Community Member and Health Care Provider Perspectives on Communication With Chinese American Patients With Cancer: A Qualitative Study

PURPOSE:

Effective health care provider-patient discussions of cancer diagnoses and prognoses are essential to enhance health outcomes in oncology. Chinese Americans have been designated an underserved population in oncology by the National Institutes of Health. We explored the perspectives of Boston Chinese American community members and health care providers regarding communication preferences and decision making in oncology care.

METHODS:

In this inductive, qualitative study, we conducted virtual, semi-structured interviews with 21 health care providers with experience in caring for Chinese American patients with cancer and 25 older Boston Chinatown community members who self-identify as Chinese or Chinese American. Thematic analysis was performed.

Results:

Two major themes were identified. First, provider communication should incorporate a gentle but truthful approach, careful word choice, authority-led style, and professionalism. Second, the family plays a large role in medical and nonmedical settings, and a family-centered approach to communication should be used.

Conclusion:

Our study builds on and challenges current knowledge regarding oncologic communication with Chinese American patients. A focus on the improvement of provider-patient cancer communication for Chinese Americans will improve care quality and satisfaction among patients and clinicians alike and serve to decrease disparities in care.

INTRODUCTION

Asian Americans are the fastest growing ethnic minority group in the United States. Of the 20 million Asian Americans living in the United States in 2012, nearly 25% were of Chinese origin.¹ Although Asian Americans have lower cancer incidence than White Americans, those who are diagnosed with cancer experience higher mortality rates.² Asian Americans are the only racial group in the United States for whom cancer, rather than heart disease, is the leading cause of death.^3,4 On the basis of these disparities, the Chinese American ethnic group has been designated an underserved population by the National Institutes of Health.²

Although the etiology of disparities in cancer-related mortality among Asian Americans is multifactorial, provider-patient communication plays a major role.⁵ Chinese Americans have reported lower involvement in decision making and trust of providers around cancer communication relative to White Americans.⁵ An emphasis on cross-cultural communication between physicians and patients is crucial to improve cancer care outcomes for Chinese Americans, including function, pain control, emotional health, and health-related quality of life.^6-8 Effective patient-centered communication increases patient satisfaction and trust in medical care^9,10 and improves physicians' confidence and sense of personal accomplishment.^7,11 Communication affects patient outcomes directly and, more frequently, indirectly by influencing patients' understanding and adherence to treatment.^12,13 Provider-patient communication is complicated by the life-threatening nature of cancer, complexity of information provided, and highly emotional context of oncology.^14-18 These challenges are heightened in the cross-cultural context, where health care providers and patients have differing sociocultural backgrounds. Difficulties in communication and limited cultural competence can contribute to health disparities.^19,20

Boston is home to the fifth largest Chinese population in the United States.²¹ The Tufts Medical Center (TMC) is located in Boston's Chinatown and provides care for > 20,000 Chinese American patients annually. Unmet informational needs around cancer treatment and prognosis are the most frequently reported concerns among Chinese community members.²² The aim of this study is to gain a high-level understanding of oncologic communication preferences among Boston Chinese American community members and providers at TMC in an effort to identify areas for enhancing quality of care and reducing health disparities across the cancer care continuum. The objectives of this article are to (1) examine communication approaches around diagnosis and prognosis among oncologists and Chinese American community members and (2) understand who is involved in decision making around cancer care from the perspectives of the two groups.

METHODS

Study Design and Setting

This is a qualitative descriptive study using semi-structured, in-depth interviews conducted between May 2020 and January 2021 to understand the perspectives of providers and community members regarding oncologic communication preferences. The study was conducted at TMC, a 415-bed tertiary academic medical center in Boston's Chinatown, and its community.

Study Participants

To investigate cross-cultural oncologic communication preferences and solicit varying perspectives, participants included 21 multidisciplinary health care providers (ie, physicians, nurses, nutritionists, case managers, and social workers) and 25 Boston Chinatown community members who self-identify as Chinese or Chinese American. Eligible providers were English-speaking and had at least one year of experience in caring for Chinese American patients with cancer. They were selected via purposive sampling with the goal of saturating themes around information needs and were recruited via e-mail. Community members were recruited in collaboration with the Greater Boston Chinese Golden Age Center (GBCGAC) through purposive and snowball sampling using flyers, announcements during community center meetings, and direct phone calls with the objective of meeting thematic saturation around information needs. The GBCGAC is a nonprofit organization whose mission is to promote the welfare of Boston's Asian older adults. We recruited active GBCGAC community members. No specific eligibility criteria were used, but all GBCGAC community members were age > 60 years; fluent in Cantonese, Mandarin, or Toisanese/Taishanese; and self-identified as Chinese or Chinese American.

Data Collection

We developed and iteratively refined a semi-structured interview guide, composed of 10 open-ended questions and related probes to understand participants' experiences and viewpoints regarding cancer communication (Data Supplement, online only). The guide was reviewed and piloted by a research committee made up of physicians self-identifying as Chinese American and familiar with Chinese American culture and GBCGAC community collaborators. The same interview guide was used for both groups.

Each participant was interviewed once for approximately 30 minutes (range: 15-60 minutes). Provider interviews were conducted via Zoom video in English by a female physician/coinvestigator (C.L.R.) with training and experience in qualitative research. The community member interview guide was forward translated into traditional Chinese and back translated to ensure accuracy. Community member interviews were administered by a female GBCGAC community interpreter (S.H.), who was trained in qualitative interview methods and was observed by a female research assistant (E.E.). The community member interviews were conducted in three Chinese dialects (Cantonese, Toisanese/Taishanese, and Mandarin) via Zoom audio. Some participants (eg, providers at TMC) were known to the research team because they shared the same workplace. Interviewers were trained to reduce bias by building rapport with all participants and maintaining neutrality and confidentiality. They started each interview by sharing the purpose of the study and potential risks, obtaining consent, and using a standardized interview guide with specific probes. All interviews were audio-recorded and supported by real-time note-taking. Professional transcription and translation services were used to transcribe provider audio recordings verbatim in English and community member audio recordings into traditional Chinese, followed by translation into English. Transcripts were then back translated by an independent native speaker to ensure accuracy. Interviews were conducted until data saturation was separately reached for each group, denoting that new themes were no longer emerging.²³ All transcripts were deidentified by the research team. Transcripts were not reviewed by participants. All findings were reviewed by Chinese American stakeholders as a means of member checking to strengthen the rigor and reliability of findings.

Data Analysis

In-depth thematic content analysis^24,25 was used to evaluate transcripts, and themes were derived directly from the data. Separate codebooks were developed for each study group using both deductive (defined from the interview guide) and inductive (iteratively refined throughout the interview and analysis process) methods. Transcripts were systematically analyzed using a codebook, consisting of parent and child codes, in Dedoose analytic software.²⁶ Multiple coders (C.L.R. and E.E.) reviewed a portion of the transcripts in each group to ensure inter-rater reliability. When disagreement in code application occurred, coders discussed discrepancies and came to an agreement or added a new code to better categorize the content. Once agreement was consistently reached on numerous transcripts, single coding was conducted. Another round of double-coding was conducted at the end of the analysis process to sustain rigor. All transcripts were reassessed to identify the presence of any new or discrepant codes developed and identified during the single and double coding analysis process. After the coding process was completed, the final codes were combined into primary themes that were then contextualized into topics. In this article, we present the common themes that were noted in each respondent group while also highlighting some divergent responses.

Ethics

This study received exempt status from the Tufts Health Sciences Institutional Review Board. Study participants provided verbal consent before participation.

RESULTS

Respondent Characteristics

The majority of the 21 providers were female and completed graduate or medical school (Table 1). Providers had worked with the Boston Chinese American patient population for an average of 16 years and had a mean age of 48 years. The majority of the 25 community members were female, had completed middle school education or less, and knew someone with a cancer diagnosis. The average age of community participants was 73 years (Table 1). The analysis highlighted findings related to two major themes: (1) provider communication approach and (2) individuals involved in decision making. Within each theme, we present convergent and divergent perspectives among the two respondent groups.

TABLE 1.

Participant Characteristics

Theme 1: Provider Communication Approach

Subtheme: gentle and positive.

Half of the respondents in both groups recommended discussing cancer diagnoses gently. This entailed that the providers took more time, allowed patients to process information and ask questions, avoided blunt or aggressive language, and refrained from pressuring the patient to make medical decisions.

“Take the time to break it to them gently, explain everything thoroughly, let it sink in. Give some comfort, options and help decide what to do next.” (Provider)

Both groups recommended that providers use positive language and display optimism. The majority of community members also expected providers to comfort and console the patient, be empathetic, and avoid increasing the patient's emotional or spiritual burden.

“Let them slowly absorb the truth…It is essential to give the patient confidence and raise his spirits.” (Community member)

Subtheme: word choice.

The majority of providers noted that Chinese American patients and their families often prefer to avoid the word cancer. Depending on the translation, cancer may imply a death sentence. Although providers often suggested using the word cancer during the first visit, they encouraged the use of alternative words such as tumor, nonbenign mass, or while you are not feeling your best thereafter. Word choice was not mentioned by community members.

“I tell the patient that you have this lesion, it's non-benign, it's malignant, but not the word cancer. The family is okay with using this terminology, but not the word cancer.” (Provider)

Subtheme: direct versus indirect.

The majority of community members encouraged providers to be straightforward about the diagnosis and treatment, thus preferring a direct communication approach.

“There is no need to be roundabout. These are facts. Just talk about it directly.” (Community member)

Unlike their preference in the medical setting, nearly all community members reported that talking about cancer in the community is taboo and deliberately avoided to protect those with cancer. If cancer discussions are required outside of the medical setting, indirect or euphemistic language was preferred.

“We want to be happy together. We don't talk about diseases, we talk about pleasant things.” (Community member)

“Cancer is a taboo which terrifies people. Cancer is the last thing people want to talk about.” (Community member)

The majority of providers encouraged tactful or euphemistic strategies for discussions in both the medical and community settings, thus consistently preferring an indirect communication approach. They recommended asking questions that are more general and depersonalized rather than directly talking about the patient's specific cancer diagnosis and care preferences (eg, asking the patient what their family member would do in the case of a cancer diagnosis or what the patient would advise that family member to do).

“Drawing from personal experience, starting with an example and getting the patient to comment on that example may be an effective way to communicate the problem. People are often willing to share their experiences when you open with an example, rather than asking directly.” (Provider)

“In the Chinese culture there's this belief that if you talk about cancer or death, it will happen. If you avoid talking about death, it's not going to happen. The same is for cancer. It's a superstition in a way.” (Provider)

A few providers reported that the diagnosis could potentially be delivered in a more direct way to ensure clarity, but a more euphemistic approach could be taken to discuss treatment as a coping mechanism for stress.

Subtheme: authority-led.

Members of both groups noted that Chinese Americans prefer authority-led communication involving physicians advising on the best solution rather than leave decision making up to the patient and family. Clear and concise words, presenting the information in different ways, and using teach-back methods were mentioned to ensure understanding.

“Some patients say, ‘Just tell me what to do’ or, ‘I'll do whatever you say to do’ and give the clinician full control. I'll still say the pros and the cons, but then I will give a recommendation.” (Provider)

“My doctor was skillful…I followed his instructions, step by step. He told me what and when and how. It helped a lot.” (Community member)

Theme 2: Individuals Involved in Decision Making

Subtheme: family-centered care.

Nearly all respondents in both groups emphasized the role of the family as part of the care team in discussing diagnosis, prognosis, and treatment plans for Chinese American patients with cancer. Respondents believed that care should be family-centered in that providers should build relationships with the family and the patient. English-speaking and younger family members were noted to be a great resource to help bridge the cultural gap; however, providers should be cautious to avoid overburdening family members with communication responsibilities. Providers also noted that family members may at times support the patient because of obligation rather than choice (eg, because of filial duties or to avoid bad karma).

“Sociologically, they don't see the patient as the individual…Culturally, it is the whole family acting as a unit and not as an individual.” (Provider)

“It is better to inform with my family present. The family should know how to treat and deal with the disease.” (Community member)

The majority of providers and nearly a third of community members noted the preference for family members to function as the connection to and mouthpiece of the patient, often helping to filter and distill information in an understandable way. Community members emphasized a preference for sharing the diagnosis with the family first, so family members can facilitate the discussion with the patient. The majority of providers noted that family members may ask the physician not to disclose the cancer diagnosis to the patient at all in hopes of protecting the patient emotionally. Because of informed consent requirements, providers find it challenging and distressing when family members want to withhold the diagnosis, especially when aggressive cancer-directed therapies are considered. In such circumstances, providers recommend approaching the patient directly to determine their preference for disclosure of the cancer diagnosis.

“At times, the children want to be the ones to receive and filter information for the patient. That's fine if that's the patient's wishes too. Always check first with the patient: ‘Would you prefer information to be shared with your family and to have them help you with medical decision making?’ A lot of times that is the preference. Be aware of those kind of family dynamics.” (Provider)

“It's better that the doctors talk to the family first. Let his family members go talk to him and tell him slowly so that it is easier for him to accept. If you tell him that he has cancer out of the blue, he might not be able to accept it and could crash.” (Community member)

DISCUSSION

Our findings indicate that providers and community members diverged regarding their preferred communication approach; community members were proponents of a direct yet gentle approach with a careful choice of words, whereas providers advocated for a more indirect, depersonalized approach. Both groups emphasized Chinese American patients' preference for authority-led communication with clear treatment recommendations and the importance of family-centered communication and care.

Our findings regarding differing communication approaches among the two respondent groups are in contrast to existing evidence that supports the use of indirect language and euphemisms with Chinese Americans when discussing serious health topics.^27-32 Community members' preference for direct communication in this population may be related to their characteristics (eg, differing levels of acculturation or education) and the fact that they were not oncology patients, and they had access to health education and outreach through the GBCGAC. For example, a recent study exploring advanced cancer care planning discussions with Chinese patients in Boston found that indirect communication was preferred. However, their patient population had a higher level of education and socioeconomic status than our respondents, and many of them were Chinese residents traveling to the United States solely for their oncologic care.³⁰ Further studies with Chinese American patients with cancer are needed before applying these findings in the clinical setting. Limited research on communication of cancer diagnoses with Chinese American patients suggests that societal taboos, superstitions, and concern for bad luck influence communication preferences.³³

Authority-led decision making and a more assertive physician approach were preferred, which is consistent with previous studies.^34,35 This is in contrast to Western medicine's patient-centered approach that places value on patient autonomy and frequently incorporates the patient's preference when multiple treatment options are available.^35,36 However, a majority of research studies to date have been among Asian Americans as an aggregate.^27-31 Confirming this preference in future studies with Chinese American patients with cancer is warranted. The use of a gentle approach and alternative terms for cancer (eg, tumor or illness) by providers is consistent with recommendations in existing studies.^28,30,32 However, community members in our study might have been more comfortable with the word cancer because of frequent medical education sessions provided by GBCGAC and community outreach from TMC.

Evidence supports the importance of a family-centered communication and care approach.^3,37-41 Our study highlights that Chinese Americans want to be included in communication and care decisions, which diverges from the relatively common practice in China and among recent Chinese American immigrants of not disclosing a cancer or serious illness diagnosis to the patient because of family preference.^42,43 This lack of disclosure may be related to expected family roles, including filial piety, where adult children are expected to protect and ensure that their parents are comfortable at the end of life.^31,44 The complexities of family roles and dynamics and their influence on cancer communication preferences need to be explored directly with patients with cancer and their families to provide guidance to providers on how to effectively navigate these conversations.

This study is unique in that it provides a direct comparison of community member and provider perspectives and focuses on an underserved and understudied population. It also builds on several communication components, including informational needs and mechanisms of communication, that have previously been identified as key components in health communication frameworks.^45-47 As with any study, some limitations are inherent. This study was restricted to providers and community members from a single medical center and surrounding neighborhood that is not representative of the entire Chinese American population and their medical providers. Boston is an urban community, and community participants might have increased exposure and access to medical care. The majority of community member participants were Cantonese-speaking, and findings may not be transferable to those who speak other Chinese dialects. Finally, this study focused on the viewpoints of healthy older community-dwelling Chinese Americans, rather than patients with cancer or their family members, to gain baseline knowledge before pursuing direct research with more vulnerable cancer patient populations.

In conclusion, our study challenges existing evidence regarding oncologic communication between providers and Chinese American patients. Community members' preference for a direct communication approach around cancer diagnosis has major implications on clinical oncologic care for this population. Further research involving patients themselves is needed to confirm our findings and make necessary changes in clinical practice. In addition, our findings bring to light the complex communication dynamics inherent in Chinese American families. A focus on provider-patient cancer communication for Chinese Americans will improve oncology care quality and satisfaction among patients and clinicians alike and will serve to decrease disparities in care.

We strived to ensure that the views and perspectives of Chinese American participants were accurately and appropriately represented in our research. Our research group, research committee, and community collaborators represented a diverse group of individuals. To ensure accurate representation of the voices of the Chinese community and enhance the trustworthiness of the data, Chinese individuals with understanding of the native language, values, and perspectives of Chinese Americans were included in all aspects of the study. In addition, most members of the research team had significant experience in caring for Chinese American patients, thus motivating us to conduct this project to improve patient care.

AUTHOR CONTRIBUTIONS

Conception and design: Courtney Robbel, Emma Ernst, Tamara Vesel

Administrative support: Courtney Robbel, Emma Ernst, Tamara Vesel

Provision of study materials or patients: Courtney Robbel, Yang He, Tamara Vesel

Collection and assembly of data: Courtney Robbel, Emma Ernst, Tamara Vesel

Data analysis and interpretation: All authors

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Community Member and Health Care Provider Perspectives on Communication with Chinese American Patients with Cancer: A Qualitative Study

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