Chinese American Pain Experience Project (CAPE): Perceptions, expectations and attitudes on pain management among Chinese American postoperative patients

Abstract

Introduction

Chinese Americans are one of the fastest growing racial and ethnic groups and represent the largest subgroup of the Asian American population in the US and in New York City (NYC) where they number 573,528 in 2021. Despite their numbers, current pain perceptions, expectations, and attitudes of Chinese Americans remains poorly understood, especially as related to postoperative pain.

Objective

A better understanding of pain experience among Chinese American patients is needed to inform strategies on improving pain management satisfaction.

Methods

A total of 27 Chinese American postoperative patients from a NYC health system were recruited for face-to-face surveys and interviews with a trained bilingual and bicultural Community Health Worker. Questions from the Survey on Disparities in Quality of Healthcare and Kleinman’s Explanatory Model of Illness were integrated into the survey and topic guide. Topics of discussion included satisfaction with healthcare and pain management during hospital stay and health beliefs and practices.

Results

More than half of participants experienced language challenges that made it difficult to communicate with healthcare staff. In general, high levels of satisfaction with pain management was reported; however, participants reported feeling less comfortable asking healthcare teams questions. Common themes across interviews included: 1) pain was an expected outcome of the procedure and was thus perceived as tolerable; 2) the wish to not be a burden to others; 3) concerns about side effects of pain medications; and 4) a cultural and language mismatch between healthcare teams and patients on words being used to elicit pain and discomfort.

Conclusion

Our project findings can inform pain management strategies and tools to serve the Chinese American patient population.

Introduction

Postoperative pain is experienced by more than 80% of surgical patients with a significant proportion reporting inadequate pain relief [1]. Barriers to pain relief may occur at the system, provider, and patient level [2]. Patient level considerations may include attitudes, language, and culture [2]. Recent postoperative pain management guidelines from The American Pain Society, with input from the American Society of Anesthesiologists, recommend the ‘development of a plan of care tailored to the individual and the surgical procedure involved [1].’ However, current pain perceptions, expectations, and attitudes in many racial/ethnic communities, including Chinese Americans, remain poorly understood, especially as related to postoperative pain.

By 2055, Asian Americans will be the largest immigrant group in the United States.³ Chinese Americans make up the largest subgroup of Asian Americans and are the largest Asian subgroup in New York City (NYC), numbering 573,528 from 2021 census data [4]. In 2021, 52.6% of the total Chinese Americans in NYC are limited English proficient (LEP) who speak English less than very well [4]. Moreover, Chinese Americans are among the oldest Asian American subgroups, with a median age of 43 [5], suggesting greater need to understand pain management needs.

Studies examining the pain experiences of Asian Americans have reported conflicting results related to sensitivity to pain [6, 7] and the relationship with level of acculturation [8, 9]. Furthermore, analyses have found that Asian Americans’ perceptions of pain may be related to a multitude of factors including pain ‘normalization’ [10, 11] among those who consider pain a natural phenomenon, which if acknowledged, conveys weakness [10, 12–15], and others whose spiritual or religious beliefs teach that pain is normal [10, 16, 17]. Among Chinese Americans, the perceptions, expectations, and attitudes of pain may reflect elements of cultural stoicism, religion, social status, language, fear of addiction and developing a tolerance to pain medication, and side effects of pain medication [18, 19]. Furthermore, some patients may fear that continuous need for medication may indicate disease severity [18]. Differences in level of acculturation may also influence attitudes toward pain among Chinese Americans. For example, a qualitative study from the Greater Bay Area Cancer Registry found that Chinese American immigrant breast cancer survivors were less inclined than non-immigrant Chinese breast cancer survivors, to express their needs or challenge physicians when their needs were not met which may be due in part to embedded cultural values of respecting authority figures [20]. This finding suggests that Chinese American immigrant patients who are less acculturated may likewise be less likely to express their pain to healthcare provider post operation.

The current study aimed to conduct a mixed methods study to examine and better understand factors that influence the postoperative pain perception and management among Chinese American patients, inclusive of LEP communities, with the goal of informing strategies to increase patient-centered engagement and satisfaction with pain management within this NYC health system.

Methods

Study Design

A mixed-methods approach, including surveys and semi-structured interviews, was used. A scoping review of the published peer-reviewed literature was completed to inform the interview topic guide.

Participants and Recruitment

The sample population of the project was the Chinese American patient community at a large NYC health system. A list of postoperative patients who met the following criteria was generated from electronic health records, patients who: 1) had undergone a procedure within the past 5 months; 2) self-identified as Chinese or Chinese American; 3) was at least 21 years of age; and 4) resided in the New York metropolitan area. From this list of eligible participants, stratified random sampling by gender and age was used Given the priority population of Chinese American patients for this study, by widening the timeframe for a procedure within the past 5 months, this allowed us to create a larger eligible pool to conduct this stratified random sampling to ensure a broad representation. Selected participants were sent invitation letters, which included project details. Two weeks after letters were sent, two trained bilingual Community Health Workers (CHWs) made follow-up calls to patients to provide more study information and to invite them to participate.

Verbal consent was obtained during the initial phone call to patients. After receiving verbal consent, participants completed a short phone survey about their demographic information and scheduled a convenient time to complete a one-hour face-to-face quantitative survey and semi-structured interview.

In-person semi-structured interviews were conducted in patients’ preferred language (English, Cantonese, or Mandarin) and at a setting convenient to participants. The interviews were led by a trained bilingual CHW and contained both quantitative and qualitative questions guided by a topic guide that addressed patients’ satisfaction with their care and pain management during their hospital stay, including pain perceptions, attitudes and behaviors related to pain management, and challenges and facilitators to pain management. Interview recruitment and interviews were conducted until data saturation was reached (i.e., no new themes and recurring patterns captured). All patients were provided a project incentive.

Measures

Quantitative Survey

Demographic information collected included patient’s age, gender, location, nativity, language spoken, education, and employment. Questions were derived from the Community Health Resources and Needs Assessment (CHRNA) [22, 23], which has been used to assess the health needs of different Asian American communities in NYC. Additional questions were adopted from the Survey on Disparities in Quality of Healthcare (SDQH) [24]. The SDQH was created to survey racial and ethnic populations on their healthcare experience, including access to quality care and their relationship and communication with healthcare staff, with the goal to assess racial and ethnic health disparities.

Qualitative Interviews

The qualitative interview topic guide was informed by Kleinman’s Explanatory Model of Illness [25] to elicit patients’ perception, attitudes, and behaviors around patients’ pain experience. This framework, used to understand health beliefs in different cultures, has informed primary care physicians on patients’ needs and has shaped physicians’ approaches to treatment. Several questions on patient satisfaction were also included, using the Wong-Baker Faces Pain Scale [26] in depicting the patient’s pain experience. Patients were asked to assess the scale, both visually and linguistically, and to elaborate on how they interpret the scale to express their pain level. The interview topic guide was piloted with bilingual CHW staff and Chinese-speaking community members and refined based on the pilot findings. Brief field notes were recorded immediately following each interview.

Data Analysis

Quantitative Data

All survey data was analyzed using the SPSS, version 25 [27]. Quantitative data collected assessed the participants’ characteristics and satisfaction with patient care and pain management during their hospital stay. Descriptive analyses to describe the overall qualitative study participant sample were conducted. Mean scores and breakdown of responses were evaluated and compare by age and gender groups within the sample.

Qualitative Data

All interviews were audio-recorded with permission and transcribed. Twenty-one interviews were conducted in Chinese and were translated and transcribed directly into English by a transcription company. All translated transcripts were then reviewed by our bilingual CHW to check for both textual and cultural accuracy. Four study team members were trained to code and analyze qualitative data on ATLAS.ti, version 8. An initial codebook was created based upon the topic guide. Applying an iterative process, the study team reviewed transcripts independently and then met to discuss and refine the codebook, resulting in 82 codes from 25 categories. Team members met weekly to resolve any discrepancies and to discuss common themes. The constant comparison method was utilized to identify themes in patient’s beliefs, attitudes, and behavior surrounding pain and pain management.

Results

Quantitative Findings

Two hundred introduction letters were sent to eligible patients from which 27 patients were recruited for the interviews. Descriptive statistics of the sample population are shown in Table 1. The sample were about evenly divided between elderly (65 and over years old) and younger (21–64 years old) patients, as were gender groups (with 51.9% who were female and 48.1% who were male). More than half of the sample population reported having limited English proficiency (individuals who reported speaking English less than “very well” [28]). The overall group reported a higher educational attainment, with 40.7% completing 4 years of college or more. More than 90% of all participants stated that they agreed or strongly agreed that they were satisfied with the overall pain management they received after the procedure. Additional questions pertaining to patient care satisfaction, pain management satisfaction and patient care experience also tended to show high overall satisfaction (see Table 2).

Table 1.

Patient Sociodemographic Characteristics (N = 27)

Variable	Frequency (n [%])
Age
21–64	14 (51.9)
65+	13 (48.1)
Gender
Female	14 (51.9)
Male	13 (48.1)
Nativity
Foreign-born	20 (74.1)
U.S.-born	4 (14.8)
Missing	3 (11.1)
Speak a language other than English at home
Yes	23 (85.2)
No	1 (3.7)
Missing	3 (11.1)
English language proficiency
Very well	7 (25.9)
Well	3 (11.1)
Not well	7 (25.9)
Not at all	7 (25.9)
Missing	3 (11.1)
Education
Grades 1 through 11 (Elementary to some high school)	7 (25.9)
High school graduate (Grade 12/GED) to some college (1–3 years)	6 (22.2)
College 4 years or more (College graduate)	11 (40.7)
Missing	3 (11.1)

Table 2.

Patient Pain Experience Results (N=27)

Patient Pain Management Satisfaction	Frequency [n[%])
I was satisfied by the overall quality of pain management I received after the procedure.
Strongly Disagree	1 (3.7)
Disagree	0 (0)
Neutral	1 (3.7)
Agree	20 (74.1)
Strongly Agree	5 (18.5)
I was satisfied by how often the healthcare staff asked whether I was experiencing any pain or discomfort.
Strongly Disagree	0 (0)
Disagree	0 (0)
Neutral	2 (8.0)
Agree	19 (76.0)
Strongly Agree	4 (16.0)
I felt confidence and trust towards the healthcare staff to treat me for my pain.
Strongly Disagree	0 (0)
Disagree	0 (0)
Neutral	0 (0)
Agree	19 (70.4)
Strongly Agree	8 (29.6)
The healthcare staff followed up on how I was doing after I was given the treatment.
Strongly Disagree	0 (0)
Disagree	0 (0)
Neutral	1 (3.8)
Agree	21 (80.8)
Strongly Agree	4 (15.4)
The healthcare staff involved me in decisions about my pain care as much as I wanted.
Strongly Disagree	0 (0)
Disagree	1 (4.0)
Neutral	2 (8.0)
Agree	18 (72.0)
Strongly Agree	4 (16.0)
The treatment options for my pain were explained to me thoroughly by the healthcare staff.
Strongly Disagree	1 (4.0)
Disagree	0 (0)
Neutral	1 (4.0)
Agree	20 (80.0)
Strongly Agree	3 (12.0)
Patient Care Experience	Frequency [n[%])
How often did you have questions about your care or treatment that you wanted to discuss, but did not?
Never	16 (61.5)
Rarely	8 (30.8)
Sometimes	1 (3.7)
Often	1 (3.7)
Always	0 (0)
How often were your questions or concerns answered?
Never	0 (0)
Rarely	0 (0)
Sometimes	2 (7.7)
Often	13 (50.0)
Always	11 (42.3)
How often did you feel comfortable asking the healthcare staff questions?
Never	0 (0)
Rarely	2 (7.7)
Sometimes	5 (19.2)
Often	10 (38.5)
Always	9 (34.6)
How often did the healthcare staff take the time to explain things to you?
Never	1 (3.8)
Rarely	1 (3.8)
Sometimes	2 (7.7)
Often	16 (61.5)
Always	6 (23.1)
Patient Care Satisfaction	Frequency [n[%])
My preferences and wishes were respected by the healthcare staff.
Never	1 (3.7)
Rarely	0 (0)
Sometimes	2 (7.4)
Often	18 (66.7)
Always	6 (22.2)
The healthcare staff were responsive to me and my health concerns.
Never	1 (3.8)
Rarely	0 (0)
Sometimes	0 (0)
Often	21 (77.8)
Always	4 (14.8)
The healthcare staff understood what my concerns were.
Never	1 (3.7)
Rarely	1 (3.7)
Sometimes	2 (7.4)
Often	18 (66.7)
Always	5 (18.5)
The healthcare staff listened to everything I had to say.
Never	0 (0)
Rarely	1 (3.7)
Sometimes	1 (3.7)
Often	19 (70.4)
Always	6 (22.2)
The healthcare staff treated me with a great deal of respect and dignity.
Never	0 (0)
Rarely	0 (0)
Sometimes	1 (3.7)
Often	18 (66.7)
Always	8 (29.6)
The healthcare staff understood my background and values.
Never	0 (0)
Rarely	3 (11.5)
Sometimes	4 (15.4)
Often	17 (65.4)
Always	2 (7.7)

Twenty-one of the 27 patients (77.8%) requested that their interview be conducted in Chinese (Cantonese or Mandarin). Survey results showed that 17 out of the 27 patients (63%) experienced a language access challenge that made it difficult to communicate or understand healthcare staff. Among those who experienced a language access challenge, 15 patients (88.2%) requested interpreting services and, on average, patients who requested an interpreter had a lower understanding of healthcare information when communicating with healthcare staff compared to those who did not report requesting for interpreting services.

Descriptive analysis of questions pertaining to patient care satisfaction, pain management satisfaction and patient care by gender (see Fig. 1, 2 & 3) suggest minimal differences between groups, except for level of comfort asking healthcare staff questions. Further subgroup analysis of the quantitative data was limited due to the small sample size; and no comparisons achieved statistical significance. However, data indicate male patients were significantly less likely to agree that they felt comfortable asking healthcare staff questions, compared to female participants. Specifically, 58.4% of male patients and 85.7% of female patients reported often or always feeling comfortable asking healthcare staff questions. Despite level of comfort, over 61.5% of individuals surveyed stated that they never had questions pertaining to their care or treatment that they wanted to discuss but did not, and 30.8% felt that they rarely experienced this. In particular, 71.4% of female patients never experienced this, compared to 50% of male patients.

Fig. 1.

Patient Care Satisfaction by Gender

Fig. 2.

Patient Pain Management Satisfaction by Gender

Fig. 3.

Patient Care Experience by Gender

Qualitative Findings

From the qualitative analysis, 4 major themes emerged: 1) Pain is tolerable, including subthemes: a) the fear that talking about pain will bring about bad outcomes and b) Pain was an expected outcome of the procedure and thus is perceived as normal; c) Comfort with asking questions and minimizing pain 2) The wish to not be a burden to others; 3) Concerns about side effects of pain medications and a preference for alternative or traditional treatments; and 4) A cultural and language mismatch between words being used to elicit pain and discomfort.

Theme 1: Pain is tolerable

The fear that talking about bad things (e.g. pain) will bring about bad outcomes

One of the main qualitative findings was the fear that pain is a symptom of a more serious illness, and that talking about it or acknowledging it will bring about a bad outcome. “I think people don’t want to admit if they have pain. They’re more like, ‘close your eyes and it will go away’ where you take an aspirin and [it’ll] go away…I think people are afraid of what the answer might be, you know, what the condition might be and I think they are trying to avoid that as well” (ID 5B). In addition, there is an unwillingness to talk about ‘bad things’ for fear that speaking about such things would turn them into reality, bringing more burden to themselves and others. Another patient noted “For the pain not so severe, you just take it as long as you can sleep and eat. Don’t worry about it. Just wait for its disappearance…If you go to see the doctor, they would say, ‘You’ve got a tumor!’ I ask, “Is it benign or malignant?’ Then the doctor would say, ‘Oh, it’s malignant.’ Then it’s malignant” (ID 18A).

Pain was an expected outcome of the procedure and thus was perceived as normal

Many of the patients expressed an expectation that they would experience some pain which was perceived as normal and tolerable. For example, one participant stated “I don’t bother to tell if I can hold it…I think of course it hurts when there’s any wound. It’s impossible to feel no pain at all…. I think it’s normal to have a little pain… and not necessary to bother others” (ID 2C). If, however, the pain was unbearable, persistent, or impacted their ability to function normally, participants were more likely to attend to their pain by requesting medical assistance or taking pain medication. For example, one patient stated, “for me, the most uncomfortable part of the pain is that it impacts my sleep. I can bear with the pain if it’s slight when I’m awake, but it’s terrible when I try to sleep. So I try to take as less pain killer as I can and once it impacts my sleep, I’d take the pain killer” (ID 6E). Another patient responded that “sometimes the pain will go away itself. But you need to see how much it is. If it’s a huge pain, you have to see the doctor immediately. If it’s normal, sometimes we really need some patience” (ID 14D).

Comfort with asking questions and minimizing pain

Some male patients expressed feeling uncomfortable asking healthcare staff questions due to the language challenge. These findings were similarly reflected in the quantitative data. For example, one male patient explained, “I don’t understand a lot. The doctor is busy. How could he have the time to answer your questions?” (ID 7B). Another male participant recalled, “if I ask and the nurse tells me, I’m afraid if I can understand. She tells you these medical terms. I can’t understand them at all” (ID 11A). Another male patient shared, “I don’t ask as I don’t know how to do it in English” (ID 16A). Additionally, many participants referenced traditional/cultural gender norms on pain expression. “Because as Chinese, our parents taught us since young that if you are a man, you have to act like one and never to speak of pain easily” (ID 1E). Another patient stated, “if it hurts, men don’t say it to others. Women say more” (ID 27C).

Theme 2: The wish to not be a burden to the healthcare teams or caregivers/family

Many patients expressed that they did not want to be a burden to others, including to their family members, caregivers or the healthcare providers. “I think it’s normal and not necessary to bother others” (ID 2C). Thus, they avoided sharing about their pain experience. One patient, who had seen this occur before, observed, “If they are not telling … their healthcare team that they have pain, it might be because, [they are thinking,] ‘Oh, I don’t want them to feel bad’ Or, “I don’t want to cause them any trouble’” (ID 26B). Another patient similarly stated “You don’t want to bother [healthcare providers, family & friends]. I think people don’t want to admit if they have a problem … you know they don’t want to complain” (ID 5B). “I don’t want to burden people if it’s not a big deal. Yes, if I felt like I had big pain, then I would share it with my husband or with my friends or my family. If it’s just something that comes and goes every day, as we get older, more than when I was a younger person, — [it wouldn’t be] important to share because I don’t want to burden other people” (ID 27C). This patient also shared that there was a threshold of pain that when exceeded, pain disclosure may be more appropriate, but only to people with whom she had a close relationship. She also noted that pain was inevitable as one aged, going back to the theme that pain was a normal condition.

Theme 3: Concerns about side effects of pain medications and a preference for alternative or traditional treatments

The patients overall expressed hesitation with using medications to alleviate or manage pain. Several shared fears of the potential for side effects as a reason for not requesting medications. For example, one participant said, “Because we, as Chinese Americans, believe that every medicine has its side effect, it’s better not to use [painkillers] if it is not absolutely necessary” (ID 2C). Side effects were commonly mentioned when speaking about taking medication for pain. Another participant mentioned, “Killing the pain is the priority. But you cannot take it for long. You know every medication has its side effect” (ID 7B).

Some patients expressed a preference in the use of traditional medicine, such as acupuncture, massage, and exercise as a complement to the pain medication. “If you offer something like Chinese treatment like acupuncture medication that will make the patients give a much better experience” (ID 25D). Another patient expressed, “But I think the most effective to have managed part of my lower back pain is exercise and a physical massage” (ID 3E). Patients acknowledged that having an alternative option other than pain medication was oftentimes preferred or considered even better. “I also detect that among many Chinese people, that they’d rather go natural with herbal supplements, herbal teas, herbal soups, rather than depending on Western chemicals. Or what they see as chemicals, which they might consider more like poison” (ID 26B). Moreover, some expressed skepticism about pain medication or biomedical medicine in general.

Theme 4: Pain vs. discomfort

When asked about their experiences after their operations, patients who were interviewed in Chinese often used specific Chinese words that loosely translate to discomfort/feeling uncomfortable and uneasy to describe how they felt, in addition to the Chinese word for pain. The English translations to discomfort, however, does not capture the nuances of the words. Variations of this feeling, listed and translated, were used during the interviews, and can be found in Table 3.

Table 3.

Chinese Phrases Reflecting Discomfort and Uneasiness

Chinese Phrase	English Translation
不舒服	Discomfort/uncomfortable
好难过	Uneasiness resulting in a down mood
不好受	Not easy to bear/uncomfortable
很难受	Difficult to bear/uncomfortable

In reviewing our transcripts, in 76% (16 out of 21) of the interviews conducted in Chinese, the participants selected Chinese colloquial phrases and words describing discomfort (不舒服, 不好受, 很难受) or uneasiness (好难过) instead of pain (痛) when explaining postoperative experiences. This is compared to 17% (1 out of 6) of interviews conducted in English. Moreover, this occurred in 10 out of 11 surveys completed in Cantonese (91%) and 6 out of 10 in Mandarin (60%). In all cases, patients were asked to describe their experience in their own words.

The Chinese words associated with discomfort were more frequently used during Chinese interviews to describe feelings of pain from the postoperative experience that led to general feelings of physical or mental unease throughout the whole body. For example, one participant mentioned, “If I am in a lot of pain (痛), my whole body will be uncomfortable (不舒服)” (ID 5B). This pain experience is also often described as affecting their sleep, socialization, appetite, mobility, mood, and energy, which leads to a general state of the whole-body discomfort and unease where the Chinese word for discomfort is used. Another participant described an example of how pain impacts his body. “When I was sick, I’m very uncomfortable (很难受), I don’t want to speak, I don’t want to move” (ID 20C). This participant further described the experience as “After [the operation], I was a sick person. Everywhere was uncomfortable (不舒服), my entire body from head to toe, all my organs are uncomfortable (不好受)” (ID 20C).

Additionally, the Chinese word for pain (痛) was often used to refer to mostly specific locations (e.g. back, neck, stomach). “Sometimes my back hurts, sometimes my head or stomach is in pain (痛), or other parts of the body” (ID 2C). However, the Chinese word for discomfort were used to describe both experiences in specific locations and general overall feeling. One patient described discomfort in their stomach “Not my appetite, my appetite is fine. It’s my stomach – the food I eat, it doesn’t digest, I feel bloated, causing here to be sore, very uncomfortable (不舒服)” (ID 5B). Another patient described discomfort as a general feeling “Very uncomfortable (不舒服), it’s indescribable discomfort (不舒服) …anyways nausea, vomiting, anyways very very uncomfortable (不舒服到不得了)” (ID 11A).

The use of the Chinese words for pain and discomfort can both be used to describe experiences of varying levels of severity, from negligible to warranting immediate medical attention. A patient described that “it depends on what type the pain (痛) it is, right? If it is very painful (痛), of course I would take medicines, but if it is not very painful (痛), I’d bear with it and not take medicine” (ID 5B). Similarly, discomfort was often used to describe varying severity from a mild uneasy feeling to an intense experience requiring immediate attention. One patient recounted “When the catheter was inserted there was a little discomfort (不舒服), but at the time it really was not a big deal” (ID 11A). A family member of another patient recalled “When he [patient] said he was very uncomfortable (不舒服), my daughter drove him immediately to the emergency room, and they immediately started rescuing him” (ID 16A).

When asked to review the Wong-Baker FACES rating scale [26], some felt that the expressions on the faces did not capture the nuance between pain and discomfort nor did it match the written level of pain, particularly in its association between the severest pain and the corresponding face which depicted crying. One patient responded that it was difficult to pick a number/face from the pain scale (ID 23C) and another stated that “Not everyone cries. Some men don’t cry for dignity. They may only open mouth and make noises” (ID 4A). Another patient, who was interviewed in English, stated “As you progress to the really hurting part, it doesn’t convey pain to me. It looks very sad. So, I think that’s kind of misrepresenting” (ID 9D). This participant further described his aunt’s postoperative experience:

“I had a debate literally with my aunt…she had to go to her doctor…there’s a nuance of pain versus discomfort…I’ll ask her, “Are you in pain?” and she’ll say no, but then she’ll say, it’s tight and it’s kind of like pulling on her…the doctor would always ask the same question ‘What’s the pain level? Does it hurt?’ And she would always say, ‘No, it doesn’t hurt’ but she would be uncomfortable and very uncomfortable. It would be helpful to separate pain versus discomfort…definitely ask what hurts cause it’s the most acute, most pressing thing, but if they say ‘No,’ I think it’s very important to ask –is there any discomfort or is it uncomfortable? And then, I think that opens more things to say”.

Discussion

Overall, the results of the quantitative findings suggest high levels of satisfaction with pain management and minimal differences between males and females, except for feeling comfortable asking healthcare team members questions, with males reportedly less comfortable. Qualitative analysis, however, supports findings from previous research, which suggest that certain aspects of cultural and social norms may impact patients’ postoperative pain management experience within this NYC health system. Common themes include: 1) pain was an expected outcome of the procedure and was thus perceived as tolerable; 2) the desire to not be a burden to others; 3) concerns about side effects of pain medications; and 4) a cultural and language mismatch between words being used to elicit pain and discomfort.

Several of these qualitative themes are rooted in Chinese cultural norms and values. For example, Theme 1 is related to the Chinese cultural belief that talking about bad things (e.g. death) will make it happen [29]. In this case, talking about one’s pain or acknowledging the pain will bring about more complications or poor outcomes. As several participants expressed, if the pain was tolerable they chose not to bring it up to their family, caregivers or healthcare teams. This aligns with cultural norms related to maintaining harmony [30] and not wanted to be a burden on others. If, however, the pain was unbearable, persistent, or impacted their ability to function normally, participants were more likely to attend to their pain by requesting medical assistance or taking pain medication. Additionally, the belief of traditional gender roles may result in men minimizing their pain experience [31]. These findings are similar to previously published research, which has shown that Chinese Americans were less likely than other patients to request pain relief [32,33] and that within Chinese culture tolerating or enduring pain is considered a positive characteristic [34]. Related to maintaining harmony and not burdening others, Duke & Petersen, 2015 found that a challenge to providing effective pain management for Chinese American patients included the fear of being a bother to the healthcare providers and family members, worry about the side effects of medications, being dependent on medication, and difficulty with English communication [35].

Language and creating a shared language to maximize patient-centered care is essential. Specifically, the words chosen and understanding cultural nuances in terminology when discussing pain management, such as discomfort and uncomfortable, may more fully capture the spectrum of how patients’ are perceiving their pain experiences; this warrants further exploration. Currently, terms reflecting discomfort (不舒服, 不好受, 很难受) and unease (好难过) are not included in the Wong-Baker FACES pain rating scale nor in the validated Chinese translation of the Wong-Baker FACES scale. This may be an important addition when working with Chinese American immigrant populations with limited English proficiency. Additional modifications to the Wong-Baker FACES scale may include the removal of the crying face to represent the severest pain. Several of the patients interpreted this as sad rather than as highly painful. This has also been captured in other studies in which researchers have noted that patients of diverse cultural backgrounds may find a disconnect in the facial expressions (e.g., tears, the furrowing of the forehead, the elevation of eyebrows, or mouth opening) as a representation of the spectrum of what defines pain [36].

Understanding these cultural nuances and spectrum of experiences may help providers and healthcare teams communicate more effectively with patients. Additionally, supplemental questions on the impact of pain on activity, sleep, mood, and stress could be incorporated into this scale [37]. For example, the Defense and Veterans Pain Rating Scale uses descriptive text to describe severity of pain and how it impacts activities, sleep, mood, and stress [38]. The Functional Pain Scale (FPS) similarly uses qualitative descriptive information about how the patient is functioning with pain along with a numerical ranking from 1 to 10 [39]. For example, ranking 7 to 8 on FACEs corresponding to an unhappy face would have a similar rating on FPS with the pain score described as “unmanageable” or “intense” and a patient “can’t concentrate” and is “unable to sleep.” Moreover, this scale defines ranking of 3 as “uncomfortable,” which is a word that the majority of our participants used in describing their pain experience. A more comprehensive scale, which provides a greater context for pain experience, may provide a better pain assessment option especially for this population.

Additionally, because healthcare staff and patients may have different perceptions, attitudes, and approaches to expressing and managing pain, trainings aimed at raising awareness of patients’ pain experience and the role of cultural values and beliefs may help improve understanding and communication between provider and patient, thereby improving pain assessment. This may be accomplished through trainings that incorporate patient- and culture-centered approaches, social determinants and dimensions of pain, prevention, and provider empathy [40]. Additionally, continuing education for health professionals on the role of language access and the quality of healthcare received [41], may also improve pain assessment. Trainings that provide tools and build skills to address low levels of health literacy (e.g. think aloud and teach back models [42]) may also serve as effective methods to improve pain relief. Previous studies of LEP Chinese American patients have found that when patients are provided in-language providers/services or high-quality translation, they experience fewer barriers to care, are more likely to ask questions related to their care, increase patient’s health literacy and to experience higher satisfaction with their care [43, 44]. These methods may provide the most direct way of assuring a common language to maximize patient-centered care. Moreover, as we found in our study, high-quality translations will require a transcreation approach as opposed to straight-line translation. Transcreation is the process of adapting content from one language to another using cultural knowledge to maintain the intent, tone and content of the message [45–47]. Using a transcreation approach will allow for the integration of cultural meaning and relevancy to improve comprehension and understanding of complex phenomenon like pain experience.

Several limitations are noted. First, data was collected only from patients at one NYC health system. Generalizability may be limited as the study participants may not be representative of the overall Chinese American population in NYC or outside of NYC. Second, we did not have information related to the operations from which the patients were recovering. It is possible that differences in procedures accounted for the differences noted in pain experience. Also, quantitative analysis was limited due to the small sample size. However, we applied a mixed methods approach to complement this data with qualitative interviews to further contextual findings. Future studies should seek to additionally explore these questions with larger sample sizes. Finally, it is possible that the patients who participated in the interviews may have a different pain profile than those who declined to participate; thus, the experience of those interviewed may not be representative of the broader patient population.

Conclusion

This project suggests that when assessing the pain experienced by Chinese American patients’, cultural and linguistic factors need to be addressed in assessing their level of pain. Findings from our study report on the cultural norms, values and language that are operationalized by the Chinese American patients in the study to talk about their pain experience. In particular, it may be important to ask Chinese American postoperative patients about discomfort (不舒服) as well as pain (痛) to obtain an accurate picture of their experience. These findings highlight mismatched opportunities for provider-patient communication on postoperative pain experience. For example, the Wong-Baker FACES pain rating scale may be revised to include an assessment of discomfort as well as pain. Our study findings can help better inform meaningful and culture-centered strategies, tools, and language to better represent and serve the LEP Chinese American patient population.

More research is needed to examine pain experiences in Chinese American populations as well as across different Asian American subgroups to better explicate the role of cultural values and norms unique to and relevant across ethnic subgroups. There is a need for large representative data sets to measure pain experience among Asian Americans to be able to disaggregate data by ethnic subgroup, generational status, and other factors. This study can inform the work to identify a reliable tool for self-reporting pain for these underserved populations. Furthermore, gaining a deeper understanding of the different pain measurement scales specifically for Asian Americans would facilitate inclusive and better pain management within this population.