Introduction
Pain is one of the most feared symptoms across cultures for people diagnosed with cancer (Brant, Reference Brant, Yarbro, Wujcik and Gobel2014; Paice et al., Reference Paice, Bell, Kalso and Soyannwo2010; Ruzicka, Reference Ruzicka, Gates and Fink2001) and it affects half of all cancer patients (Van Den Beuken-Van Everdingen et al., Reference Van Den Beuken-Van Everdingen, De Rijke and Kessels2007). Inadequate cancer pain management may contribute to physical, psychological, social, and spiritual distress (Brant, Reference Brant, Yarbro, Wujcik and Gobel2014; Ruseel & Tandon, Reference Ruseel, Tandon, Fawcett and Mcqueen2011) and have a negative impact on cancer patients’ emotional wellbeing (Ruseel & Tandon, Reference Ruseel, Tandon, Fawcett and Mcqueen2011; Yates et al., Reference Yates, Edwards and Nash2002).
Culture is a factor that can significantly influence cancer patients’ pain experience, coping behaviors, and adherence to a recommended pain management plan (Al-Atiyyat, Reference Al-Atiyyat2009; Lasch, Reference Lasch2000). Providing culturally appropriate care is an essential element of effective cancer pain management for patients from culturally and linguistically diverse backgrounds (Lasch et al., Reference Lasch, Wilkes and Montuori2000).
People from Chinese backgrounds are dispersed around the globe and form one of the largest cultural and linguistically diverse communities in their host country (Australian Bureau of Statistics, 2012).The incidence of oversea-born Chinese cancer patients has sharply increased in the past two decades (Federation of Ethnic Communities’ Councils of Australia, 2010). Prevalence of severe pain and/or undertreated pain were identified in Chinese cancer patients living in China and Western countries, which substantially affected their quality of life (Deng et al., Reference Deng, Fu and Zhao2012; Dhingra et al., Reference Dhingra, Lam and Homel2011; Edrington et al., Reference Edrington, Miaskowski and Dodd2007; Liang et al., Reference Liang, Wu and Chao2015; Liu et al., Reference Liu, Zhang and Na2013).
Chinese culture may significantly affect cancer patients’ communication, ability to cope with the cancer diagnosis and symptoms, and adherence to recommended care plans (Dayer-Berenson, Reference Dayer-Berenson and Dayer-Berenson2014a; Yin et al., Reference Yin, Bai and Liu2007). The pain perceptions and experiences of cancer patients from a Chinese background may be shaped by their cultural beliefs (Chen et al., Reference Chen, Miaskowski, Dodd and Pantilat2008). The Chinese cultural beliefs can potentially influence people's interpretation and interaction to their pain treatment (Chung et al., Reference Chung, Wong and Yang2000) and become contributing barriers for them to report their pain and use prescribed analgesics to achieve adequate pain control (Chen et al., Reference Chen, Miaskowski, Dodd and Pantilat2008).
Immigrant Chinese cancer patients may experience additional barriers to their pain management. Research with different groups of immigrants suggests that Chinese immigrant cancer patients had special needs for their healthcare compared with other groups (Butow et al., Reference Butow, Sze and Dugal-Beri2010). Because of difficulties in communicating with non-Chinese-speaking health professionals and navigating new healthcare systems, Chinese immigrant cancer patients often felt culturally isolated when they were approaching health professionals for their cancer care needs (Butow et al., Reference Butow, Sze and Dugal-Beri2010). They also perceived that Western medications differed from their traditional health practices and failed to meet their needs (Butow et al., Reference Butow, Sze and Dugal-Beri2010).
Improving health professionals’ understanding about health perspectives and needs of Chinese cancer patients is required to ensure the development of culturally appropriate pain management interventions. However, no literature review to date has provided information on how Chinese cancer patients perceive their pain management and what barriers might affect their decision making and adherence to the pain management plan.
Cancer pain management
Cancer pain is a multidimensional experience (Edrington et al., Reference Edrington, Miaskowski and Dodd2007; Oldenmenger et al., Reference Oldenmenger, Sillevis Smitt and Van Dooren2009; Peng et al., Reference Peng, Wu and Sun2006). Cancer pain management is a complex and ongoing care process that demands constant efforts by health professionals across hospitals and home care throughout the process of routine cancer pain screening, assessment of pain intensity and functional impairment, treatment, and follow-up (Dy et al., Reference Dy, Asch and Naeim2008).
Effective cancer pain management requires a coordinated multidisciplinary (Brant, Reference Brant, Yarbro, Wujcik and Gobel2014; Oldenmenger et al., Reference Oldenmenger, Sillevis Smitt and Van Dooren2009) and biopsychosocial approach (Van Den Beuken-Van Everdingen et al., Reference Van Den Beuken-Van Everdingen, Hochstenbach and Joosten2016). This approach encompasses comprehensive pain assessment and appropriate pharmacological and nonpharmacological interventions to meet individual's physical, psychological, social, and spiritual needs (Brant, Reference Brant, Yarbro, Wujcik and Gobel2014; Paice et al., Reference Paice, Bell, Kalso and Soyannwo2010).
Patients’ self-report of pain is the most important step in cancer pain assessment; and health professionals, especially nurses, play primary roles in ongoing pain assessment (Brant, Reference Brant, Yarbro, Wujcik and Gobel2014). Inadequate knowledge and skills of cancer pain assessment were often found in both the patients and the health professionals and led to poor pain management outcomes (Oldenmenger et al., Reference Oldenmenger, Sillevis Smitt and Van Dooren2009).
Oral analgesics are one of the most effective pharmacological interventions for cancer pain (World Health Organization, 2015). About 30 years ago, the World Health Organization (WHO) launched a three-step cancer pain ladder to promote and guide usage of oral nonopioids and opioids in managing weak, mild, and severe cancer pain. It is recommended that cancer pain can be effectively controlled if the right does of oral analgesics are administrated around-the-clock based on pain assessment and are used in conjunction with adjuvants to control the fear and anxiety of patients (World Health Organization, 2015) .
Nonpharmacological interventions are an essential, but often overlooked component of pain management for cancer patients (Brant, Reference Brant, Yarbro, Wujcik and Gobel2014). Nonpharmacological interventions, such as cognitive-behavior therapy, musical therapy, herbal medicines, or superficial heating or cooling, have been reported as effective methods in cancer pain reduction (Brant, Reference Brant, Yarbro, Wujcik and Gobel2014; Yarbro et al., Reference Yarbro, Wujcik and Gobel2011). Nonpharmacological interventions might not be able to change the underlying pathology or alter the perception or sensations of pain, but rather help in variety of ways to decrease patient responses to pain, enabling them to deal with the pain positively and proactively (Yarbro et al., Reference Yarbro, Wujcik and Gobel2011).
Despite the multitude of pain management guidelines and strategies, unrelieved cancer pain persists because of patient, family, health professional, and/or healthcare system related barriers (Brant, Reference Brant, Yarbro, Wujcik and Gobel2014; Oldenmenger et al., Reference Oldenmenger, Sillevis Smitt and Van Dooren2009; Van Den Beuken-Van Everdingen et al., Reference Van Den Beuken-Van Everdingen, De Rijke and Kessels2007). The poor outcomes of cancer pain management remain unchanged for decades though constantly efforts and attentions have addressed to this issue (Smith & Saiki, Reference Smith and Saiki2015; Van Den Beuken-Van Everdingen et al., Reference Van Den Beuken-Van Everdingen, Hochstenbach and Joosten2016).
The barriers affecting appropriate cancer pain management reported in the literature have been different (Jacobsen et al., Reference Jacobsen, Møldrup, Christrup and Sjøgren2009; Van Den Beuken-Van Everdingen et al., Reference Van Den Beuken-Van Everdingen, Hochstenbach and Joosten2016). Identifying and developing adequate interventions to overcome the barriers was the corner stone of effective cancer pain management (Van Den Beuken-Van Everdingen et al., Reference Van Den Beuken-Van Everdingen, Hochstenbach and Joosten2016).
Objectives
The purpose of this review is to explore current evidences describing the pain management experiences, beliefs, and needs of cancer patients from Chinese backgrounds. Integration of findings from international and Chinese literature has the potential to understand cultural influences and the barriers affecting cancer pain management in patients from a Chinese background and to inform the development of effective interventions for optimal pain management.
Design
A protocol was developed according to the Joanna Briggs Institution's (JBI) Systematic Review method (The Joanna Briggs Institute, 2015) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (Liberati et al., Reference Liberati, Altman and Tetzlaff2009) to guide the systematic review.
Inclusion criteria and exclusion criteria
Articles were eligible if they (1) were published in peer-reviewed English journals or the Chinese core journals between January 1990 and August 2015 and (2) provided empirical data describing pain management experiences reported by adult cancer patients from Chinese cultures, including Chinese immigrant cancer patients living in Western countries or Chinese cancer patients living in Hong Kong, Taiwan, and mainland China. For studies evaluating a novel intervention, baseline rather than follow-up data were included to describe experiences during usual care.
Articles were excluded if they did not provide any patient-reported data about pain management, such as studies that reported patients’ pain experiences only or studies solely used audit data.
Data sources
The initial search was undertaken via CINAHL and MEDLINE in July 2015 with the primary key words “Chinese,” “Chinese migrant,” “cancer patient,” “pain,” and “pain management” to identify relevant studies to expend key words and phrases for more in-depth search. Then a series of key terms/words were developed for the comprehensive search in August 2015 via CINAHL, MEDLINE, PsyINFO, Cochrane Library, and China Academic Journals (CNKI). The search terms/keywords and limits were modified according to the requirement of different English and Chinese databases.
The Chinese literature was mainly searched via the CNKI Full-Text Database, under subject of “Medicine and Public Health” and “Education and Social Science.” To maximize the search scope, the search was carried out in two rounds by using different Chinese words with the same meanings. For example, 癌, 癌症, and 肿瘤 have the same meaning of “cancer.” Both 病人 and 患者 refer to the patient or patients.
Examples of the search terms and limits used for the English and Chinese databases are summarized in Tables 1 and 2, respectively.
Table 1. Key search terms and limits used for English databases
Table 2. Key words used to search in China Academic Journal (CNKI) Full-Text Database
a The China Academic Journals Full-text Database collects articles published from 1994.
b Duplicates of articles published in Chinese that could be searched by both their Chinese title and their translated English title were excluded.
Study selection
The titles and abstracts of 10% of the returned articles were screened by two independent reviewers (English articles by XX and TL and Chinese articles by XX and AYW), with an inter-rater agreement of 100% achieved. The remaining articles were screened by one reviewer alone (XX).
Quality appraisal
The risk of bias within studies of the selected English and Chinese articles were assessed by two independent reviewers (as previously) using JBI levels of evidence (The Joanna Briggs Institute, 2014a) and critical appraisal tools (The Joanna Briggs Institute, 2014b). Quantitative studies were appraised using the JBI Critical Appraisal Checklist for Descriptive/Case Series Studies (The Joanna Briggs Institute, 2014b). The qualitative study was appraised using the JBI Qualitative Assessment and Review Instrument Critical Appraisal Checklist (The Joanna Briggs Institute, 2014b). Disagreement was resolved by consultation with the third reviewer.
Data extraction and synthesis
Data were extracted using an electronic pro forma on study aims, population, sample size, setting, study design, outcome measures, and main findings. Chinese data were extracted into the table and translated into English (XX). The translation was cross-checked by another reviewer (AYW).
Heterogeneity between study designs prevented a meta-analysis; thus, narrative methods as described by Popay (Arai et al., Reference Arai, Britten and Popay2007; Popay et al., Reference Popay, Roberts and Sowden2006) were used for data synthesis and analysis. The narrative synthesis focused on prevalence of cancer pain, type of cancer pain management, and pain management-related adherence behaviors, beliefs, needs, and experiences.
Results
Study characteristics
A total of 3,904 articles were retrieved from the searches, of which 23 reporting on 19 primary studies met the inclusion criteria and were selected for the review (Figure 1). The included studies (Table 3) predominately involved adult cancer inpatients (n = 6,008) and a smaller proportion of outpatients (n = 102) who were living in mainland China (n = 3,714 inpatients), Hong Kong (n = 86 inpatients), or Taiwan (n = 2,208 inpatients and 102 outpatients). Most studies included more men than women, although not all studies reported participants’ gender.
Fig. 1. Process and results of searching, screening, and selecting articles
Table 3. Overview of study characteristics
a The studies are listed in a chronological order.
b Four articles were written based on one study.
c Two articles were written based on one study.
All studies were conducted in urban hospitals. Most studies (n = 15) used an observational descriptive design (cross-sectional survey or case series).The other studies included two observational analytic studies, a pilot randomized controlled trial, and a qualitative study. No studies reported information on immigrant Chinese cancer patients’ pain management related perspectives and health needs.
Risk of bias within studies
Except for the qualitative study (level 3.0), most of the studies in this review were rated at levels of evidence between level 4.b and 4.c.Three interventional studies were rated at levels 3.e to 2.e based on their study design, but only baseline data at level 4.b were used for this review.
Fourteen studies adopted a convenience sampling technique. All studies used face-to-face surveys and/or interviews to collect their data. Of the 18 quantitative studies, 12 used validated tools and six used self-developed surveys to examine pain management–related beliefs and/or barriers. Most of the validated measures were originally established in Western populations and translated into Chinese; only one was psychometrically developed in the Chinese population (Chen et al., Reference Chen, Mai and Wang2007). The levels of evidence and methodical appraisal results are summarized in supplementary tables (ST1, ST2, and ST3).
Prevalence of pain, type of pain management, and adherence behaviors
Suboptimal analgesics use, delays in receiving pain treatment, and/or poor adherence to prescribed analgesics contributed the burden of participants’ unrelieved pain. The majority of participants across the studies (83.5% inpatients and 100% outpatients) reported experiencing pain with a duration ranging from a few days to several months.
Across studies, pharmacological rather than nonpharmacological strategies were the main cancer pain management strategy used. Three studies reported using the WHO three-step ladder to guide the prescription of analgesics (Chen et al., Reference Chen, Mai and Wang2007; Hu et al., Reference Hu, Qiu and Mei2010; Lu et al., Reference Lu, Guan and Ma2006). Six studies specifically investigated the barriers of using opioids (Lai et al., Reference Lai, Keefe and Sun2002, Reference Lai, Guo and Keefe2004; Liang et al., Reference Liang, Yates, Edwards and Tsay2008a, Reference Liang, Yates, Edwards and Tsay2008b, Reference Liang, Yates, Edwards and Tsay2012, Reference Liang, Chen and Tsay2013a, Reference Liang, Tung and Wu2013b, Reference Liang, Wu and Chao2015; Pang et al., Reference Pang, Tang and Song2013), whereas the remaining 13 studies explored participants’ perspectives on using analgesics.
Only two studies noted that participants used a combination of analgesics (codeine or morphine) and nonsteroidal anti-inflammatory drugs (Lin, Reference Lin2000; Song et al., Reference Song, Wu and Liu2014). Another two studies described participants using traditional Chinese medicine (e.g., acupuncture) or physiotherapy alone and/or in combination with analgesics for pain control (Chen et al., Reference Chen, Mai and Wang2007; Huang, Reference Huang, Zh and Peng2009).
The following poor analgesic-adhering behaviors were reported by the participants: (1) failing to take regular analgesics as prescribed (Lai et al., Reference Lai, Keefe and Sun2002, Reference Lai, Guo and Keefe2004; Song et al., Reference Song, Wu and Liu2014; Tse et al., Reference Tse, Wong and Ng2012; Wills & Wootton, Reference Wills and Wootton1999; Xia, Reference Xia2015); (2) only taking analgesics when pain occurred rather than around-the-clock analgesic regimen (Huang, Reference Huang, Zh and Peng2009; Lin, Reference Lin2000, Reference Lin2001; Song et al., Reference Song, Wu and Liu2014; Tse et al., Reference Tse, Wong and Ng2012) or when the pain became unbearable (Lin et al., Reference Lin, Yang and Lai2013; Tse et al., Reference Tse, Wong and Ng2012); and/or (3) titrating their analgesic doses without medical guidance (Tse et al., Reference Tse, Wong and Ng2012; Xia, Reference Xia2015).
Identified barriers
The barriers prevented the participants to report their cancer pain, receive pain treatment, adhere to the prescribed analgesics, and achieve optimal pain control were identified as following:
Patient-related barriers
The patient-related barriers mostly arose from the participants’ beliefs regarding cancer pain and/or analgesics, including pain related beliefs and analgesic-related misconceptions.
Pain-related beliefs
Participants’ conceptualization of their pain experiences significantly influenced their pain management behaviors (Lai et al., Reference Lai, Keefe and Sun2002) and decision-making (Lai et al., Reference Lai, Guo and Keefe2004; Liang et al., Reference Liang, Tung and Wu2013b; Lin et al., Reference Lin, Yang and Lai2013; Wills & Wootton, Reference Wills and Wootton1999). “Fatalism” was identified as a major obstacle to preventing participants from using analgesics to relieve their cancer pain (Lin, Reference Lin2000, Reference Lin2001; Wills & Wootton, Reference Wills and Wootton1999). Inpatients with higher fatalism scores considered pain as an inevitable experience of hospitalization, hesitated to use analgesics, and often endured pain for months (Lin, Reference Lin2000; Wills & Wootton, Reference Wills and Wootton1999).
Participants with a higher “desire to be good” score, as measured by the “Barriers Questionnaire,” were more reluctant to talk about their pain because they did not want to disturb their nurses and/or doctors (Lin, Reference Lin2000, Reference Lin2001; Wills & Wootton, Reference Wills and Wootton1999). In addition, many participants believed that pain was an indication of “disease progression” (Liang et al., Reference Liang, Yates, Edwards and Tsay2008a; Lin, Reference Lin2000, Reference Lin2001; Lin & Ward, Reference Lin and Ward1995; Tse et al., Reference Tse, Wong and Ng2012). This belief discouraged them from accepting pain treatment (Liang et al., Reference Liang, Yates, Edwards and Tsay2008b; Lin et al., Reference Lin, Yang and Lai2013), made them reluctant to report their pain to health professionals (Lin, Reference Lin2000, Reference Lin2001; Lin & Ward, Reference Lin and Ward1995; Tse et al., Reference Tse, Wong and Ng2012), and/or failed to adhere an around-the-clock analgesic regimen (Liang et al., Reference Liang, Yates, Edwards and Tsay2008a Reference Liang, Chen and Tsay2013a).
“Pain endurance belief” refers to “the belief that one should endure as much pain as possible” (Lai et al., Reference Lai, Keefe and Sun2002, p 416). “Pain control belief” is a belief “that one can control his/her pain” (Lai et al., Reference Lai, Keefe and Sun2002, p 416). The high scores of “pain endurance belief” and the lower scores of “pain control belief” were significant negative predictors of analgesic adherence (Lai et al., Reference Lai, Guo and Keefe2004; Liang et al., Reference Liang, Tung and Wu2013b).
In several studies, participants described the need to “be brave” (Chen et al., Reference Chen, Mai and Wang2007; Pang et al., Reference Pang, Tang and Song2013) and/or to “bear the pain” (Lin et al., Reference Lin, Yang and Lai2013). In fact, some participants did not realize that their pain could be relieved (Lin et al., Reference Lin, Yang and Lai2013; Lu et al., Reference Lu, Guan and Ma2006; Pang et al., Reference Pang, Tang and Song2013).
Analgesic-related misconceptions
Cancer patients with lower education levels (Chen et al., Reference Chen, Mai and Wang2007; Xia, Reference Xia2015) and older ages (Xia, Reference Xia2015) or misconceptions to analgesics had greater difficulty adhering to analgesics.
In the studies investigating participants’ perspectives on opioid use, participants commonly held “negative effect beliefs” (Lai et al., Reference Lai, Keefe and Sun2002, Reference Lai, Guo and Keefe2004; Liang et al., Reference Liang, Yates, Edwards and Tsay2008a, Reference Liang, Yates, Edwards and Tsay2008b, Reference Liang, Yates, Edwards and Tsay2012, Reference Liang, Chen and Tsay2013a. Reference Liang, Tung and Wu2013b, Reference Liang, Wu and Chao2015). The “negative effect belief” is “a belief that opioids have negative effects on the body” (Lai et al., Reference Lai, Keefe and Sun2002, p 416). Participants with a high opioid “negative effect belief” (r = −30, p < 0.01) were less likely to adhere to an around-the-clock analgesic regimen (Liang et al., Reference Liang, Yates, Edwards and Tsay2008a, Reference Liang, Tung and Wu2013b). Concerns about side effects and addictions were also reported as barriers of using opioids (Pang et al., Reference Pang, Tang and Song2013). In contrast, the patients’ belief that medications could be effective in treating pain (Lai et al., Reference Lai, Keefe and Sun2002) and high self-efficacy for administering opioids (Liang et al., Reference Liang, Yates, Edwards and Tsay2008a, Reference Liang, Yates, Edwards and Tsay2008b, Reference Liang, Yates, Edwards and Tsay2012) were indicators of high adherence to opioids for cancer pain treatment.
In the studies exploring participants’ perspective on analgesics in general, findings suggested that poor analgesic adherence was mainly linked to a disproportionate “fear of addiction” or “analgesic dependence” (Chen et al., Reference Chen, Mai and Wang2007; Huang, Reference Huang, Zh and Peng2009 ; Lin, Reference Lin2000, Reference Lin2001; Lin & Ward, Reference Lin and Ward1995; Lin et al., Reference Lin, Yang and Lai2013; Tse et al., Reference Tse, Wong and Ng2012; Wills & Wootton, Reference Wills and Wootton1999; Xia, Reference Xia2015) and “concerns about side effects” (Chen et al., Reference Chen, Mai and Wang2007; Huang, Reference Huang, Zh and Peng2009; Lin, Reference Lin2001; Lin et al., Reference Lin, Yang and Lai2013; Tang, Reference Tang2010; Tse et al., Reference Tse, Wong and Ng2012; Wills & Wootton, Reference Wills and Wootton1999; Xia, Reference Xia2015).
Family-related barriers
The participants in the qualitative study regarding cancer patients’ opioid-taking task and behaviors perceived their family as the “bridge” between themselves and their healthcare providers and considered family support the central to helping them cope with their pain and pain treatment (Liang et al., Reference Liang, Yates, Edwards and Tsay2008b). The family members’ perspectives to cancer pain and its management may have an impact on participants’ adherence to analgesics.
In a few studies that involved both patients and their families, some family members perceived pain as an indicator of “disease progression” and worried that taking analgesics to control the pain would mask warning signs of cancer progression (Lin, Reference Lin2000; Pang et al., Reference Pang, Tang and Song2013). Analgesic side effects and safety (Lin, Reference Lin2000, Reference Lin2001; Pang et al., Reference Pang, Tang and Song2013), addictions, and tolerance (Lin, Reference Lin2000) were also major concerns of family members.
Congruency between patients’ and families’ cancer pain management perceptions is essential for analgesic adherence (Lin, Reference Lin2000, Reference Lin2001).The perception of barriers among family caregivers was a significant negative predictor of patients’ accuracy and attitudes in using analgesics (p < 0.05) (Lin, Reference Lin2000) and a predictor of patients’ hesitation to take analgesics (p < 0.01) (Lin, Reference Lin2000).The noncongruent group of patients had significantly higher (p < 0.01 or p < 0.05) total barrier scores and subscores on “disease progression,” “religious fatalism,” and “tolerance” than those in the congruent group and were less likely to adhere to their pain treatment (Lin, Reference Lin2000).
Health professional-related barriers
The main health professional-related barriers reported by the participants were ineffective management of analgesic side effects (Huang, Reference Huang, Zh and Peng2009; Lin et al., Reference Lin, Yang and Lai2013) or delays in treating side effects (Chen et al., Reference Chen, Mai and Wang2007; Hu et al., Reference Hu, Qiu and Mei2010; Pang et al., Reference Pang, Tang and Song2013). Inefficient pain control also led to participant dissatisfaction with their pain management (Huang, Reference Huang, Zh and Peng2009; Lin et al., Reference Lin, Yang and Lai2013). Poor communication and/or a lack of information on pain treatment were barriers to optimal pain control (Liang et al., Reference Liang, Yates, Edwards and Tsay2008b).
Healthcare system-related barriers
Participants had difficulty accessing opioids after hours (Liang et al., Reference Liang, Yates, Edwards and Tsay2008b) and obtaining analgesics to manage unexpected pain (Pang et al., Reference Pang, Tang and Song2013). Participants were also dissatisfied with delays of their cancer pain treatment and/or the limited supply of analgesics that was not commensurate with the dosing regimen required to control their pain (Huang, Reference Huang, Zh and Peng2009; Lin & Ward, Reference Lin and Ward1995; Tang, Reference Tang2010; Tang et al., Reference Tang, Tang and Liu2010).
Participants with low incomes (Chen et al., Reference Chen, Mai and Wang2007; Xia, Reference Xia2015) and/or those without health insurance (Huang, Reference Huang, Zh and Peng2009; Liang et al., Reference Liang, Yates, Edwards and Tsay2008b; Lu et al., Reference Lu, Guan and Ma2006; Xia, Reference Xia2015) had even more limited access to analgesics because of concerns about affordability. Even participants with health insurance had limited access to analgesics and quality pain treatment because the amount of insurance funds contributed to pain treatment was extremely restricted (Song et al., Reference Song, Wu and Liu2014). Participants also worried that community hospitals might not be able to provide analgesics and appropriate treatment for their cancer pain (Hu et al., Reference Hu, Qiu and Mei2010).
Discussion
This systematic review revealed a range of patient-, family-, health professional-, and healthcare system-related barriers that contributed to the experience of unrelieved pain, delay in receiving pain treatment, and poor adherence to prescribed analgesics in Chinese cancer patients.
The patients’ pain beliefs such as “fatalism” and “desire to be good,” “pain endurance belief”, low “pain control beliefs” and “concerns about disease progression” are analogous with those reported in the Western literature (Oldenmenger et al., Reference Oldenmenger, Sillevis Smitt and Van Dooren2009). However, the culture influences that underpin these beliefs need to be addressed to help health professionals understand Chinese cancer patients’ pain management-related behaviors and needs.
Buddhism teaches that “pain is a power, unwanted but existent…” (Chen et al., Reference Chen, Miaskowski, Dodd and Pantilat2008, p 105).This perspective leads people to view pain as a “natural thing” that is an indicator of their body reacting to the cancer (Chen et al., Reference Chen, Miaskowski, Dodd and Pantilat2008, p 105; Im et al., Reference Im, Liu, Kim and Chee2008). Fatalism can extend beyond pain to the cancer itself (Chung et al., Reference Chung, Wong and Yang2000). Cancer pain is considered both a “fate” associated with misery and a reminder of life and that what patients can do when confronted with pain is to wait until death comes (Chung et al., Reference Chung, Wong and Yang2000).
The desire to be “a good patient” may stem from the influence of Confucianism. Confucianism encourages people to strive for a harmonious relationship with nature and others (Dayer-Berenson, Reference Dayer-Berenson and Dayer-Berenson2014b). Chinese patients’ desire to maintain harmonious relationships with others may lead to a reluctance to “bother” health professionals with their health problems (Dayer-Berenson, Reference Dayer-Berenson and Dayer-Berenson2014b; Tjuin et al., Reference Tjuin, See and Chien2007).
The “pain endurance belief” is also likely associated with the influence of Confucianism. Chinese people generally are not comfortable expressing feelings in front of others when they experience hardships. This stoicism is seen as important to winning others’ respect. Therefore, Chinese often perceive pain as a “trial” that tests their strength and that pain is part of the sensation of being human (Chen et al., Reference Chen, Miaskowski, Dodd and Pantilat2008). Although cultural beliefs of this kind may help with coping in some instances, they have the potential to generate feelings of helplessness and misery in Chinese cancer patients (Chung et al., Reference Chung, Wong and Yang2000). These patients tend to suffer in silence rather than seek help before their pain becomes severe (Chen et al., Reference Chen, Miaskowski, Dodd and Pantilat2008).
In addition, Chinese cancer patients perceived pain as an indicator of disease progression (Liang et al., Reference Liang, Yates, Edwards and Tsay2008a; Lin, Reference Lin2000, Reference Lin2001; Lin & Ward, Reference Lin and Ward1995; Tse et al., Reference Tse, Wong and Ng2012).They worried that if their pain was controlled, this could eventually prevent the warning signs of cancer from reoccurring or advancing (Chen et al., Reference Chen, Miaskowski, Dodd and Pantilat2008). This may also explain why Chinese cancer patients tended to suffer in pain instead to obtaining help.
The “negative effect belief” to opioids and “fear of addiction” among Chinese cancer patients are very likely due to a lack of cancer pain and treatment information (Lai et al., Reference Lai, Guo and Keefe2004; Lu et al., Reference Lu, Guan and Ma2006; Tse et al., Reference Tse, Wong and Ng2012) and/or inefficient communication between patients and healthcare professionals (Liang et al., Reference Liang, Yates, Edwards and Tsay2008b). Without adequate information, the patients may find that it is difficult to communicate with health professionals about their concerns and to know where to seek help (Butow et al., Reference Butow, Sze and Dugal-Beri2010; Liang et al., Reference Liang, Yates, Edwards and Tsay2008b).
As with patient-related barriers, the strong influence of a family's beliefs on pain management reported by Chinese cancer patients reflects the cultural importance of family relationships, loyalty, obligation, obedience, cooperation, interdependence, and reciprocity in Chinese society (Dayer-Berenson, Reference Dayer-Berenson and Dayer-Berenson2014b). In a traditional Chinese family, health decisions are based on a process of family consensus in which the oldest family members or the eldest son usually has the greatest influence. Being able to stay with family helps overcome hardships (Chung et al., Reference Chung, Wong and Yang2000); however, this closeness can change patients’ pain perceptions because they may fear that the cancer will spread to other family members or they may feel shamed in front of their friends (Chung et al., Reference Chung, Wong and Yang2000).
The stigma and concern over social networks may prevent Chinese cancer patients from sharing their experiences of pain with their families. This dynamic has implications for how healthcare professionals engage family members in shared decision-making regarding pain management. Strategies aiming to empower patients and their families to self-manage pain are essential for optimal pain management (Luckett et al., Reference Luckett, Davidson and Green2013).
Patient education in relation to reporting pain and use of analgesics was an essential method to improve cancer patients’ knowledge's and adherence to analgesics (Oldenmenger et al., Reference Oldenmenger, Sillevis Smitt and Van Dooren2009). Educational interventions for the families about managing side effects, disease progression, and around-the-clock analgesics were also important because Chinese cancer patients were heavily dependent on their families, especially during palliative care (Lin, Reference Lin2000).
The health professional-related barriers reported by patients in this study are consistent with those reported by physicians and nurses (Oldenmenger et al., Reference Oldenmenger, Sillevis Smitt and Van Dooren2009), which may be associated with health professionals’ analgesic beliefs (e.g., concerns about addiction and side effects) and inadequate knowledge and skills in cancer pain management (Li et al., Reference Li, Yu and Tang2013; Oldenmenger et al., Reference Oldenmenger, Sillevis Smitt and Van Dooren2009).
The limited reports of using the WHO three-step ladder to guide pain treatment and inadequate prescription of opioids for cancer patients reflect the importance of increasing healthcare professionals’ awareness of analgesic use in cancer pain management. The outcome of pain treatment can only be improved when routine pain education and appropriate doses of opioids are provided and treatment are regularly adjusted (Dy et al., Reference Dy, Asch and Naeim2008). Health policies need to be reinforced to provide training programs for health professionals to enhance their knowledge and skills in pain control and to promote opioid usage in Chinese cancer patients (Lin et al., Reference Lin, Hsu and Fu2016).
The inadequate prescription of opioids and the limited access to opioids reported in the included studies was similar to the findings of Western researchers; opioid-related fears have been commonly observed in Western literature (Flemming, Reference Flemming2010) and were likely associated with government restrictions on opioid usage (Open Minds, 2005). Although understanding the effectiveness and safety of opioids in chronic pain management was gradually increasing and the importance of opioids in pain relief had been addressed, opioid use remained restricted because many national laws have focused on controlling misconduct, abuse, and addiction (Open Minds, 2005). The rules and regulations should be updated to eliminate the fear of opioids (Open Minds, 2005).
At the healthcare system level, limited access to analgesics, a lack of after-hours access to opioids, and concerns on the quality of pain management services at local community hospitals. This suggested that health service reforms should focus on increasing affordability and accessibility of analgesic and community-based pain services and supporting pain self-management for cancer patients and their families at home.
The similarities between the barriers reported in Chinese populations and in the Western literature may partly result from most of the validated measures used in the included studies were developed for non-Chinese-speaking populations and only focused on patients’ perspectives to pain and analgesics. Evaluating influential cultural and social factors affecting unrelieved cancer pain is urged to inform effective interventions for cancer pain management (Jacobsen et al., Reference Jacobsen, Møldrup, Christrup and Sjøgren2009). A reliable and valid instrument should be developed to ensure better coverage of barriers that reflect specific Chinese cultural considerations.
Limitations and strengths
The generalizability of findings in this review may be limited because of the small numbers of articles identified and multiple methodological factors. The majority of the studies used a cross-sectional design and a convenience sampling technique. More than half of them were conducted at a single study site. All studies were undertaken in hospital settings of metropolitan areas and participants’ demographic data in some studies were unclear, so it was uncertain if the studies included participants from remote areas.
Only small numbers of participants were outpatients; therefore, the barriers and needs reported in this review may not reflect patient barriers and specific needs in cancer pain management when they were discharged home. That the majority of participants in the included studies were males may potentially have led to bias because of gender differences in pain and pain management.
Despite these limitations, the findings of this review have been strengthen by adhering to a review protocol with multiple reviewers involved throughout the process of search, quality appraisal, data extraction and analysis, and reporting to maintain the consistence and rigorousness. The Chinese data translations were cross-checked by a highly qualified bilingual academic to ensure completeness and accuracy.
Even though the sample size in some studies were small. the findings of this review were based on primary data reported by more than 6,000 Chinese cancer patients. It may provide valuable information to health professionals and researchers for future development in clinical practice and research and improve outcomes of cancer pain management for people from Chinese backgrounds.
Conclusion
Adequate cancer pain management for cancer patients of Chinese backgrounds needs to start with an understanding of patient and family perspectives on pain and analgesics and the barriers preventing them from achieving optimal pain outcomes.
The findings of this review may inform development of health interventions to meet information needs of Chinese cancer patients and their families in relation to the pain and analgesics to (1) encourage patients to report their pain; (2) be actively involved in their pain treatment, adhere to the around-the-clock analgesic regimen, and increase their use of oral analgesics; and (3) increase their access to after-hour pain services.
Findings of this study may also be used to develop educational programs for health professionals to enhance their competence in managing cancer pain for patients from Chinese backgrounds, particularly to increase their awareness regarding importance of using adequate analgesics in cancer pain management and to strengthen their skills in effective communication and management of analgesic side effects.
Cancer patients from Chinese backgrounds are more likely to seek traditional Chinese medicines and/or to engage with the culture-related health practices such as Qigong, acupuncture, and transitional Chinese massage for their pain control. However, this review was not able to provide information about the needs and barriers of Chinese cancer patients in relation to nonpharmacological interventions because the existing literature has mainly focused on pharmacological analgesia. Future studies based on cancer pain management guidelines addressing this area are needed to inform development of multidisciplinary and biopsychosocial pain management approaches that are culturally appropriate.
Another notable gap in the literature concerns the absence of studies focusing on Chinese immigrants’ cancer pain management-related experiences. Further research directed by cultural care theories or models is required to identify cancer pain management-related barriers and cultural influential factors in Chinese immigrants living in countries that have different cultures, especially those who have less support after they are discharged home and/or are receiving pain treatment at clinics or community services.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951517001171.
Acknowledgments
This review is part of the “Chinese Migrant Cancer Pain Project,” which is funded by a Research Training Program Scheme of the Department of Education and Training of Australian Government. The authors declare no conflicts of interest.
