Issues in Internet-Based Support For Chinese-American Breast Cancer Survivors

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Informatics for Health and Social Care

ISSN: 1753-8157 (Print) 1753-8165 (Online) Journal homepage: https://www.tandfonline.com/loi/imif20

Issues in internet-based support for chinese-


american breast cancer survivors

Yun Hu, Chingyu Cheng, Wonshik Chee & Eun-Ok Im

To cite this article: Yun Hu, Chingyu Cheng, Wonshik Chee & Eun-Ok Im (2019): Issues in
internet-based support for chinese-american breast cancer survivors, Informatics for Health and
Social Care, DOI: 10.1080/17538157.2019.1624967

To link to this article: https://doi.org/10.1080/17538157.2019.1624967

Published online: 07 Jul 2019.

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INFORMATICS FOR HEALTH & SOCIAL CARE
https://doi.org/10.1080/17538157.2019.1624967

Issues in internet-based support for chinese-american breast cancer


survivors
Yun Hua,b, Chingyu Chengc, Wonshik Cheeb, and Eun-Ok Imb
a
School of Nursing, Shanghai Jiaotong University, Shanghai, China; bSchool of Nursing, Duke University, DURHAM,
USA; cCollege of Nursing, Chang Gung University of Science and Technology, Puzi, Taiwan

ABSTRACT ARTICLE HISTORY


Objective: The incidence of breast cancer in Chinese-Americans is increas- Received 29 May 2018
ing. This article aims to present and discuss the challenges encountered in Accepted 25 May 2019
implementing an Internet-based coaching/support program for Chinese-
KEYWORDS
American breast cancer survivors and to provide direction for future
Breast cancer; survivors;
Internet-based interventions targeting this specific population. Internet-based support;
Methods: The data were collected from (a) interventionists’ diaries written issues
during individual coaching/support sessions with survivors, (b) minutes
taken during research meetings, and (c) written records of issues discussed
during the interventions. The data were analyzed using content analysis.
Results: The issues were categorized into eight themes. The following six
themes were identified among the survivors: (1) low computer literacy, (2)
ambivalent attitudes towards study participation (e.g., joining the project to
maintain a harmonious relationship with the gatekeepers versus lack of
trust in the project), (3) reticence to share opinions and experiences, (4)
struggles with family affairs (e.g., intergenerational cultural dissonance), (5)
overvaluing Traditional Chinese Medicine, and (6) specific participants’ pre-
ferences (e.g., language, font size, timing). Among the interventionists, the
following two themes were identified: (1) recruitment and retention of
interventionists and (2) language barriers.
Conclusions: Culture-specific challenges need to be considered when
designing and implementing an Internet-based coaching/support program
for Chinese-American breast cancer survivors.

Introduction
Breast cancer is the most commonly diagnosed cancer among Asian-American women, particularly
Chinese-Americans, and the incidence of this disease is increasing in this population. The rate of
female breast cancer in Asian Americans/Pacific Islanders in the United States increased from 85.3 per
100,000 females in 2009 to 91.1 per 100,000 females in 2013 according to the Centers for Disease
Control and Prevention.1 In addition, approximately 11 in 100 Asian-American women will be
diagnosed with breast cancer during their lifetime.2 The breast cancer mortality rates are stable
among Asian-American women, remaining at 11.3 per 100,000 among the Asian-American/Pacific
Islander population from 2010 to 2015. However, the mortality rate among the Non-Hispanic White,
Non-Hispanic Black and Hispanic populations has decreased to 0.3, 0.5, and 0.2 per 100,000,
respectively.3,4 In addition, Chinese-American breast cancer survivors (CABCS) are at risk for greater
distress and are less likely to resolve their issues/concerns on physical distress than non-Hispanic
White survivors.5 Most CABCS, especially immigrants, are unfamiliar with the U.S. healthcare system
and frequently encounter language barriers during the survivorship process.6 Racial/ethnic differences

CONTACT Yun Hu [email protected]


Color versions of one or more of the figures in the article can be found online at www.tandfonline.com/imif.
© 2019 Taylor & Francis Group, LLC
2 Y. HU ET AL.

in mortality rates, cancer care experience and social factors highlight the need to provide more support
to this specific population.7
The Internet is an ideal platform for providing support to CABCS. Due to the increased access to and
popularity of the Internet, its application for providing health information and real-time support for breast
cancer survivors has been reported in an increasing number of studies.8–11 Internet support groups provide
breast cancer survivors with the opportunity to share information, give and receive social support, decrease
anxiety, and gain a sense of empowerment.8,11 With its easy access, anonymity, and language capacity,
Internet support could bring particular benefits to CABCS with specific characteristics. In addition to the
commonly reported linguistic barriers, CABCS are generally not comfortable asking questions of their
physicians or making repeated communication attempts, leading to inadequate physician-patient
communication.5,6 Chinese women are less likely to disclose negative emotions, and thus, these CABCS
choose to hide their feelings, such as fear, anger, and depression to their families and friends.6 “Being
tolerant” is emphasized in Chinese culture.12 CABCS may even fail to disclose their diagnosis or condition
because they do not wish to burden their families.6 Another important cultural factor is cancer-related
stigma. In Chinese society, cancer is often attributed to some immoral behavior by the individual or an
ancestor, therefore, is the result of karma or stigma.6 This karmic belief may not only result in self-blame
but may also prevent an open discussion of the illness because this discussion could bring shame to the
entire family.13 First-generation Chinese immigrants lack access to social support and experience difficul-
ties in obtaining information about the healthcare and insurance system.14 It seems that traditional cultural
beliefs play a significant role in how these individuals perceive and respond to health changes.6 Therefore, it
is not surprising that Chinese people have a high reliance on the Internet and media sources in their native
language and culture.14,15 Yoon reported that among the foreign-born population, the Internet was the
most dominant source of health information (57%) and that its use was much more common than
obtaining information from health care providers (22%).16
However, while Asians, including Chinese, have shown an increase in the behavior of accessing
the Internet for cancer information that is even higher than that in the Hispanic and Black
populations, knowledge is limited regarding best practices in implementing an Internet-based
intervention for this specific population in the United States.17 Thus, it is essential to identify
potential issues in implementing an Internet support program and provide culturally sensitive online
interventions for this population.
The aim of this study was to identify and analyze issues and strategies related to an Internet-based
support program for Chinese-American breast cancer survivors. The following research questions
were addressed in this study: (1) What issues emerged during the Internet-based support program
for Chinese-American breast cancer survivors? (2) What strategies were used to cope with the issues
in the Internet-based support project?

Original study
The purpose of the ongoing original study was to test the effects of an Internet-based program that
provides information, coaching and support to Asian breast cancer survivors who reside in the
United States regarding their survivorship experience.
The original study adopted a randomized pretest/posttest control group design. The participants in
the control group were asked to review information about breast cancer by the American Cancer Society
(ACS) in English and traditional Chinese. The participants in the intervention group were asked to
review information provided by the ACS and participate in an Internet program that included educa-
tional modules (slides about breast cancer diagnosis, treatment, genetic testing, alternative medicine, and
symptom management), discussion forums (weekly introductions and discussions of a new topic related
to breast cancer survivorship), one-on-one coaching (weekly one-hour coaching sessions according to
the needs and assessment of the survivor), and Internet resources (general and culture-specific website
resources) provided in three languages (English and Mandarin Chinese, which included simplified
Chinese and traditional Chinese). Every component of these four interventions included general and
INFORMATICS FOR HEALTH AND SOCIAL CARE 3

cultural specific information. For instance, the discussion forums included not only general topics (e.g.,
concern about financial problems after treatment) but also culture-specific topic (e.g., taking traditional
Chinese herbs). All information was provided through the project website, which was established on
a university server. A questionnaire was used to assess the demographic information (i.e., age, marital
status, income, employment status, educational level, and length of residence in the United States), type
of help needed, psychological and physical symptoms, and quality of life. Considering participants’
individual needs, the interventionists provided coaching, guided participants in reviewing the slides and
Internet resources, posted 1–2 topics and encouraged participants to join the weekly discussion forums.
More detailed information is reported in a separated paper.18 The intervention lasted three months. The
effects were evaluated at the beginning of the intervention, the end of first month and the end of the
third month. The interventionists were two bilingual RNs. Both interventionists were Chinese indivi-
duals who had lived in the US and had a PhD and a Master’s degree. To ensure the reliability and
validity of the intervention, the PI held a training session to ensure that the interventionists obtained and
maintained the knowledge and skills necessary to competently deliver the intervention. The PI intro-
duced the aim of the study, the design, and the operation of the redcap and the Technology-based
Information and Coaching/support program for Asian American women living with breast cancer
(TICAA) website, which were used for the online survey and project website, respectively. The protocol
of the intervention, including the topics of the online forum and one-on-one coaching sessions, was
provided to the interventionists. During the intervention, the two Chinese interventionists attended
biweekly meetings with other Asian interventionists to discuss challenges, identify solutions, and share
experience and skills. The other interventionists were in charge of separate Korean and Japanese
intervention programs. Each interventionist handled 3–5 participants in each intervention group.
Some professional concerns resulted in inquiries to physicians, who were consultants to the project to
ensure that the information was delivered correctly. Research diaries were recorded after the coaching
was completed and submitted to the coordinator weekly to monitor the quality of the intervention
delivery. Although the interventionists were not involved in the design of the program, their feedback
was used to refine the program throughout the study process.
According to the literature, Asian Americans represent a heterogeneous group that cannot be
considered one group that can be approached in a unified way.19 Thus, the original study included
the following three subethnic groups of Asian-American breast cancer survivors: (a) Chinese, (b)
Korean, and (c) Japanese. As part of the original study, CABCS were selected for this paper because
this group was the largest, and the issues identified among the three subethnic groups differed
substantially due to cultural differences.
The inclusion criteria for the Chinese-American participants were as follows: (a) Chinese-
American women who (b) were over the age of 20 years, (c) were diagnosed with breast cancer
during the prior five years, (d) were able to read and write English or Mandarin, and (e) had access
to the Internet. The recruitment process included personal/organizational referrals and website/
newspaper announcements. Initially, 45 women from 8 states were enrolled in the study. Of these
women, 14 women were excluded because they did not meet all the criteria or failed to complete the
screening survey or post-study survey. The mean age of the participants was 55.1 years (SD = 8.5),
96.8% of the participants had completed high school, and 68.7% of the participants were married.
The participants had lived in the United States for a mean of 8.5 (SD = 9.5) years, and 56.3% of the
participants had an annual family income less than $20,000. The participants had been diagnosed
with cancer within the prior 5 years, with a mean of 3.7 years (SD = 2.3) prior.

Ethics
This study was approved by the Institutional Review Board of the institution with which the researchers
are affiliated.
4 Y. HU ET AL.

Theoretical framework
Lasswell’s 5 W model (Who, Says What, in Which Channel, to Whom, and With What effect) was
used to systematically approach the issues in implementing the intervention among Chinese
women.20 This model has been widely used as a framework for communication, such as health-
related decision making,21 course development,22 and new media communication.23 The modified
model for this study is illustrated in Figure 1. In this study, the “Who” were interventionists, “Says
what” and “in which channel” were conceptualized as the intervention process itself, “To whom” was
the survivors, and “With what effect” was conceptualized as issues that occurred in the project
according to the aim of the study.

Methods
Data collection
The data were collected from (a) the interventionists’ diaries from the individual coaching/support
sessions (b) minutes taken during the weekly research meetings, and (c) written records of the
challenges and issues discussed during the interventions. The interventionist wrote the diaries and
recorded the communication between the interventionists and the survivors after each coaching
session. In addition, interventionists recorded memos of the discussion with the other interven-
tionists about the recruitment, retention and coaching issues during the biweekly meeting.
Furthermore, the research team also had weekly meetings to discuss and document emerging or
existing issues. All the data reflected the issues and challenges that both the interventionist and
participants confronted during the program.
The data collection lasted for 7 months, beginning at the initial implementation of the project in
January 2017 and ending in July 2017. The data collection stopped after the first two groups of
participants completed the intervention because the data had reached saturation for repetitive issues,
and similar questions were occurring and recorded in the research diaries and meeting memos. In

Figure 1. The theoretical framework.


INFORMATICS FOR HEALTH AND SOCIAL CARE 5

total, there were 26 pages of research diaries on 13 Chinese participants in the intervention group. In
addition, 41 pages of minutes and written records were included.

Data analysis
Content analysis, including open coding, creating categories and abstraction, was used to describe
the issues of the intervention program.24 First, the data were open coded using a line-by-line coding
process. The analysts immersed themselves in the data to become completely familiar with them.
Each letter, word, sentence, and portion of the page were coded as the unit of analysis. Then, the
codes were grouped into broader categories. Finally themes reflecting the challenges in implementing
the program were extracted using content analysis.24,25 Each stage was performed several times to
maintain the quality and trustworthiness of the analysis. To increase the validity, two analysts
performed the analyses separately. One was the interventionist, and the other was one of the research
team members. Both were bilingual in Chinese and English, and had PhD degrees in nursing. Then,
the themes were compared and discussed until both analysts reached a consensus regarding the
themes. Different sources, including random notes, meeting minutes and diaries collected from
researchers and interventionists, were used to perform triangulation to confirm the results.26

Results
Eight key themes of challenges emerged from the data analysis process and were categorized into
themes related to survivors (6 themes) and interventionists (2 themes). The themes of challenges
related to the survivors included (1) low computer literacy, (2) ambivalent attitudes towards study
participation, (3) reticence to share opinions and experiences, (4) struggles with family affairs, (5)
overvaluing Traditional Chinese Medicine (TCM), and (6) specific participants’ preferences (e.g.,
language, font size, timing). The themes of challenges related to the interventionists included (1)
recruitment and retention of the interventionists and (2) language barriers (see Table 1)

Low computer literacy


Because the intervention included Internet education and coaching/support, the participants were required
to use the Internet to review educational information and communicate with the interventionists via e-mail

Table 1. Issues in internet support.


Framework Themes Strategies
Survivors (to Low computer literacy A manual of operation was provided.
whom) Volunteers were arranged to support the internet operation.
Ambivalent attitudes towards study Nicknames and passwords were used to protect the privacy.
participation
Reticence to share opinions and The participants were regularly encouraged to share their experience,
experiences and reassured on confidentiality and safety by the interventionists.
Struggling with family affairs The interventionists tried to be good listeners and show
understanding and empathy to the survivors.
Overvaluing Traditional Chinese Individual coaching was combined with educational models and
Medicine internet resources to correct any misinformation.
Specific Participants’ Preferences (e.g., The font size was enlarged in the project website.
language, font, and timing) The time for coaching was negotiated and fixed while considering
the participants’ schedules.
Interventionists Recruitment and retention of The interventionists were regularly trained before and during the
(who) interventionists intervention.
Language barriers The interventionists were asked to be careful and patient in their
communication with the participants.
The interventionists tried to use various methods of communication
to minimize potential miscommunication.
6 Y. HU ET AL.

and chat functions. However, most Chinese participants reported that they did not check or rarely checked
e-mails. The participants were accustomed to using a Chinese app to communicate in their daily lives and
work. Consequently, the participants often did not respond or responded very late to our e-mails. Even
those participants who used a smartphone app were not adept at typing messages, especially since some of
the participants had poor vision. One 74- years-old participant (non-infiltrating, HER2 Positive, stage III)
suggested,
“How about we use the voice chat feature of WeChat? It is convenient and free.”
Some participants claimed that they could not see the survey clearly. Occasionally, the interven-
tionists had to read the individual survey items to the participants or ask for support from the person
who referred the participants. Volunteers were arranged to help the participants complete the survey
and account registration when necessary.
In another situation, the participants used computers provided by cancer communities rather than
personal computers. Due to the inconvenience of computer access and the participants’ low computer
literacy, conducting Internet group discussions and individual coaching was difficult. Unfortunately,
some participants threatened to withdraw from the study because of their inability to use a computer.
Thus, the interventionists provided a manual with step-by-step instructions, applied for an e-mail
account upon their request, and explained the study repetitively when necessary.

Ambivalent attitudes towards study participation


Many survivors participated in the project by sharing information from gatekeepers or familiar
survivors. Especially in some cancer communities, some survivors were willing to join the project
when they found that other survivors had joined the project. Participating thus often became merely
a common conformity behavior for Chinese participants. These participants superficially believed
that this study was a reliable project that was introduced by familiar persons. Some participants did
not carefully review the informed consent. Consequently, these individuals did not know that they
had to complete surveys at three separate times or participate in interventions even though the
informed consent form outlined the study requirements.
Although they trusted the project, the participants also expressed security concerns. The partici-
pants wanted to be sure that their privacy was protected, since some sensitive information, such as
family income and zip code, was collected in the survey. As one participant (46-years-old, non-
infiltrating, stage I) stated,
“I don’t want to fill out your survey because you want me to give my personal information. Maybe your website
will be hijacked. Then everybody will know my information.”

The poor understanding of the project and the skeptical views led to less active involvement of survivors in the
intervention.

In this study, nicknames and passwords were used to protect the privacy of the participants. Only the
participants in the interventionist group could see the content posted on the forum. Furthermore,
the aim and consequence of the project were explained and shared by the interventionists and early
participants to obtain authentic trust and recognition by survivors.

Reticence to share opinions and experiences


The participants in this study enjoyed sharing experiences with their peers but were hesitant about
sharing their thoughts with individuals whom they did not know or expressing their thoughts in a group
discussion. One middle-aged participant (infiltrating, stage III, ductal carcinoma in situ, DCIS) said,
“I seldom talked about my disease with others. Only some of my family members and close friends know my
situation. Actually, I am not confident at all because I lost a part of my body. I do not want to get sympathy
from others.”
INFORMATICS FOR HEALTH AND SOCIAL CARE 7

When they responded, they provided only positive, socially acceptable answers that in reality might
not be entirely true. Participants’ lack of confidence also reflects that they seldom question physi-
cians. Sometimes, the participants were confused about the information and instructions given by
their physician, but they did not clarify their confusion with their physician.
These participants needed to be frequently encouraged to be open with the researchers and their
fellow cancer survivors so that they could help other individuals in similar situations. The partici-
pants also needed to be reassured that their identities would be protected.

Struggling with family affairs


The disease was not the only thing that the participants needed to manage. After the participants began to
trust the researchers, they opened up about the effects of breast cancer on their daily lives. Spousal and
intergenerational conflicts and fears for their children were two of the most common concerns.
For example, one 56-years-old participant (infiltrating, stage I) said that she lived with and cared
for her elderly father. However, her husband disagreed with this decision since she had lost her job
and the family income was low. The woman expressed her difficulty in fulfilling her responsibility as
a daughter. Consequently, negative emotions increased due to more frequent quarrels between the
survivor and her husband. Generally, children care for their elderly parents in a filial culture.
However, intergenerational cultural dissonance is inevitable in such immigrant families. For
instance, one elderly participant (infiltrating, stage II) expressed her disappointment and loneliness,
“My son does not live with us. It has been more than half a year since he came to visit me last time. I do not
understand why he lived in a hotel since he came home.”

In addition, the role of the major nurturers and caregivers in the family was an essential part of Chinese
women’s identity and was even a priority in their lives.6 The middle-aged survivors were more expressive
about their fear for their children. For instance, one 45-years-old participant (non-infiltrating, DCIS,
stage I) who had two children, both of whom were elementary school students, said,
“I worried that if I died and the children were still young, how could they take care of themselves?”

She also felt guilty regarding her son. “I did not care for my child when I was receiving chemother-
apy. Now, he is addicted to playing games on the iPad.” This feeling of being incapable of fulfilling
motherly responsibility was another source of distress among these women.
Family relationships represent a common and troubling issue for many participants. The inter-
ventionists needed to be good listeners and show their understanding and empathy towards the
situations that the participants faced. In addition, the interventionists could share information since
they may also have had a child in a rebellious stage of life or may have lived in a large family.

Overvaluing Traditional Chinese Medicine


The participants greatly valued TCM. Many survivors used traditional herbs, acupuncture, and Tai Chi
to achieve a balance between “Yin” and “Yang,” which was thought to be the key to health. For instance,
the participants ate herbs and kudzu vine root to relieve edema, and some participants took Cordyceps
sinensis to improve immunity and kill cancer cells. Some participants used acupuncture to relieve edema
and pain. Some participants preferred Tai Chi as an ideal exercise to promote the flow of “Chi” and
improve their quality of sleep and health. Notably, the participants also liked to discuss other alternative
therapies, including meditation and yoga. However, some survivors overvalued TCM and searched for
a variety of panaceas. The participants erroneously believed that Chinese herbal medicine did not have
side effects. Upon hearing that an herb was effective, some participants took it without a prescription
from a Chinese physician. The interventionists had to explain the basic theory of TCM to these
participants. The coaching sessions combined with education slides and Internet resources were
designed to help survivors develop accurate ideas and ensure the safe use of herbal medicine.
8 Y. HU ET AL.

Specific participants’ preferences


The project website was developed in simplified Chinese and traditional Chinese. Although most of the
text on the project website was in Mandarin, some text was in English. For example, the instructions for
account registration were originally provided in English. Thus, some participants could not create
accounts because they could not understand the instructions. The interventionists had to explain and
guide the participants step by step in Chinese. Another concern was the font size used on the project
website. Because the participants tended to be older, many participants had vision problems and could
not read the small font sizes. One 74-years-old participant (non-infiltrating, HER2 positive, stage III)
said, “I cannot see the words. The font is too small. And I have no idea about how to enlarge the words.”
Thus, the original font size on the project website was enlarged.
Most participants preferred to use specific communication apps (e.g., WeChat, Line) for individual
coaching/support. The app was also very helpful in recruiting participants. We placed an ad in the
New York area for the chosen app and received 7,262 clicks in one day; resulting in the recruitment of 8
participants. However, as apps have privacy risks, the chosen app was used only when the participants
asked to use for individual coaching/support; many of the participants rarely used email and had low
computer literacy. In addition, nick-names for their accounts were used instead of real names, and other
identity information was blocked to ensure confidentiality during communication.
Because the participants were nationally recruited, time differences between the participants and
the interventionists became an issue. To fit the participants’ busy schedules, the timing of individual
coaching sessions was set based on their preferences, and the time was not always within the
interventionists’ working hours. For example, one participant on the West Coast set a session at 9
p.m. For the interventionist who lived on the East Coast and worked during the day, this time
required staying up until midnight to begin the individual coaching sessions. Some sessions were
long, making this part of the program particularly difficult for the interventionists. In addition, some
participants preferred to hold coaching sessions over the weekend or on holidays to avoid conflicts
with their working hours; however, this timeframe conflicted with the schedule of the interven-
tionists. Therefore, one interventionist was in charge of 4–5 survivors in the intervention group to
control the workload, and a time for coaching was negotiated and fixed with the survivors to avoid
needless waiting.

Qualifications and training of interventionists


The basic requirements for the interventionists in this study were as follows: registered nurses (RN)
who were bilingual in English and Mandarin, understood the intervention, were knowledgeable
about breast cancer and its related care and were good communicators and proficient in using
computers. The duties of the interventionists were first to recruit participants and then carry out the
intervention. Recruiting and retaining eligible interventionists was slightly difficult since the project
was conducted in a local area with few Chinese RNs. Therefore, before the intervention, it was
essential for the PI and coordinators who designed the intervention program to hold regular training
sessions for the interventionists regarding the content of the project, the online survey, the coaching/
support process, and the online forum by the PI and coordinator who designed the intervention
program. In addition, because the interventionists needed to address the participants’ many complex
questions and difficult emotional issues, their emotions were also affected. Often, the interventionists
felt frustrated because the recruitment was very slow or the participants were not open with them.
Support meetings for the interventionists were held biweekly. The meetings helped the interven-
tionists release their stress, express their frustrations, discuss problems and support each other. For
example, one interventionist was confused about how to talk to a participant who seemed to be
performing well in self-management: “I do not know how I can support her.” Another interven-
tionist shared her experience:
INFORMATICS FOR HEALTH AND SOCIAL CARE 9

“My participant had a similar situation. Therefore, I encouraged her to share her experiences and positive
attitudes toward disease and life online with other participants. It is a kind of support, too. The participant was
more confident and satisfied with herself. Her experiences positively influenced others too.”

The peer support meetings provided the interventionists with personal support and tried-and-tested
solutions for their patients who were confronting similar situations.

Language barriers
All of our participants were first-generation Chinese immigrants from Mainland China, Taiwan or
Hong Kong. Most participants were not fluent English speakers. Although all participants spoke
Mandarin, the individuals from China, Taiwan and Hong Kong used different terms to describe the
same thing. Therefore, it was important to accurately translate and interpret the participants’ statements
and to respond to the participants’ questions consistently using the same professional terminology. For
example, “hormone” was translated as “激素” in simplified Chinese and “賀爾蒙” in traditional Chinese.
It is preferable to have interventionists from Mainland China and Taiwan or Hong Kong, who can better
understand the slight cultural differences and make accurate translations.
Furthermore, some older participants communicated in Chinese dialects during the individual
coaching sessions. These dialects, especially the dialects from Southeast China, are pronounced quite
differently from Mandarin. One interventionist said,
“It is a little hard to fully understand the old lady. Her Mandarin mixed with the accent of Minnan Language.”

The interventionists had to be careful and patient with the participants to ensure accuracy.

Discussion
The findings reported in this paper reveal the challenges in implementing an Internet-based support
program for Chinese-American breast cancer survivors. These challenges are consistent with find-
ings reported in the literature indicating that language barriers and limited access to a computer
detract from the effectiveness of Internet-based interventions.8 One study found that 44% of Chinese
Americans had conversations in their native language; this rate was much higher than that among
other subethnic groups of Asian Americans (13% among Filipino Americans and 18% among
Japanese Americans).21 In addition, individuals from different parts of China speak different dialects.
Thus, accurately translating and interpreting the participants’ statements was difficult but important.
As reported above, the participants’ ambiguous attitude towards the project was another issue.
China is a nepotistic society (GuanXi network) rather than a contract society.27 The major motiva-
tion of some participants was to give face to a gatekeeper or a friend rather than to improve their
health. Moreover, conformity behavior is another cultural tradition for Chinese. Since many
survivors in the same cancer group had joined the project, it is preferable for all in the group to
join, because it is difficult to develop a harmonious relationship if someone does not maintain
consistency with other group members.28 Although they trusted the project because of their
familiarity with the person who referred them, it took time to gain real trust from the survivors.29
In our study, the participants were reluctant to share their experiences with other survivors even
anonymously. There is a social stigma attached to breast cancer, which may have prevented the
participants from sharing their experiences.6 Some participants interpreted their cancer’s origin as
the law of karma or bad Feng Shui, as reported in Tsai’s study. Many Chinese are ashamed to admit
that they have breast cancer because it could influence their entire family.13 During the individual
coaching, some participants seemed to follow instructions very well and manage the disease
efficiently at the beginning of the project, which was consistent with a previous study.30 Chinese
culture dictates that a survivor who gives negative answers, even though they are honest answers,
fails to present an image of the whole self and loses face.31 This phenomenon may also be related to
10 Y. HU ET AL.

the typical Chinese social etiology, which is similar to an onion. The individual represents the center,
the family represents the closed circle, and the next circle includes relatives and friends. Strangers are
on the outside of the circle.32
In addition, we found that the participants often did not even disclose their confusion and distress
to their physician, which would lead to insufficient patient-physician communication. This may be
because in Chinese culture, healthcare professionals, especially physicians, are considered
authorities.33,34 Chinese patients demonstrate their respect and listen to them without asking
questions or giving opinions.6,35 Interestingly, the participants in this study tended to feel more
comfortable sharing their concerns with the interventionists who were nurses rather than with their
own physicians. Due to this tendency, nurses could be an important source of support to Chinese
breast cancer survivors.
Over time, the participants in this study began to trust the interventionists and started to talk
about disease-related issues and personal stressors. Often, family concerns take precedence over
individual needs and treatment since Chinese cultures are family-oriented.36 Among elderly survi-
vors, conflicts with adult children were a major concern. Their children were more acculturated
because they were U.S.-born Chinese or had lived in the U.S. longer than the survivors. Therefore,
generational conflicts frequently emerged because of the cultural difference.37
Recruiting and maintaining qualified bilingual interventionists was difficult. There is a general
scarcity of Chinese RNs in the U.S., and oncology nurses who must constantly address death and
dying are subject to great stress.38,39 Negative emotions were among the main issues that the survivors
needed to share with the interventionists, which had an adverse effect on the interventionists.40
Most participants in this study were of low socioeconomic status. Many of them had a high school
education or less, did not work, or worked part time (e.g., as a house maid) and reported an annual
family income of less than $20,000, which was insufficient for their families. Among cancer
survivors, a young age (18–34 years), college education, and income of more than US $75,000 are
characteristics of survivors who are likely to seek information on cancer.41 We believe the same
applies to Chinese-American breast cancer survivors with high income and advanced degrees. These
patients will search for information by themselves because most of them do not have language
barriers, and they do not necessarily rely on the use of Mandarin on the Internet. Therefore,
Chinese-American breast cancer survivors with low socioeconomic status represent the population
that needs coaching and information sharing in Mandarin. Generally, these people have a low level
of computer literacy. To resolve the contradiction between people and technology, it is necessary for
interventionists to determine the participants’ computer skills, explain how to use the Internet and
provide a detailed manual at the beginning of the intervention.
This paper has several limitations. First, this paper reports only the issues that were found in the
process of implementing an Internet-based support program among Chinese-Americans. Thus, the
findings may not be generalizable to other populations. Second, although the original study was
conducted nationwide, most participants were recruited from large cities and they tended to have
low socioeconomic status, which might have biased the issues discussed in the paper.

Conclusion
In this paper, issues in implementing an Internet-based support program for Chinese-American
breast cancer survivors were discussed. Despite the practical issues discussed above, this study
provides a foundation for further research on Internet-based support programs for this specific
population and other Asian-American patients with similar cultural backgrounds. Based on the
issues that were discussed, the following implications for future research and practice are proposed.
First, the participants’ low computer literacy, lack of trust, and reluctance to share their experi-
ences were major challenges in this study. Therefore, we recommend that researchers and health care
providers working with this specific population consider potential participants’ computer compe-
tency and their specific preferences in their future research adopting the Internet as a research
INFORMATICS FOR HEALTH AND SOCIAL CARE 11

medium. Also, researchers and health care providers who want to use an Internet-based program
among this specific population need to consider that plain language, large fonts, short surveys and
easy operation would work well for this specific population, especially for those of advanced age.
Involving a Chinese advisory panel from the beginning of the study is also recommended to identify
participant/users’ specific preferences related to the intervention process and to ensure that the
intervention is culturally sensitive. The members of this panel could include cancer survivors, their
family members, gatekeepers or volunteers with experience working with Chinese breast cancer
survivors.42 In addition, little is known about how family affairs affect Chinese women’s breast
cancer survivorship experience. Thus, future research is needed on the dyadic relationships between
survivors and their families, and special intervention strategies related to family affairs need to be
developed.
The qualifications and training of the interventionists were also very important in implementing
the program in this study due to all the discussed issues related to the interventionists and the
survivors. We recommend forming a consultation team comprising physicians, pharmacists, phy-
siotherapists, psychological counselors, and nursing specialists to assist the interventionists when
participants present problems that exceed the interventionists’ knowledge and experience. Periodic
research support meetings are also recommended to relieve the interventionists’ stress and increase
their knowledge and problem-solving ability.

Declaration of interest
The authors report no conflict of interest.

Funding
This work was conducted as a part of a larger study that was funded by the National Cancer Institute (NIH/NCI)
under Grant 1R01CA203719; .

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