Chinese‐Australian women with breast cancer call for culturally appropriate information and improved communication with health professionals

Abstract

Background

For culturally and linguistically diverse patients, breast cancer presents complex physical, psychosocial, and health care challenges, often exacerbated by a lack of culturally appropriate information and communication barriers with the treating team (even with the help of interpreters).

Aim

This qualitative study aims to broadly explore the experience of breast cancer and coping strategies utilized by Chinese‐Australian women.

Methods and results

Twenty‐four Chinese‐Australian women with breast cancer participated in either a semi‐structured interview or a focus group conducted in participants' preferred language, audio‐recorded, transcribed, and subjected to thematic analysis. Two prominent themes emerged, related to information seeking, and communication with health care professionals. The theme of information needs and seeking highlighted unmet information needs and the multiple sources that are consulted for information. The second theme, communication with health care professionals, language barriers, and preferences, identified varying degrees of involvement in treatment decision‐making, preference for information and interactions in Cantonese or Mandarin, and problems with interpreter services.

Conclusion

Chinese women with breast cancer face significant challenges in obtaining adequate information and can feel excluded from treatment decision‐making. Women in this study expressed their eagerness for obtaining accurate information and engaging in open communication with their doctors. There is a need for culturally sensitive information resources and decision aids to enhance communication between Chinese migrant patients with cancer and health care professionals. Clinician participation in cultural awareness training is also recommended.

1. INTRODUCTION

Australia, one of the world's most culturally diverse countries, has a significant population of immigrants from China, representing 2.0% of the total population.1 The risk of developing breast cancer increases markedly for women of Chinese descent upon migration to Australia.2 The complex physical, psychosocial, and health care challenges faced by women diagnosed with breast cancer3, 4, 5 are exacerbated for immigrant patients, who have difficulty accessing resources in their own language, experience communication barriers with their treating team, and lack familiarity with the health system, leaving them feeling misunderstood, isolated, and overwhelmed.6, 7, 8, 9, 10 Furthermore, patients from minority groups experience distinctly different needs from the mainstream due to cultural beliefs and values, which in turn, influence their healthcare practices.11

Improving cancer care for migrant women is not isolated to Australia alone where this remains a challenge on an international level. Findings from a Danish study indicate a trend toward migrant women being more likely to have an unknown stage of disease compared to native Danish women.12 This highlights potential cultural and linguistic barriers to healthcare as well as lack of understanding of the health care system. Findings from a systematic review also show that Hispanic patients in the United States experience worse distress, depression, and quality of life, highlighting significant disparities between ethnic minority and majority groups.13

Qualitative studies paint a picture of isolation and challenge. Kwok and White8 reported that Chinese‐Australian women perceive breast cancer as a “white women's disease” (p. 89), which exacerbated their emotional distress and led to feelings of shame. Identifying the need for culturally appropriate information resources, Kwok and White8 concluded that their participants perceived existing resources as being “designed solely to suit the needs of Caucasian women” (p. 91), which reinforced the beliefs of Chinese‐Australian women that they belonged to a marginalized group. Lee et al.14 reported that depression, anxiety, and stress were common experiences for Chinese and Korean migrants, who felt they had limited ability to cope and significantly less social support than breast cancer patients would have in their home countries.

Potentially distinguishing features between the experiences of native and migrant Chinese patients with breast cancer are access to cancer‐related information in their native language and communication with health care providers. Although information is available in China, Taiwan, and Hong Kong, native Chinese women consistently report unmet information needs across all stages of breast cancer.3, 15, 16, 17, 18 Similar information needs have also been identified among Iranian breast cancer patients where some women expressed dissatisfaction with the information provision from their health care providers and nurses.19 The above studies suggest that unmet information needs may be a universal challenge, regardless of migration status. This is confirmed by systematic review findings, which indicated that information needs did not differ between Chinese natives (i.e., Hong Kong, China, Taiwan, and Singapore) and migrants (i.e., Australia and the United States).20

Regarding communication challenges, an Australian comparison study revealed that Chinese migrant cancer patients experienced more difficulties with understanding the healthcare system and communicating with their health care team, compared with their Arabic and Greek migrant counterparts.21 Although using interpreters could potentially eliminate communication barriers, the quality of such services is questionable. Butow et al. have found that the presence of interpreters in an oncology consultation led to reduced verbal interaction, less information provision, reduced responding to cues for emotional support, fewer messages of hope, and an increased use of medical jargon.22, 23 Furthermore, several studies report errors of omission and inaccuracy,24, 25, 26 which seem to be more prevalent in consultations involving the presentation of prognostic information.22 Interpreters are also not always accessible when required or available in the range of language groups.27 Despite the significant communication challenges, Chinese migrants in Australia and the United States have also shared positive experiences where they felt comfortable with the interpreter and spoke favorably about their interaction with their doctor.21, 28

There is limited research that qualitatively examines the information needs and communication challenges for Chinese migrant women with breast cancer. The aim of this qualitative study was to broadly explore the experience of breast cancer and coping behaviors utilized by Chinese women living in Australia. Based on published literature, it was anticipated that information seeking and engagement with health care professionals would emerge as important issues.

2. MATERIALS AND METHODS

2.1. Research design

This descriptive study included in‐depth semi‐structured focus groups and individual interviews conducted with Chinese‐Australian women diagnosed with breast cancer. The study was approved by the South Western Sydney Local Health District Human Research Ethics Committee (HREC/14/LPOOL/538).

2.2. Sample and recruitment

CanRevive, the oldest and largest Chinese cancer support organization in Australia, facilitated the recruitment of women with breast cancer, who (i) identified as being of Chinese heritage, (ii) were aged 18 years or over, (iii) were diagnosed with breast cancer in the past 2 years, and (iv) were not diagnosed with a cognitive impairment or mental illness. CanRevive staff informed potentially eligible women about the study during a support group meeting or via mail. Interested women could attend a focus group at predetermined times or contact the research team to arrange an interview. A total of 24 eligible women consented to participate, of whom 23 participated in one of three focus groups (120 min duration) and one in a semi‐structured interview (60 min duration). Participant characteristics are summarized in Table 1.

Table 1.

Participant demographics

		n	%
Country of birth*	China	13	61.9
	Hong Kong	3	14.3
	Vietnam	3	14.3
	Cambodia	1	4.8
	Kenya	1	4.8
	Total	21	100.0
Language spoken at home*	Cantonese	11	73.3
	Mandarin	2	13.3
	English	1	6.7
	Both Cantonese & Mandarin	1	6.7
	Total	15	100.0
Current marital status*	Single	5	26.3
	Married or partnered	14	73.7
	Total	19	100.0
Living situation*	Live alone	3	15.8
	Living with family	15	78.9
	Living with relatives other than immediate family	1	5.3
	Total	19	100.0
Education*	Secondary school	11	55.0
	Post‐secondary education	9	45.0
	Total	20	100.0
Postcode*	Major City	15	88.2
	Inner Regional	2	11.8
	Total	17	100.0
Employment*	Employed	6	31.6
	Unemployed/Retired	5	26.3
	Household duties	4	21.1
	Other	4	21.1
	Total	19	100.0
Time since diagnosis*	Less than 6 months	1	5.9
	6‐12 months	8	47.1
	More than 12 months	8	47.1
	Total	17	100.0
No. of treatments*	1	1	4.8
	2	6	28.6
	3	9	42.8
	4+	5	23.8
	Total	21	100
Treatment types*+	Surgery	21	100
	Chemotherapy	15	71.4
	Radiation therapy	11	52.4
	Hormone therapy	10	47.6
	Other treatments	3	14.3

^* Some level of missing data.

⁺ Proportions representative of total for each treatment type.

2.3. Data collection

The focus groups were conducted at the CanRevive office or the authors' research institute, and the participant who opted for interview was interviewed at their home. The interview guide, based on our previous work into self‐management with Anglo‐Australian cancer patients,29 was applied flexibly to explore new concepts that emerged throughout the focus group or interview. Bilingual research assistants conducted the interviews in the participant's preferred language, specifically Cantonese (n = 14) and Mandarin (n = 10).

2.4. Data analysis

A qualified translator with credentials from the National Accreditation Authority for Translators and Interpreters (NAATI) transcribed all data verbatim into English, to enable analysis to be conducted by the research team. All participants were assigned a pseudonym to maintain their anonymity.

Thematic analysis was then independently undertaken by two members of the research team (JL and MG). The data were analyzed using the thematic analysis method proposed by Braun and Clarke (2006),30 specifically with an experiential (i.e., focus on participants' thoughts, feelings, and actions as reflected through the language they use to represent reality) and inductive (i.e., data driven or bottom‐up) orientation.31 Data analysis commenced with immersion in the data through reading and re‐reading transcripts to ensure familiarity with the data, leading to the generation of codes as meaningful labels to reflect the data that is pertinent to addressing the research question.31 After the codes were generated, meetings were conducted between JL and MG to compare identified codes, during which discrepancies were discussed and resolved. Potential thematic labels were then extracted and refined through examining initial data coding, checking of thematic labels within the data set, and discussion between JL and MG. Once all relevant data was assigned to tentative themes, discussions were held between JL and MG to finalize theme titles and develop thematic definitions.

3. RESULTS

Five themes were drawn from the data, namely, (i) information needs and seeking, (ii) communication with healthcare professionals, language barriers, and preferences, (iii) psychological impact of diagnosis, (iv) challenges, and (v) social support and coping. This manuscript focuses on the themes relating to information needs and communication, and the remaining themes have been reported elsewhere.

3.1. Information needs and seeking

Information seeking emerged as a strong theme, where participants expressed a need for information about cancer and treatment options. Notably, participants reported that the information they received from healthcare professionals was insufficient, and consequently, they sought additional content from other sources.

3.1.1. Varying and conflicting information from health care providers

Participants were generally eager for information but were uncertain regarding which questions to ask their doctor, largely due to a lack of understanding about medical concepts (e.g., prognosis, diagnosis, and stage/grade). Participants desired having their information needs met through open and clear communication with doctors: “Explain to me clearly before the treatment. Tell me what kind of treatment methods there are … Tell me the advantages and disadvantages of each one, so that I may understand them clearly” (Shu).

Several participants disclosed restricted communication that was often influenced by the perception that doctors had limited time. Participants reported receiving limited information from their doctors pertaining to cancer, treatment, and post‐treatment care: “He won't explain to you in detail … Some do not explain to you. Some explain only half. So, you get a smattering of knowledge” (Chen). However, some participants expressed satisfaction with the quality of the information provided by their doctor, as Ning stated: “After he finished talking, he wrote them down on a piece of paper as well. I still have that piece of paper. He wrote every step down. With chemotherapy, he explained one item after another.”

Participants also reported that they sometimes received conflicting information from different health care providers: “You said the doctor says that you can eat anything. That is just the western way. My GP even told me not to eat legumes” (Meiying). There were discrepancies between what participants understood from discussions with their doctors and other sources of information (e.g., written information and peers), which resulted in uncertainty: “I didn't know how to resolve it. I went to ask the doctor. The doctor said, ‘didn't you have chemotherapy and radiation treatment?’ He said those were to kill the cancer cells. But it was written in a lot of articles, right? Cancer cells cannot be killed, right?” (Shu).

3.1.2. Seeking information from other sources

Participants described their peers as providing information on how to manage breast cancer and evaluate treatment options. However, the mixed messages they received from peers regarding treatment options led to uncertainty and anxiety, particularly when the peer‐provided information was incongruent with their doctors' recommendations. For example: “But the chemo‐doctor told me to take vitamin B only after the chemotherapy finished. Some other people were already taking vitamin B during the chemotherapy” (Meiying).

Participants also sought information from printed and online sources. Their experiences with seeking information from the internet were mixed. On one hand, the internet was perceived as a good source of information about treatment side‐effects and after‐care, as exemplified by Sarah who stated: “Research can tell us whether this is the lingering side effect of the operation or is it a condition that happens to everyone who has had breast cancer … I was always searching the internet for an answer.”

Notably, the quality of internet information was viewed as less reliable than advice from health care professionals and cancer support organizations, for example: “I also went on the internet to search for information, but sometimes the information on the internet were not accurate. The information from CanRevive and Cancer Council are more reliable” (Chen). This indicates that Chinese women are mindful of the need to obtain high quality, accurate information and consider the suitability of the information source.

3.2. Communication with health care professionals, language barriers, and preferences

Issues relating to communication in health care settings emerged as the second major theme, highlighting issues with treatment decision‐making, preference for culturally congruent care and information, and quality of interpretation services.

3.2.1. Issues surrounding treatment decision‐making

Participants reported varying degrees of engagement in treatment decision‐making. Some participants recounted working collaboratively with their doctor and were able to assert their preferences, for example: “Doctor asked me to have chemotherapy, but I declined” (Nuo). However, many participants reported negative experiences regarding decision‐making, often resulting in confusion regarding treatment options. For example, Lan commented: “He asked if you'd agree to have chemotherapy … He said, ‘if you don't go for chemotherapy, I think you are very stupid, stupid.’ But he said, ‘I suggest you do it.’ … I was confused. I did whatever he told me to. I don't know.”

This example highlights how, even though the interaction may be presented as a choice, participants felt unable to make an informed decision. Other participants reported treatment decision‐making was made solely by the doctor, for example: “then he just cut … all decided by the doctor. The way he talked was not a discussion. It was his decision” (Shu).

3.2.2. Preference for culturally congruent care and information

Participants expressed a strong preference for health care professionals who spoke their native language: “It just happened that one of my three doctors are Chinese … He talked to me in Cantonese and I could tell him all my complaints. It was a happy thing to have such a person there. … He was so much easier to talk to” (Jia). Most frequently, however, oncology staff were unable to communicate in Mandarin or Cantonese, and consequently, participants relied on their Chinese general practitioners (GPs) for clarification. However, participants were unsure of the GP's breast cancer knowledge. “A GP is a General Practitioner, not a breast cancer specialist … In regard to treatment methods, the GP might not have special understanding” (Biyu).

The participants in the current study recognized the need for psychological intervention to assist them with their mood and negative thinking. They desired such services to be available in Chinese so that the women could directly engage with the practitioner: “I want to have one who can speak Chinese. You know, it would be easier for us to communicate in Chinese, especially when it's something to do with psychology, relaxation those things. Simple English is okay, but when it comes to harder English, requesting a Chinese speaking one would be much better” (Chun).

There was also a strong preference for information in Chinese, and participants reported frequently accessing internet sites from Chinese‐based organizations or had family in China send information. Accessing written information in their native language, free of medical jargon, was perceived as vital in helping them understand their illness, the treatment options available, and ongoing management of treatment side‐effects. This preference was strongly expressed with one participant describing how resources provided by the Cancer Council in English remained unread while she “finished reading the Chinese ones quickly because after all, it was in our own language. After reading the explanations, we understood more about our illness” (Chen). For some participants, there was a preference for having information available in both Chinese and English (in its original context) as this was perceived to be beneficial in aiding their understanding.

3.2.3. Interpreter services/language barriers discourage engagement

Participants disclosed difficulties with interpreter services and expressed a dire need for reliable and accurate services. Some participants were unaware of the service and consequently relied upon family to translate. Participants also shared the difficulties in scheduling interpreters for their appointment times and having interpreters who were unable to stay for complete appointments. For example, Ai reflected: “I was having an operation and the translator said, ‘Time's up, I have to go’. Looking at the clock and said, ‘next time. I need to go to the next one.’ Wow, what about me? … I still had questions I needed you to ask the doctors.”

Participants disclosed concerns about the accuracy and completeness of translations, reporting that interpreters sometimes omitted information, resulting in feelings of uncertainty and confusion. For example, Chen recounted: “I said, ‘sorry, how come you didn't interpret the few sentences the doctor had said just now?’ As a result, knowing that I understood, [the interpreter] stopped. The doctor talked to me directly instead … If a part was missing, that might become negligence.”

Another participant recounted that the interpreters were suitable for use for medical discussions, but that translation was problematic for emotional content. She reflected: “The interpreter was quite capable … But sometimes they interpreted not the things you wanted to say … All the medical side of things, they were very smart. But what you wanted to say in your heart, sometimes they did not say the correct things that you wanted to say in your heart. So, the second time, I didn't want one” (Jun). Consequently, issues faced by participants who relied upon interpreter services impacted upon their ability to engage with oncologists.

4. DISCUSSION

This qualitative study examined the experience of breast cancer for Chinese‐Australians, with a focus on information needs and communication with health care professionals. The findings highlighted significant gaps in information provision, a variety of information seeking strategies, and a strong preference for information in Chinese. Furthermore, the influence of limited information and restricted communication emerged as important issues regarding treatment decision‐making.

Numerous sources of information were used by participants, notably, health care professionals, support organizations, peers, the internet, and written sources. Unlike previous studies of Chinese‐Australian women with breast cancer,8 the participants did not openly express that existing information resources in Australia contributed to a sense of isolation and frustration. However, most acknowledged obtaining information from China, which suggests that current resources do not adequately address the information needs of the Chinese‐Australian community. Although seeking information from China may address an immediate need, this approach is limited as sourced information may not accurately represent options for treatment and support available in Australia.

Even though questions in the interview schedule did not explicitly relate to treatment decision‐making, this emerged as an important issue. Although some participants recounted positive experiences, the dominant view was one of uncertainty and feeling disempowered, as participants perceived their doctors telling them what treatments to undertake rather than engaging in a collaborative discussion of options. Interestingly, qualitative work conducted in China by Fu et al.32 also identified treatment decision‐making as an important element of the breast cancer experience. There are similarities between the current study and the work of Fu et al., particularly in relation to women feeling a lack of knowledge about treatment options. However, the core difference between the two studies is that the women in China framed their decision‐making in terms of trusting the doctors, whereas the current study suggests women felt excluded and disrespected. Additionally, work from the United States and the UK suggests that Chinese patients with cancer often depend on their doctors to make medical decisions,9, 33, 34 however they may assert themselves if they perceive the proposed treatment as being too risky.33 Notably, the participants in the current study expressed dissatisfaction with their limited knowledge and involvement, indicating they may not have been entirely comfortable relying on their doctor as the decision‐maker. Further exploration of treatment decision‐making for Chinese women with breast cancer, including examining incongruence between women's desired level of involvement and actual involvement in treatment planning, is warranted.

Our participants expressed a strong desire for culturally congruent care with health care professionals who spoke their native language. Consistent with the international literature,35, 36 communication barriers were a significant issue for the participants that influenced their perception of their care and contributed to a sense of uncertainty. A review examining cultural differences in medical communication concluded that minority patients are less verbally expressive and engage in less effective communication in medical consultations in comparison to Caucasian patients.37 The current study supports this conclusion with participants indicating difficulty expressing emotional concerns and knowing what questions to ask to obtain desired information.

Importantly, culturally congruent care may enhance shared decision‐making. Suurmond and Seeleman38 concluded that shared decision‐making is impeded when patients and clinicians have differing linguistic backgrounds and contrasting views of illness and role expectations. The participants in the current study indicated a preference for engaging with Chinese health care professionals (surgeons, oncologists, GPs, and psychologists), believing that such interactions are easier and enable superior communication. Research that compares involvement in treatment decision‐making and outcomes (both physical and psychological) for migrant cancer patients who engage with linguistically similar and dissimilar staff may provide valuable insights and help identify ways that limitations can be mitigated in culturally incongruent care relationships.

The problems with interpreter services identified in the current study are noteworthy. Consistent with other literature,27, 39 participants expressed concerns about the quality of interpretation, specifically issues with accuracy, omission, and communication of emotional messages. Availability of interpreters and the impact of appointment scheduling were also identified, highlighting that there are logistic as well as quality barriers to engaging with such services. Consequently, several participants engaged with doctors without the use of interpreters, contributing to reduced communication and increased unmet information needs.

The dissatisfaction relating to treatment decision‐making highlights the need to address barriers to engaging in this crucial element of patient care. Decision aids may enhance engagement as they can facilitate shared decision‐making and enhance adherence for culturally and linguistically diverse patients.40 Although several breast cancer decision aids exist, such tools may not be suitable for use with Chinese migrants, and therefore, evaluation of existing tools and the potential development of culturally appropriate aids is recommended.

The finding that Chinese migrant women use international information about their illness highlights the need for local resource development. Additional general information resources designed for specific cultural groups within Australia would be beneficial in reducing information seeking from international sources, as such information is unlikely to be directly applicable to the Australian health care system. Furthermore, support for culturally specific services and organizations is required, as participants clearly benefitted from the information provided through CanRevive and the other women who attended this service.

Ongoing clinician training is also suggested as one way to ensure health care professionals remain cognizant of the unmet information needs of their cultural minority patients. Such education would ideally include not only cultural awareness training but also skills to recognize limitations in their communications with culturally diverse patients and how that may contribute to barriers to patient engagement.38, 41 Enhancing the quality of interpretation services should also be viewed as a priority for service refinement.

Although focus groups are highly suitable for collecting qualitative data, the content disclosed, the level of detail shared, and the ability of the researcher to follow up on individual issues may be limited by the presence of other participants. It is therefore suggested that future research employ an individual interview approach to capture a more nuanced insight into participants' information needs and communication preferences. Most participants were also recruited through CanRevive (n = 23), and therefore, the sample could be biased as it reflects women who have actively sought this organization's support in their breast cancer experience. Strategies for recruiting members of minority groups who are isolated within the community need to be considered to adequately represent varying perspectives of minority cancer patients. A further limitation is that data regarding the duration of years in Australia was not collected. Women who spent more time in Australia may be more acculturated and familiar with the Australian health care system, as well as more proficient in English. Therefore, it is unclear whether some of the challenges the women faced were due to having spent less time in Australia. The impact of participant demographics on their overall experience was not analyzed, which is a limitation. It is recommended that future research enquire into the potential influence that an individual's sociodemographic context may have on their experience and utilization of coping behaviors.

Chinese‐Australian women with breast cancer face many challenges relating to obtaining appropriate information, communicating with health care professionals, and engaging in treatment decision‐making. There is an urgent need for culturally sensitive information resources and treatment decision aids to address such challenges. Enhancement of communication between patients, health care professionals, and interpreters would also be beneficial. Communication skills training programs with an emphasis on cultural competency would be able to assist health care professionals in being able to communicate more effectively with Chinese migrants.

DATA AVAILABILITY STATEMENT

Availability of data that support the findings of this study can be negotiated directly with the corresponding author.

CONFLICT OF INTEREST

The authors have no conflicts of interest to declare.

AUTHOR CONTRIBUTIONS

All authors had full access to the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Conceptualization, JL and AG. Methodology, JL and AG. Investigation, JL and MG. Formal Analysis, JL and MG. Resources, JL and MG. Writing – Original Draft, JL, MG, VW, AG. Writing – Review & Editing, JL, MG, VW, AG. Visualization, JL, MG, VW, AG. Supervision, JL and AG. Project Administration, JL and AG. Funding Acquisition, JL and AG.

Levesque JV, Gerges M, Wu VS, Girgis A. Chinese‐Australian women with breast cancer call for culturally appropriate information and improved communication with health professionals. Cancer Reports. 2020;3:e1218. 10.1002/cnr2.1218