinese

patients to receive emotional support and feel comfortable sharing their treatment experiences.

These programs further provide Chinese patients coping skills addressing cancer symptoms and

side effects of treatments (Wong & Chan). Researchers noted that traditional cultural beliefs tend


to generate barriers and fears regarding receiving attention or judgments from others when

Chinese patients consider sharing their difficulties, personal experiences, and emotional

problems in a support group (Ashing, Padilla, Tejero, & Kagawa–Singer, 2003; Wang, Chien, &

Lee, 2012). Lacking English proficiency often contributes to Asian American patients’ perceived

powerlessness with regard to their illness and quality of life (Ashing et al., 2003; Yi, Swartz &

Reyes–Gibby, 2011). Therefore, a linguistically specific cancer support program tailored to a

particular ethnic group would create a comfortable atmosphere in which ethnic minority patients

are more readily able to disclose their concerns.

The purpose of this study was to assess influences of a culturally tailored cancer support

program on the quality of life of Chinese immigrant women with breast cancer. This study

identified what elements of programs produced the most beneficial effects and what factors—

such as demographics, cultural, linguistic, or medical practices—are crucial in predicting quality

of life among Chinese breast cancer survivors. The following research questions were

investigated:

(1) What are the treatment experiences of Chinese breast cancer patients?

(2) Does a culturally–specific breast cancer support group influence aspects of quality of life

on Chinese patients?

(3) What contextual factors predict quality of life for Chinese breast cancer patients?

Methods

The project was approved by the Board of Directors of the Light and Salt Association

(LSA). Participants were recruited through snowballing from the cancer support program

sponsored by the LSA.Snowballing allows researchers to reach participants who are difficult to

recruit (Gay et al., 2006). Data were collected at two points: at the entry of the program and nine


months following the completion of participation in the program. During the participation period,

each participant received a monthly newsletter, bilingual educational materials, and at least 10

units of one–on–one peer support services. All participants voluntarily attended at least one

monthly support group meeting or educational seminar. Based on needs of each participant,

some received patient navigation services, such as applying for Medicaid programs,

transportation, and linguistic assistance. The program was established in 2007 and data was

collected. A total of 63 breast cancer patients or survivors were recruited for this study from

2007 to 2013, and 51 of them completed both baseline and nine–month follow–up survey

questionnaires. Twelve participants with incomplete baseline or follow–up surveys were

excluded from the data analysis because of attrition or decease of life. Participants were given a

gift card of $15 after completing each survey as a token of appreciation.

The Support Program

The Houston Affiliate of Susan G. Komen for the Cure and Light and Salt Association

sponsored funding for this breast cancer support program to address the specific needs of

Chinese immigrant women diagnosed with breast cancer in the greater Houston area. The

program consisted of a variety of free services including monthly support group meetings,

educational seminars, one–on–one peer support through volunteering survivors’ visits or phone

calls, patient navigation and referrals, transportation and linguistic assistance, bilingual

educational materials, and monthly newsletters. All staff members and volunteers were required

to be fluent in a minimum of one Chinese or Taiwanese dialect and receive appropriate training

provided by relevant professional organizations, such as the American Cancer Society. Many

volunteers were breast cancer survivors who contributed their own experiences to help others

continue recovery.


Staff and volunteers devoted in incorporating cultural traditions and knowledge of the

East and West medicinal practices and beliefs to assist participants. The monthly support group

meeting was designed based on Chinese cultural norms and advice from medical professionals,

which differed from traditional structured support group meetings that focus on sharing and

discussion. Western trained or traditional Chinese medical professionals were invited as speakers

for monthly support group meetings and educational seminars. Eastern meditation or exercises

such as Tai Chi and Yoga were practiced during monthly meetings.

Instruments

Data were collected at the pre–test and again at the post–test. Questionnaires were

utilized at both tests and included following information: demographics, cancer diagnosis and

treatment history, experience with the cancer support program, and quality of life as measured by

Functional Assessment of Cancer Therapy–Breast (FACT–B). The post–treatment questionnaire

included an additional five questions related to treatment experiences: financial concerns,

difficulty in communicating with medical team or insurance companies, the participants

understanding of medical bills, and perceptions of care in relation to insurance requirements.

The FACT–B is a self–report instrument designed to measure multidimensional quality

of life (QoL) for patients with breast cancer (Cella, 2010). The FACT–B version 4 consists of

two major subscales, the FACT–General (27 items) measuring physical, social/family, emotional,

and functional well-beings and the Breast Cancer scale (10 items) measuring the above

mentioned well-beings and additional concerns. The FACT–B is available in 24 languages

including Chinese and validated with test–retest reliability, convergent validity, divergent

validity, and has demonstrated a high internal consistency (Cronbach’s alpha = .90) (Yoo, 2005).

The Cronbach’s alpha coefficients of FACT–G subscales range from .63 to .86 (Brady et al.,


1997). All items in the five subscales were assessed using a five-point Likert scale ranging from

not at all (coded 0) to very much (coded 4). A higher score of the sum of each subscale

represents a high level of well–being and quality of life.

Results

Participant Characteristics

Table 1 showed the demographic characteristics of 51 participants. Overall, the mean age

of participants was 54.5 years old and, the length of time participants had resided in the U.S. was

20 years. The vast majority were married (88%), had an undergraduate or higher college degree

(63%), were Christians (57%), and spoke Mandarin at home (75%). Compared to the national

data (median of age 61 years), participants for this study were diagnosed at younger age (median

age of 51 years; Susan G. Komen for the Cure, 2013). The average survival length for

participants at the time of study completion was 24.5 months. As to the cancer staging at the time

of first diagnosis, the majority of participants were stage I (25.5%), II (43.1%), and III (21.6%).

Less than 10% were diagnosed at either stages 0 or IV. Only 7.8% reported a recurrence of the

cancer. Concerning treatment, most had a mastectomy (70.6%), chemotherapy (78.4%), radiation

(60.8%), and/or hormonal therapy (66.6%). Among those who had mastectomy, less than 10% of

them chose breast reconstruction. Approximately 86.3% of the participants reported having

medical insurance, 64.6% of those had private insurance, and 28.3% had Medicare or Medicaid.

Table 1

Demographics (n=51)

Demographics Mean/Percent (SD)

Biological age (37–89 years) 54.5 (10.9)

Years living in US (1–44 years) 19.6 (12.0)

Married 88.2%


Single/Widowed/Seperated 11.8%

High School not Completed

High School Completed

College Education or Higher

7.9%

29.4%

62.8%

Buddhist

Christian

Non-Religious

Other

15.7%

56.9%

23.5%

3.9%

English Spoken at Home

Mandarin Spoken at Home

Cantonese Spoken at Home

Other Primary Language

3.9%

74.5%

17.6%

4.0%

Covered by Medical Insurance

Medicare or Medicaid

Private insurance

86.3%

28.3%

64.6%

Age at Initial Diagnosis 52.2 (10.5)

Cancer Stage 0

Cancer Stage 1

Cancer Stage 2

Cancer Stage 3

Cancer Stage 4

5.9%

25.5%

43.1%

21.6%

3.9%

Treatment: Surgery

Treatment: Radiation

Treatment: Chemotherapy

100%

60.8%

78.4%

Received Hormonal Therapy 66.6%

Lumpectomy

Mastectomy

29.4%

70.6%

Experienced Recurrence 7.8%

Months since the 1st breast cancer diagnosis (1–159) 24.5 (27.4)


Treatment–Related Experiences

Table 2 indicated challenges encountered by participants during treatments. The

challenges include financial difficulties, language barriers, health insurance issues, medical bills,

and access to necessary care. A significant proportion of participants reported “no problem at all”

in dealing with health insurance companies (51%), potential barriers to care due to insurance

(45.8%), financial difficulties (41.2%), and abilities to understand medical bills (41.2%). Only

29.4% of participants reported “no problem at all” when asked about language barriers when

communicating with medical professionals. One third of participants reported “some” and “many”

problems communicating with medical professionals (33.3%) and understanding medical bills

(27.5%). These results indicated that the majority of participants experienced little or no

difficulties in managing financial issues, dealing with insurance companies, understanding

medical bills, and receiving necessary care based on insurance policies. However, the results

further revealed that a significant proportion of participants experienced language barriers when

communicating with medical professionals and understanding their medical bills.

Table 2

Percentage of Treatment–Related Experience

Not a

Problem

Minor

Problems

Some

Problems

Many

Problems

Financial difficulty 41.2 27.5 13.7 17.6

Language barriers with medical

professionals

29.4 27.5 9.8 33.3

Issues with health insurance 51.0 23.5 11.8 13.7

Understanding of medical bills 41.2 21.6 9.8 27.5

Barriers to care due to level of

treatment coverage by insurance

45.8 33.3 4.2 16.6


Perceptions of Distress

Table 3 displayed results of diagnoses and treatments related distress levels reported by

participants. Although half of participants expressed fears of a second cancer diagnosis, cancer

recurrence, and metastasis, participants’ levels of distress concerning a cancer diagnosis and

distress related to specific treatments remained at the same level or improved after participating

in the cancer support program. Distinctively, decreased levels of distress related to the initial

diagnosis, fears of a recurrence, and cancer metastasis were reported following the completion of

the support group. It is crucial to note that participants experienced increased distress related to

possibilities of future surgeries. The majority of participants had a mastectomy and very few

opted for breast reconstruction. It is possible that changes in body image might contribute to

elevated distress levels.

Table 3

Percent Experiencing High Distress over Disease–Specific Items (n=48)

Pre-Test Post-Test % Change

Memory loss 27.1 27.1 0.0

Distress over initial cancer diagnosis 39.3 29.2 –10.1

Chemotherapy distress 31.3 31.3 0.0

Radiation distress 16.7 14.6 –2.1

Surgery distress 25.0 31.3 6.3

Fear of Recurrence 56.3 47.9 –8.4

Fear of metastasis 56.3 47.9 –8.4


Pre-Post Quality of Life

Table 4 displayed the results of FACT–B subscale scores for pre and post support group

measures. A total of 46 participants completed both measures. Paired–samples t-test results

indicated significances between pre and post-test measures of quality of life. For the comparison

purposes, normative FACT-B data collected from U.S. female cancer patients were included in

the table 4 (Brucker, Yost, Cashy, Webster, & Cella, 2005). The results of table 4 indicated that

there was no significant difference in the majority of scores of FACT–B subscales. The only

significant difference was Social/Family Well–Being. These results indicated that physical,

emotional, and functional well–beings for the participants remained stable despite treatment

experiences related to their cancer diagnosis. When compared to normative FACT–B data

collected from U.S. female cancer patients, the Chinese participants in this study reported a

slightly lower quality of life on the majority of subscales with the exception of the physical well–

being subscale. The Chinese participants in this study reported a 1.5 points lower mean FACT–G

scores than the general female cancer patient comparison.

Table 4

Mean and Standard Deviation for FACT–B Subscales: Chinese Participants (n=46) and U.S.

Adult Female Cancer Patients (n=1,271)

Subscale # Items Chinese

Pre-Test

Mean (SD)

Chinese

Post-Test

Mean (SD)

US Norm

Mean (SD)

t-test

Results

Physical Well–Being

(PWB, Score range: 0–28)

7 21.8 (5.1) 22.4 (4.4) 21.6 (5.8) –1.1

Social/Family Well–Being

(SWB, Score range: 0–28)

7 21.8 (4.5) 20.3 (5.5) 22.3 (5.3) 1.7*

Emotional Well–Being

(EWB, Score range: 0–24)

6 18.2 (3.9) 18.5 (3.8) 18.7 (4.5) –.8


Functional Well–Being

(FWB, Score range: 0–28)

7 18.8 (6.2) 19.1 (5.4) 19.5 (6.6) –.5

Breast Cancer Subscale

(BCS, Score range: 0–36)

9 21.2 (5.8) 21.2 (5.1) NA .1

FACT–General

(PWB+SWB+EWB+FWB)

27 80.6 (15.0) 80.3 (14.5) 82.1 (16.3) .2

Note: Paired–samples t test for the difference between pre and post measures of QOL for

Chinese participants as compared to Brucker, et al., (2005); *Significance value ≤ .10

Factors Affecting Quality of Life

A multiple linear regression was conducted to identify factors that might influence

quality of life on Chinese immigrant women related to a breast cancer diagnosis. Table 5

indicated the results of multiple regression analysis utilizing the five subscales of FACT–B and

FACT–G total on selected independent variables. Predictor variables in the analysis included age,

education level, number of years living in US, cancer staging, survival length, receiving

chemotherapy, financial difficulty, and language barrier. Language barrier was measured by

summing the scores of following three items: (a) having difficulty in communicating with

medical team, (b) difficulty in communicating with insurance company, and (c) couldn’t

understand medical bills. Each item was measured in a Likert scale from not problem at all

(coded 0) to very much (coded 4). The higher the scores, the greater level of language barrier

were experienced by the participants.

Examining the standardized regression coefficient and results of significance tests shown

in table 5, language barrier was the most important predictor explaining the variation of the

emotional well–being subscale scores, breast cancer subscale scores, and the FACT–G total

scores. Language barriers in communicating with healthcare team, dealing with insurance


companies, and understanding medical bills had negatively affected on the QoL among Chinese

immigrant breast cancer patients/survivors. Survival length had a positive effect on social well–

being, functional well–being, and the FACT–G total score. This result indicated that the longer a

person survived, the better QoL the person would have. Cancer staging negatively affected

emotional well–being and the FACT–G total score. It did not affect other dimensions of QoL

significantly. These results revealed that the nature of uncertainty for an individual with

advanced disease lead to additional emotional trauma. Age positively affected emotional well–

being. Older survivors tended to better adapted to life with breast cancer emotionally compared

to younger survivors. It is possible that older patients/survivors might have less worries

regarding vocational responsibilities and family responsibilities such as taking care of little

children. Many young patients faced potential conflicts between treatments and work schedules.

Contrary to the common beliefs, participants receiving chemotherapy reported having a better

emotional well–being. Emotional well–being subscale measured participants’ responses to

diseases in terms of feeling sadness, satisfaction toward the participant’s handing the disease,

loss hope in fighting the disease, feeling nervous, fears of death, and concerns regarding

conditions becoming worse. Perhaps, receiving surviving chemotherapy allowed participants to

gain confidence in coping with cancer diagnoses.

Table 5

Results of Multiple Regression Analysis of Quality of Life on Selected Variables (n=51)

Physical

well–being

Social

well–being

Emotional

well–being

Functional

well–being

Breast

cancer

subscale

FACT–general

Age (in years) -.05 (-.13)a -.04 (-.08) .16 (.46)** .07 (.15) .06 (.12) .14 (.11)


Education (1–5) .64 (.14) .16 (.03) .26 (.06) .09 (.02) .54 (.10) 1.15 (.07)

Months living in

U.S.

.00 (.00) .13 (.28) .01 (.02) .05 (.11) -.03 (-.08) .18 (.15)

Cancer Staging

(0 to IV)

-.50 (-.11) -1.19 (-.21) -1.54 -.38)** -1.45 (-.25) .11 (.02) -4.68 (-.30)*

Chemotherapy

(1=yes)

-.78 (-.08) 1.27 (.10) 4.52 (.49)** 1.56 (.12) -1.48 (-.12) 6.56 (.19)

Survival length

(in months)

.03 (.21) .06 (.30)* .00 (.02) .06 (.30)* .03 (.13) .15 (.29)*

Financial

difficulties (0–4)

-.59 (-.16) .00 (.00) -.69 (-.22) -.94 (-.21) -.66 (-.16) -2.21 (-.18)

Language barrier

(0–12)

-.28 (-.21) -.32 (-.19) -.50 (-.42)** -.33 (-.20) -.56 (-.36)* -1.43 (-.21)*

R2

Adjusted R2

.25

.11

.23

.08

.42**

.31

.29*

.16

.26+

.12

.38**

.27

Note: a: Unstandardized regression coefficient (standardized regression coefficient)

+: Significance level ≤.10; * Significance level ≤.05; **: Significance level ≤.01

Program Evaluation

A program survey was sent as a post support group measure in the ninth month after

participants ended their involvement in the group. The participants were invited to evaluate

specific elements of the program and services. When asked specific services that were helpful,

over half of participants identified following services: cancer seminars (91.7%), monthly support


group meetings (85.4%), patient navigation services/assistances (64.6%), monthly newsletters

(58.3%), follow–up phone calls (58.3%), and bilingual educational materials (54.2%).

When asked reasons for participating in the program, more than half of participants

responded: receiving useful information (87.5%), gaining cancer knowledge (87.5%), friendly

volunteers (81.3%), receiving support from people with the same cultural background (77.1%),

and addressing concerns regarding health (56.3%). These results revealed that this cancer support

program met the crucial needs for Chinese immigrant breast cancer patients/survivors. The

participants reported their appreciation toward the cancer information provided by the program

and this support program was culturally responsive and comfortable.

Discussion and Implication

Using collected self–report data prior to participation in this cancer support group and

again nine months following involvement in the group, allowed us to develop a better

understanding of issues related to quality of life for Chinese immigrant women diagnosed with

breast cancer. A significant proportion of Chinese breast cancer patients/survivors experienced

language and communication barriers during treatments. Language barriers regarding

communicating with medical teams, dealing with insurance companies, and attempting to

understand medical billing negatively affected quality of life (QoL), especially concerning

emotional well–being. The result was consistent with the findings of Yi et al. (2011), suggesting

that English proficiency significantly influenced distress symptoms of Chinese breast cancer

survivors. Amundson, Yeung, Sun, Chan, and Cheng (2011) argued that Chinese immigrants’

language barriers were related to communication skills rather than English proficiency because

of different interactional styles. Diverse cultural norms and expectations resulted in different

communication styles and increased Chinese immigrant’s communication challenges with


medical professionals (Bratter & King, 2008; Quek, Knudson–Martin, Rue, & Alabiso, 2010;

Tang, 2010; Wang et al., 2012). It is common that family members of Chinese patients requested

diagnostic and treatment information from medical professionals because of Chinese cultural

norms (Tsai et al., 2011). Chinese husbands are typically the decision-making authority for their

wives’ treatments. However, according to the Health Insurance Portability and Accountability

Act of 1996 (HIPAA), medical professionals are not allowed to disclose patients’ health

information to others including family members without patients’ consent. As a consequence,

cultural differences and diverse communication styles tended to result in misunderstanding or

disagreements between medical professionals and Chinese patients.

Chinese patients tended to believe in using Asian herbal medicine instead of western

medication for reducing side effects of medication (Lee–Lin et al., 2012; Wang et al., 2012).

Chinese patients might be reluctant when communicating with medical professionals regarding

their use of Chinese herbal medicine because the usage of Chinese herbal medicine is not

commonly accepted by doctors in the West. Not being able to fully communicate with medical

professionals might contribute to patients’ emotional distress and result in potential drug

interactions between pharmaceuticals and Chinese herbal remedies. Hence, it is imperative that

medical professionals consider minority patient language barriers and cultural differences,

especially when communicating cancer diagnoses and treatment options.

The results displayed in Table 2 indicated that 58.9% of participants encountered

difficulties in understanding their medical bills. Researchers suggested that written materials in a

patients’ native language and interpreters should be provided for adequate medical services

(Ahmad, Jandu, Albagli, Angus, & Ginsburg, 2013; Papadopoulos et al., 2007). Assisting

minority patients in understanding their medical treatments and related services, including billing


questions and side effects of medications, in their native language can enhance the quality of

treatments, reduce patient anxiety when receiving treatments, and prevent future disagreements

regarding medical bills. The patients’ evaluation of this program confirmed that bilingual

educational materials and the perception of friendliness from staff and volunteers improved

Chinese breast cancer patients’ use of the program.

Results indicated that the survival length of participants positively influenced participant

social well–being, functional well–being, and the FACT–G total scores. The longer patients

survive with cancer, the better functional and social well–beings were reported. These findings

indicated that with the side–effects of treatment gradually subsided, Chinese breast cancer

patients/survivors were able to enjoy life more and have better relationships with their families

and friends. Results further indicated that cancer staging might negatively affected participants’

emotional well–being. The result indicated a tendency that Chinese patients tended to reflect

their stress on their somatic pain rather than their emotional distress (Hairong et al., 2012; Wu,

Chi, Plassman, & Guo, 2010). Therefore, researchers should cautiously investigate Chinese

patients’ psychological distress in relation to their somatic symptoms.

Results regarding impacts of culturally tailored cancer support program on the quality of

life among Chinese breast cancer patients/survivors showed mixed findings. Based on self–

reports of the FACT–B data, Chinese breast cancer patients/survivors did not experience

significant changes in their quality of life nine months following the completion of the group;

however, scores remained stable between pre and post measures. The only significant change

was the social/family well–being subscale that measured the support that participants received

from social networks such as families and friends. The decreased mean scores revealed that

Chinese breast cancer patients/survivors perceived less support from their families and friends.


Therefore, we suggest that researchers include family members of Chinese cancer survivors in

future research for the purpose of reflecting effects from co–survivors—family members.

Researchers confirmed that support from existing social networks such as friends and families

improved the quality of life among breast cancer patents/survivors (Fumimoto et al., 2013; Susan

G. Komen for the Cure, 2013).

Results from the study indicated no significant changes between pre and post measures

for physical well–being, emotional well–being, functional well–being, side–effects of breast

cancer treatment (breast cancer subscale), and FACT–G total scores. Results from this study

reported no meaningful differences from the normative data of U.S. female cancer patients. One

possible explanation of the results was that Chinese participants tended to score responses at the

middle of the Likert-type scale with few responses at the extremes. This tendency appeared to

reflect the Chinese cultural norm of preserving dignity by not disclosing information to avoid

embarrassment or judgments (Ashing et al., 2003; Wang et al., 2012). This tendency might also

associate with cultural norms regarding a need for harmony and meeting social desirability (Li et

al., 2011; Quek et al., 2010). The tendency that Chinese participants provide socially desirable

responses would affect the results of a regression toward the mean. Based on the results of table

4, not only the mean between baseline and follow–up were comparable, the standard deviations

of the follow–up were generally smaller than the baseline. This result revealed two possibilities:

(a) participants tended to rate responses as neutral or in the middle of the extremes in order to

attend to social desirability or (b) their quality of life did improve slightly after nine months;

hence, the standard deviation of the post measure was generally smaller than the pre group

measure. It is recommended that future researchers conduct a mixed methods study to explore

how Chinese participants’ cultural norms might influence their responses to self–report.


Contrary to the findings presented by FACT–B, when participants reported their

perceived distress level over different types of treatment as well as cancer prognosis, they tended

to respond positively. Participants reported having reduced distress level over initial cancer

diagnosis, and fears of a second cancer diagnosis, cancer recurrence, and metastasis. It is

possible that participating in the cancer support program helped participants gain information of

cancer knowledge and skills in coping with psychological distress and anxiety. Therefore, their

distress levels were improved. In particular, meeting and communicating with women who had

completed the lengthy cancer treatment and were doing well allowed the participants to gain

confidence and hope. The findings indicated that a cancer support program with a variety of

services, including monthly support group meetings, educational seminars, individual peer

support, individual visits or phone calls by another survivor, patient navigation and referrals,

transportation and language assistance, and bilingual monthly educational newsletter, helped the

participants gain knowledge on cancer information to confront cancer progression, lower anxiety

of facing the second cancer diagnosis, and reduce emotional distress. Additionally, services

tailored individual needs such as transportation services, healthcare navigation services, and

interpretation services not only reduced participants’ challenges in attending cancer treatments

but also improved their functional well–being. It is possible that providing tangible resources and

disseminating health information in patients’ native languages through seminars and monthly

newsletters enhanced Chinese patients’ confidence in coping with cancer symptoms, adjusting to

daily functions, and improving quality of life.

This study also revealed that majority of Chinese cancer patients and survivors were

interested in gaining cancer information and health knowledge through educational seminars,

monthly support group meetings, monthly newsletters, and individual interactions. Based on


internal attendance records, the support group meetings with a focus on open discussion were not

favored by Chinese patients because of Chinese cultural norms of not disclosing negative

emotions or sharing distress with others (Lee–Lin et al., 2012; Papadopoulos et al., 2007). The

support groups that focused on educationally oriented discussion appeared to help Chinese

patients ease possible stress and anxiety related to potential breaches in culturally accepted social

norms. Structured information and dissemination in group settings and unstructured patient

navigation provided by friendly volunteers with the same cultural background helped Chinese

patients feel comfortable to participate in the cancer support program. These findings are

consistent with prior research that community–based ethnic organizations and support groups

help immigrants overcome language barriers and maintain identity (Ahmad, 2013; Papadopoulos

et al., 2007; Tsai et al., 2011). Results indicated that it is important to provide materials written

in the patient’s native language(s) to ensure Asian patients’ understanding of essential

information (Ahmad, 2013; Papadopoulos et al., 2007). Diverse populations would have

different concerns and levels of worries regarding cancer treatments and experiences. Thus,

healthcare professionals need to promote cultural sensitivity and competence when providing

services to diverse ethnic patients (Janz, et al., 2011; Lu, et al., 2012; Tsai, et al., 2011; Wang, et

al., 2012; Yi et al., 2011).

Limitations

Although this study sheds some lights on the literature regarding the adjustment patterns of

immigrant breast cancer patients, the study contained limitations including the small sample size.

Furthermore, there was no randomized control group, which reduces the generalizability of the

findings. The participants tended to rate mutual on the Likert scale of FACT–B because of the


Chinese cultural norm of meeting social desirability, which might affect the validity of data

collection.

Conclusion

Stress generated from immigration experiences and the unique cultural norms often

negatively affects immigrants’ adjustment to life with breast cancer. Culturally and linguistically

tailored outreach programs and support groups helped immigrant patients and their families

receive social connections and leverage additional resources to cope with cancer. Diverse

services provided by bilingual staff and volunteers, including group sessions with informative

topics, newsletter, one–on–one peer support, and patient navigation services helped immigrants

overcome language barriers and gain health information and coping skills without disclosing

personal information and cancer experiences to others. Thus, cultural sensitivity might play a

crucial role affecting the success of a support program to immigrant and minority patients.


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