Abstract
Frequently hard to reach and underserved, Asian Americans are the racial group whose chief cause of mortality is cancer. Efficacious survivorship care is important, but little is known about extant intervention efforts for this community and how culture has been integrated into these efforts. This study examined cancer survivorship interventions for Asian Americans and how culture has been addressed, using an integrated framework consisting of goals, theory, methods, and cultural concordance in the persons of the interventions. Mixed methods comprising a systematic review and critical analyses were employed. Results indicate that only 13 interventions have been delivered to this community, with six of them pilot studies, and that they used a narrow range of focus on cancer type, with all interventions focusing on breast cancer survivorship. Applications of theory and methods were incongruent with cultural valuation of emotion expression and help seeking behavior. Cultural concordance was operationalized mostly as the racial ethnic match between interventionists and survivors. Deep culture factors including cultural beliefs and values were rarely specified. Theory and research should move beyond the currently prevalent definition of culture as race, ethnicity, or language, and interventions should consider the role of culture in their goals, theory, methods, and persons. Advances in theory and research are needed, as neither reliance on the Western paradigm nor assumptions about Asian Americans can be appropriate for achieving cultural validity. Future conceptualization and operationalization should consider culture more than race, ethnicity, or language.
Keywords: culture, cancer survivors, Asian Americans, interventions, health disparities
As the second leading cause of death globally, cancer affects many dimensions of a person’s life, including physical, mental, and social aspects (World Health Organization, 2018). Cancer survivorship includes the continuum from initial diagnosis through the remainder of life, with a focus on the phase following active cancer treatment (National Research Council [NRC], 2006). Cancer survivorship interventions are programs that are designed to improve patients’ physiological and psychosocial outcomes (NRC, 2006). Physiological outcomes can include reducing pain and fatigue and improving symptoms; psychosocial outcomes can range from improving quality of life to reducing depression and anxiety (NRC, 2006).
With the number of cancer survivors increasing (Siegel, Miller, & Jemal, 2019), concerns have been raised about disparities in cancer survivorship research and racial ethnic minority outcomes (Aziz, 2007; Guidry, Torrence, & Herbelin, 2005; Halpern, McCabe, & Burg, 2016). A review of 65 studies on the survivorship outcomes of racial and ethnic minorities found that the studies have consistently called for identifying and addressing cultural variables influencing adaptation to and survival from cancer (Aziz & Rowland, 2002). Research has found that culture is central to the experience of cancer survivorship (Ashing-Giwa, Gantz, & Petersen, 1999; Avani et al., 2018). Culture can also influence how people cope with cancer. As a set of beliefs, values, emotions, norms, and practices (Markus & Kitayama, 1991), culture can guide individuals’ interpretation, appraisal, response, planning, and action during survivorship.
Little is known, however, about how culture should be addressed in cancer survivorship interventions for racial and ethnic minorities. Although quality of life has been a key outcome of survivorship care, research has shown that construal of quality of life may differ from culture to culture (Kleinman, Eisenberg, & Good, 1978; Naughton & Wiklund, 1993; Yu et al., 2000). Different goals, in turn, require different theories and methods. It is well known that extant theories and methods in social and behavioral sciences are based in Western paradigm, however (Henrich, Heine, & Norenzayan, 2010). When culture is considered in health interventions, it has frequently been conceived to be race, ethnicity, or language, or considered to be barriers to health rather than resources (Tan & Cho, 2019). Cultural inappropriateness could impede recruitment and retention of participants or hinder the achievement of maximum outcomes.
Examining culture is particularly important for Asian Americans whose leading cause of death is cancer (American Cancer Society [ACS], 2016; Torre et al., 2016). Asian American men and women are the only racial group whose leading mortality cause is cancer, with the exception of Latina women (Centers for Disease Control and Prevention [CDC], 2019a, 2019b). As racial minorities, Asian Americans are often hard to reach and underserved (Torre et al., 2016). Therefore, the objective of this study is to investigate the current landscape of cancer survivorship interventions for Asian Americans and how culture has been addressed in these interventions. In this effort, we develop and utilize an integrated framework for cultural validity including goals, theories, methods, surface and deep level representations, and cultural concordance between the persons of the interventions as described below.
Conceptual Background
Extant Frameworks
Scholars have proposed frameworks with which culture can be addressed in community health interventions. The cultural sensitivity framework delineates two structures of culture: surface and deep (Resnicow, Baranowski, Ahluwalia, & Braithwaite, 1999). Surface structure is observable characteristics of a cultural group, such as costumes, foods, and music. Deep structure involves perceptions, beliefs, values, and attitudes that are not observable and may influence the cultural group’s actions and behaviors. Extending Resnicow et al.’s (1999) framework, Kreuter, Lukwago, Bucholtz, Clark, and Sanders-Thompson (2003) described strategies for cultural appropriateness. These strategies span peripheral, linguistic, and evidential strategies to constituent-involving and sociocultural strategies. In addition, Kreuter et al. (2003) offered cultural tailoring as a strategy to improve the efficacy of interventions for racial and ethnic minorities. Most recently, Tan and Cho (2019) offered a revised framework which centralizes participants’ dynamic cultural identities, together with their socioeconomic contexts, as two of the primary factors in achieving cultural appropriateness and intervention goals. This revised framework, moreover, emphasizes utilizing cultural strengths as well as addressing cultural barriers.
These frameworks, although useful, may have limited applicability to cancer survivorship interventions as they have been developed for disease prevention and health promotion interventions. These latter interventions use media-based approaches for healthy members of the population. In contrast, cancer survivors are those who have been diagnosed and completed treatment of cancer; cancer survivorship frequently involves interpersonal communication between the survivor and the healthcare provider. Cancer survivorship care encompasses a broad spectrum of aims and approaches for monitoring and maintaining health (NRC, 2006). These include prevention of recurrence, surveillance of cancer spread, intervention for consequences of cancer and its treatment, and coordination between healthcare providers to fulfill the survivor’s needs. Furthermore, although health and wellbeing are a universal value, what is construed to be healthy and well may differ from culture to culture. Because of the distinct and complex nature of cancer survivorship and to better analyze and understand the role of culture in cancer survivorship communication, we integrate the perspectives of cultural adaptation (Bernal, Bonilla, & Bellido, 1995) and patient-centered communication (Epstein et al., 2005). Both of these have been developed in clinical contexts.
Bernal et al. (1995) propose that culturally sensitive interventions consider the following components: goals, concepts, methods, and persons. Goals concern the congruence between the interventionist’s and the participant’s objectives, for which Bernal et al. recommends framing of intervention goals within the cultural values of participants. Concepts refers to the concordance between the intervention theory and the cultural context. Methods refer to the cultural adaptions of intervention delivery. Persons concern racial, ethnic similarities and differences between participants and interventionists. This persons factor is further explicated by Epstein et al. (2005) in the patient-centered communication which specifies key components including patient, clinician, and relationship. Patient factors include illness experience, personality, socioeconomic status, and culture. Clinician factors include supportiveness, patient knowledge, and patient-centered orientation. Relationship factors include the concordance between patient and clinicians in race, beliefs, and values.
A New Framework
Integrating extant cultural appropriateness frameworks with those of cultural adaptation (Bernal et al., 1995) and patient-centered communication (Epstein et al., 2005), this study focuses on the following aspects of cancer survivorship interventions: goals, theory, content, methods, and persons.
Goals.
Survivorship is a distinct phase of the cancer care continuum, with various opportunities to intervene to improve care (NRC, 2006). Therefore, the intended outcomes of cancer survivorship interventions can be numerous. In this study, the cultural appropriateness of goals is defined as the congruency between intervention goals and cultural values. Different from Bernal et al., it is not a framing of intervention objectives with cultural values; nor are cultural values themselves the goals of intervention.
In cancer survivorship care, improving the quality of life of cancer survivors is frequently a fundamental goal (Gilbert, Miller, Hollenbeck, Montie, & Wei, 2008; Halpern et al., 2016; NRC, 2006). Construal of quality of life may differ from culture to culture, however (Kleinman et al., 1978). Mirroring this variation is the large number of different measures of quality of life available in the literature (Naughton & Wiklund, 1993). Therefore, culturally appropriate cancer survivorship interventions would be attentive to cultural construals of general and cancer-specific quality of life (see Yu et al., 2000).
Theories.
Theories inform and guide the development of interventions. Increasing scholars recognize that the predominant generalizations of human psychological and social processes of change have been offered on the basis of findings from a narrowly drawn sample. Specifically, White people in the Western world have been the population from whom generalizations about human motivations and behaviors have been proffered (Henrich et al., 2010). These theories comprised the bulk of the bases of cancer prevention interventions for Asian Americans (Tan & Cho, 2019). We do not yet know what types of theories have been used for cancer survivorship interventions for cultural groups, including Asian Americans.
Surface and deep culture factors.
Addressing cultural beliefs and values through messages has been considered central to efficacious health communication. Based on Resnicow et al.’s (1999) distinction of surface and deep structures, strategies and frameworks for enhancing cultural appropriateness have been offered (Kreuter et al., 2003; Tan & Cho, 2019). These conceptualizations may be more pertinent to media-based dissemination of messages to large groups of individuals for cancer prevention communication than interpersonal exchanges between an individual with history of cancer and interventionist for survivorship care. Thus, we focus only on the surface and deep culture structures represented in cancer survivorship interventions.
Methods.
Methods refer to approaches in the delivery and implementation of interventions. Whereas earlier health communication interventions relied on targeted methods in which a cultural group’s beliefs and values were addressed, Kreuter et al. (2003) proposed cultural tailoring where individualized messages are designed and delivered. Cultural tailoring recognized that individuals within a cultural group may hold differential levels of affiliation toward the culture, and a metaanalytic review found its efficacy in promoting cancer screening behavior (Huang & Shen, 2016). Given the nature of survivorship care to which patient-centered communication is crucial, cultural tailoring could be even more useful for cancer survivorship interventions. Moreover, growing health communication research has adopted an increasing array of novel approaches. This effort has resulted in shift from didactic to interactive methods and from in-person to technology-mediated methods to enhance impact. We seek to explore the methods employed in cancer survivorship interventions for Asian Americans.
Survivor and interventionist factors for cultural concordance.
Uniquely relevant to cancer survivorship interventions, person factors include patient factors, interventionist factors, and more importantly, the cultural concordance between the patient and the interventionist. In culturally appropriate interventions, a factor central to the patient would be cultural identities. This survivor factor would then determine the interventionist factor so that cultural concordance between the survivor and the interventionist could be reached. Cultural identities of the survivor should also determine the goals, content, and methods of the intervention. Earlier efforts focused on the racial ethnic concordance between patient and provider and research has found that this yields inconsistent contributions to the efficacy of interventions (Meghani et al., 2009; Schnittker & Liang, 2006). Cultural concordance could encompass a broader range of factors including beliefs, values, attitudes, and identities. An example of cultural identities is acculturation, a process in which members of different cultures influence each other (Alba & Nee, 2003). Through this process, a person’s dynamic cultural identities could be shaped, modified, or reinforced.
On this basis we propose the following research questions to examine the role of culture in cancer survivorship interventions for Asian Americans.
RQ1. What have been the goals and how has culture been addressed in the goals?
RQ2. What theories have been used and how has culture been addressed in the theories?
RQ3. What surface and deep culture factors have been addressed and how?
RQ4. What methods have been used and how has culture been addressed in the methods?
RQ5. What survivor and interventionist factors have been considered for cultural concordance?
We will also examine descriptive characteristics of the interventions including the types of cancer addressed and sex and ethnicity of the participants.
Methods
We employed mixed methods to address the research questions. We first conducted a systematic review of the literature to identify extant interventions and investigate their key characteristics. We then performed critical analyses of the interventions for a deeper understanding of the role of culture.
Search Strategy
The search focused on cancer survivorship interventions conducted in the U.S. for Asian Americans. The search was conducted on the following databases: Academic Search Complete, CINAHL Plus with full text, Communication and Mass Media Complete, Embase, ISI Web of Knowledge, Medline, PsychINFO, PsycArticles, and PubMed. All articles indexed as of July 5, 2020 were searched. A combination of search terms was used. For intervention: cancer, survivor, survival, survivorship, intervention, trial, program, and pilot. For the population: Asian, Asian Americans, Chinese, Korean, Japanese, Vietnamese, Cambodian, Kampuchean, Lao, Filipino, Thai, Pakistani, Indian, and Hmong. These ethnic subgroups were included because they represent the largest Asian American subgroups in the U.S and have statistics in the Special Section of Cancer Facts & Figures 2016 of ACS. We also searched Pacific Islanders including Native Hawaiian because they were combined with Asian Americans and their subgroups in the aforementioned ACS’s special report in Cancer Facts & Figures 2016 and another report in CA: A Cancer Journal of Clinicians (Torre et al., 2016). Similarly, they were combined in Leading Cause of Death in Males and Females reports of CDC (2019a, 2019b). All cancer types were included. To ensure the comprehensiveness of the search, we further scanned relevant journals (e.g., Journal of Cancer Survivorship) and the reference lists of review articles about interventions for Asian American cancer survivors (e.g., Wen, Fang, & Ma, 2014; Yılmaz, Schouten, Schinkel, & Van Weert, 2019).
Study Selection
Studies were included if they were empirical and used an experimental design by including a control group or a comparison point (e.g., pre- and post-test: Deng, Liang, La Guardia, & Sun, 2016) and reported quantitative results. We used Covidence (Covidence systematic review software, Veritas Health Innovation, Melbourne, Australia. Available at www.covidence.org) to manage the review process. A total of 2093 records were imported to Covidence and 531 duplicates were removed. After title and abstract screening, among the remaining 1562 articles, 1516 were removed based on the inclusion criteria. The remaining 46 records included 44 articles with full texts and 2 abstracts. The 44 articles were screened and 28 of them not meeting the inclusion criteria were removed. For the records with only abstract available, we contacted the corresponding authors and were able to obtain the full text article of one of the two. We were not able to include the other with only abstract because key information was missing. A further review of the articles indicated that three of them were from the same intervention of Lu et al. (2017) and that another three were from the same intervention of Lu, Gallagher, Loh, and Young (2018). Therefore, we removed the two (Chu, Wong, & Lu, 2019; Gallagher, Long, Tsai, Stanton, & Lu, 2018) of the three articles from Lu et al. (2017). Likewise, the two (Chu, Wu, & Lu, 2020; Chu, Wu, Tang, Tsoh, & Lu, 2020) of the three articles from Lu et al. (2018) were removed. In sum, a total of 13 different interventions were identified and included in the systematic review. Figure 1 presents the PRISMA flow chart. We included the articles from the same intervention in our critical analyses to ensure a full understanding of the Lu et al. (2017, 2018) interventions.
Figure 1.

PRISMA Flow Chart
Data Analyses
For systematic review two coders independently coded the 13 interventions. After independent coding, discrepancies were identified and resolved through multiple rounds of discussion and recoding. Through this iterative process, full agreement was reached for all variables of the systematic review. To code the goals of the intervention we referred to the outcome variables measured in addition to statement of goals described elsewhere in the article. For theory, content, and methods, we relied on the reporting in the article. For cultural concordance, we coded the survivor and interventionist factors first, and on this basis determined the concordance sought between the two. In the event the article presented no relevant information or the description was general or vague, we coded it as “unknown.”
Results
Descriptive Characteristics
All 13 interventions addressed breast cancer, with Deng, Chen, Swartz, and Sun (2019) and Mokuau, Braun, Wong, Higuchi, and Gotay (2008) interventions addressing other cancers in addition to breast cancer. All interventions involved female breast cancer survivors, with Deng et al. (2019) intervention including also male survivors and Mokuau et al. (2008, Mokuau, Braun, & Daniggelis, 2012) interventions including family members of the survivors (details unknown). Seven out of the 13 interventions included only Chinese Americans, four included Chinese- , Japanese- and Korean-Americans (Chee et al., 2017; Chee, Lee, Ji, Chee, & Im, 2020; Im et al., 2019; Im, Kim, Yang, & Chee, 2020), and two included Native Hawaiians (Mokuau et al., 2008, 2012).
Research Question (RQ) 1
RQ1 sought to examine the goals of the interventions and how culture has been addressed in the goals. Table 1 presents a summary. The goals ranged from physical to psychosocial. Six of the 13 interventions focused on physical outcome goals (Chee et al., 2017, 2020; Deng et al., 2019; Im et al., 2019, 2020; Lu, Zheng, Young, Kagawa-Singer, & Loh, 2012). Other than the three interventions that focused on physical outcomes (Chee et al., 2020; Im et al., 2019, 2020), the rest of the interventions aimed to improve psychosocial outcomes (e.g., knowledge, self-efficacy, perceived social support, positive affect, posttraumatic growth). Six interventions sought to improve quality of life (Chee et al., 2017; Deng et al., 2016, 2019; Lu et al., 2012, 2017, 2018). Two of the interventions intended to improve posttraumatic growth (Lu et al., 2012; Warmoth et al., 2020), which refers to individuals’ positive transformation after hardship and struggle (Tedeschi & Calhoun, 1996). Two interventions (Mokuau et al., 2008, 2012) sought to increase knowledge, self-efficacy, and coping among survivors and their family members. This goal was set because family or ‘Ohana was a primary resource for Native Hawaiian cancer survivors (Braun, Mokuau, Hunt, Ka’anoi, & Gotay, 2002).
Table 1.
Goals of Cancer Survivorship Interventions for Asian Americans
| Author, year | Goals |
|---|---|
| Chee et al. (2017) | To improve survivorship outcomes including perceived social support, self-efficacy, physical and psychological symptoms including pain, and to improve the quality of life |
| Chee et al. (2020) | To improve cancer pain experience |
| Deng et al. (2016) | To improve quality of life |
| Deng et al. (2019) | To increase patient knowledge, dietary behaviors, physical activity, weight status, and health-related quality of life |
| Im et al. (2019) | To improve menopausal symptoms including physical, psychological, and psychosomatic symptoms |
| Im et al. (2020) | To improve cancer pain and its accompanying symptoms |
| Lu et al. (2012) | To improve quality of life, physical health including fatigue, psychological adjustment including intrusive thoughts, affect, posttraumatic growth |
| Lu et al. (2014) | To decrease depression and anxiety |
| Lu et al. (2017) | To improve quality of life |
| Lu et al. (2018) | To improve quality of life |
| Mokuau et al. (2008) | To improve cancer knowledge, self-efficacy, coping behaviors, psychological distress for both survivors and their family members |
| Mokuau et al. (2012) | To increase knowledge, self-efficacy in accessing information on cancer, coping, recovery care for both survivors and their family members |
| Warmoth et al. (2020) | To improve positive affect and posttraumatic growth |
Research Question 2
RQ2 concerned theoretical bases of the interventions and how the theories were culturally relevant. The most frequently used theoretical framework was theory of behavioral change (Bandura, 1977; Bandura, 1982) and social cognitive theory (Bandura, 1986), used in four interventions (Chee et al., 2020, Deng et al., 2019; Im et al., 2019, 2020). For example, Im’s intervention for menopausal symptom management among breast cancer survivors was based on theory of behavioral change (Bandura, 1977) which predicts behavior as a function of attitudes, barriers, and self-efficacy. This intervention addressed culture-specific attitudes and beliefs, although the details were not specified. The second most frequently used theoretical framework was the expressive writing paradigm (Pennebaker, 1997), used in three interventions (Lu et al., 2012, 2017, 2018). In the expressive writing paradigm, individuals write about an important past emotional event. In Lu et al. (2012), for example, participants were asked to write about their deep feelings and thoughts about their breast cancer experience. Emotional and cognitive tendencies, however, can vary across cultures (Henrich et al., 2010; Kleinman et al., 1978; details in Discussion). One intervention (Chee et al., 2017) was based on the comprehensive program theory for the Internet cancer support group for Asian Americans (ICSG-AA). Although ICSG-AA was described as drawing on the team’s prior research with Asian Americans (Im, 2008; Im, Liu, & Kim, 2008), none of its components showed a connection to culture (Chee et al., 2017). Warmoth et al.’s (2020) intervention used broaden-and-build theory of positive emotions (Fredrickson, 2001) which predicts positive emotions widen one’s action repertoire and develop physical, psychological, and social resources. An assumption underlying the application of this theory to the cancer survivorship intervention for Chinese American women may have been that this population group would value positive affect after the experience of cancer diagnosis and treatment. Cultural valuation of positive emotions differ, however (details in Discussion). The rest, four interventions, did not report a use of theory (see Table 2).
Table 2.
Theories Used in Cancer Survivorship Interventions for Asian Americans
| Author, year | Theories | Source |
|---|---|---|
| Chee et al. (2017) | A comprehensive program theory for the Internet cancer support group for Asian Americans | Chee et al., 2017 |
| Chee et al. (2020) | Theory of behavioral change | Bandura, 1982 |
| Deng et al. (2016) | Unknown | |
| Deng et al. (2019) | Social cognitive theory | Bandura, 1986 |
| Im et al. (2019) | Theory of behavioral change | Bandura, 1977 |
| Im et al. (2020) | Theory of behavioral change | Bandura, 1977 |
| Lu et al. (2012) | Expressive writing paradigm | Pennebaker, 1997 |
| Lu et al. (2014) | Unknown | |
| Lu et al. (2017) | Expressive writing paradigm | Pennebaker, 1997 |
| Lu et al. (2018) | Expressive writing paradigm | Pennebaker, 1997 |
| Mokuau et al. (2008) | Unknown | |
| Mokuau et al. (2012) | Unknown | |
| Warmoth et al. (2020) | Broaden-and-build theory of positive emotions | Fredrickson, 2001 |
Research Question 3
RQ3 was about the surface and deep culture in the cancer survivorship intervention content. Four studies (Chee et al., 2020; Deng et al., 2019; Mokuau et al., 2008, 2012) reported to have included surface culture components, for instance Native Hawaiian cultural images and materials (Mokuau et al., 2008, 2012). One intervention (Chee et al., 2017) reported to have included acupuncture, herbal medicine, and red ginseng in the content but did not provide how they were used for which purpose, making it difficult to ascertain whether they were used as surface cues or deep cultural beliefs. Concurrently, Chee et al. (2017) sought to reduce stigma by correcting misinformation, thereby addressing deep culture. Overall, although ten out of the 13 studies reported to have incorporated deep level culture by addressing cultural beliefs and values, most did not indicate the specific beliefs, values, or attitudes addressed. Two of the ten studies (Mokuau et al., 2008, 2012) specified the detailed cultural values. These were spirituality and social connections among native Hawaiians. Table 3 presents a summary.
Table 3.
Surface and Deep Level Content of Cancer Survivorship Interventions for Asian Americans
| Author, year | Surface level | Deep level |
|---|---|---|
| Chee et al. (2017) | Unknown | Cultural attitudes, Chinese herbal medicine use, stigma reduction by correcting misinformation |
| Chee et al. (2020) | Perceptual features (color, design, menu) | Cultural attitudes |
| Deng et al. (2016) | Unknown | Eastern health beliefs and medical practices, Chinese cultural norms |
| Deng et al. (2019) | One focus group (n = 6) for cultural acceptability | Dietary practices and information |
| Im et al. (2019) | Unknown | Cultural attitudes toward breast cancer and menopausal symptom management; culture- specific education, coaching support, and resources |
| Im et al., 2020 | Unknown | Culture-specific content (e.g., herbal medicine, acupuncture) |
| Lu et al. (2012) | Not applicable | Not applicable |
| Lu et al. (2014) | Unknown | Cultural health beliefs, myths, behavioral patterns, and needs, traditional Chinese medicine, diet, and emotion management |
| Lu et al. (2017) | Not applicable | Not applicable |
| Lu et al. (2018) | Not applicable | Not applicable |
| Mokuau et al. (2008) | Native Hawaiian prayer, proverbs, materials | Native Hawaiian values of group, responsibility within the family, cooperation, support, and love |
| Mokuau et al. (2012) | Native Hawaiian stories, food, discussion of genealogy, cultural discussion format | Spirituality, responsibility, and family |
| Warmoth et al. (2020) | Unknown | Informational, social and emotional needs of Chinese breast cancer survivors |
Research Question 4
RQ4 asked the methods of the cancer survivorship interventions and how they were culturally relevant. Eight of the 13 interventions focused on help-seeking and -providing formats for the survivors. Four of them used online interactive formats (Chee et al., 2017, 2020; Im et al., 2019, 2020) and another four used face to face formats (Deng et al., 2016, 2019; Lu, You, Man, Loh, & Young, 2014; Warmoth et al, 2020). Cross-cultural research has found that members of Eastern culture are less likely to seek help and disclose their conditions than those of Western culture (Chen, 1995; Kim & Omizo, 2003; details in Discussion). Three studies used expressive writing methods with which Chinese American women wrote about their breast cancer survivorship experience with a focus on emotional experience (Lu et al., 2012, 2017, 2018). As briefly noted above, this approach may not be congruent with cultural motivations and behaviors (details in Discussion). Two studies by Mokuau et al. (2008, 2012) used family-oriented educational interventions. Although the interventions were frequently described as “culturally-tailored” (e.g., Chee et al., 2017, 2020; Deng et al., 2016, Im et al., 2019, 2020; Mokuau et al., 2008, 2012), a more accurate description would have been “culturally targeted” as they were designed for groups rather than for individuals. These interventions did not report having used individualized messages which is the definition of cultural tailoring (Kreuter et al., 2003); they did not specify the variable on which the intervention was tailored either. An exception was Deng et al. (2019) which used personally tailored workbook for the dietary behaviors of the Asian American participants. Table 4 shows a summary.
Table 4.
Methods Used in Cancer Survivorship Interventions for Asian Americans
| Author, year | Methods |
|---|---|
| Chee et al. (2017) | Internet support group including 3 components: interactive online message board, interactive online educational settings, online resources |
| Chee et al. (2020) | Interactive online discussion board, online educational sessions, online resources |
| Deng et al. (2016) | Support group meetings, educational seminars, one-on-one peer support, educational materials, newsletters |
| Deng et al. (2019) | Personally tailored workbook for dietary behaviors; quarterly newsletters, consultation with registered dietitians, phone counseling and prompts |
| Im et al. (2019) | A technology-based information and coaching/support program including educational modules, online resources, group and individual coping by nurse interventionists |
| Im et al. (2020) | Online educational modules, online resources, and group and individual (one-to-one) coaching |
| Lu et al. (2012) | Expressive writing |
| Lu et al. (2014) | Peer mentoring and educational sessions |
| Lu et al. (2017) | Expressive writing |
| Lu et al. (2018) | Expressive writing |
| Mokuau et al. (2008) | Family-oriented intervention providing educational sessions |
| Mokuau et al. (2012) | Family-oriented educational sessions |
| Warmoth et al. (2020) | Intervention included an educational component and a peer- mentoring component |
Research Question 5
RQ5 was about the person factors used for cultural concordance between the survivor and the interventionist. All interventions used race/ethnicity and language as culturally relevant survivor factors. No other cultural factors were considered for survivors, however. Similarly, race/ethnicity and language were used as culturally relevant interventionist factors. Additional cultural factors considered were background in training in Chinese traditional medicine for the educational module of three interventions (Deng et al., 2016; Lu et al., 2014; Warmoth et al., 2020), or training in cultural appropriateness with details unspecified (Chee et al., 2020). None of the studies reported to have assessed the concordance between beliefs and values of the survivors and interventionists. Taken together, these results suggest cultural concordance has primarily been operationalized as the match between race/ethnicity and language. Table 5 presents a summary.
Table 5.
Culture-Relevant Patient and Interventionist Factors in Cancer Survivorship Interventions for Asian Americans
| Author, year | Patient factor | Interventionist factor |
|---|---|---|
| Chee et al. (2017) | Ethnicity (Chinese, Japanese, Korean) and language use (English or one of the three Asian languages) | Registered nurse who consulted with two medical doctors; race/ethnicity, language unknown |
| Chee et al. (2020) | Chinese, Japanese, and Korean | Culturally matched trained registered nurses; details unknown |
| Deng et al. (2016) | Chinese with language use including Mandarin, Cantonese | Trained; fluent in a minimum of one Chinese or Taiwanese dialect |
| Deng et al. (2019) | Chinese | Registered dietitians; trained staff and volunteers; race/ethnicity unknown |
| Im et al. (2019) | Ethnicity (Chinese, Korean, Japanese), language use (English or one of the three Asian languages) | Ethnicity matched registered nurse |
| Im et al. (2020) | Chinese, Japanese, and Korean | Interventionists who shared the same ethnic background with the participants |
| Lu et al. (2012) | Writing and speaking Chinese (Mandarin or Cantonese) | Not applicable |
| Lu et al. (2014) | Writing and speaking Chinese (Mandarin or Cantonese) | Education: Chinese traditional medicine doctor. Peer mentors: matched with survivors’ language and country of birth |
| Lu et al. (2017) | Writing and speaking Chinese (Mandarin or Cantonese) | Not applicable |
| Lu et al. (2018) | Writing and speaking Chinese (Mandarin or Cantonese) | Not applicable |
| Mokuau et al. (2008) | Native Hawaiian | Three Native Hawaiians and one lifetime resident of Hawaii highly familiar with the culture |
| Mokuau et al. (2012) | Native Hawaiian ancestry | Unknown |
| Warmoth et al. (2020) | Reading and speaking Chinese (Mandarin or Cantonese) | Education: Chinese traditional medicine doctor; Peer mentors: matched with survivors’ language and country of birth |
Discussion
This study sought to analyze the current landscape of cancer survivorship interventions for Asian Americans and to understand the role of culture in these interventions. The 13 cancer survivorship interventions reviewed in this study represent pioneering work for improving healthcare for Asian Americans who are frequently hard to reach and underserved, and are subjected to prejudice and stereotyping (Cho, Li, Cannon, Lopez, & Song, 2020). Concurrently, our analyses uncovered important gaps and limitations in the current literature and potential directions for improving the extant research and action.
The gaps include the volume and maturity of research, the populations and cancer types the research has engaged, and investigators. Despite the fact that cancer is the leading mortality cause of the Asian American community, our systematic extraction of interventions using databases and additional sources identified only 13 different interventions. This number is smaller than the one found in a similar review done for the Latino community (McNulty, Kim, Thurston, Km, & Larkey, 2016) which found 15 interventions. Moreover, six of the 13 interventions were pilot studies. These results indicate the nascent nature of cancer survivorship intervention research involving Asian Americans. Eleven out of 13 interventions were for breast cancer survivorship, with most involving Chinese American women. This preponderance of single cancer type and population group indicates the need for diversification in survivorship interventions for Asian Americans. With all 13 interventions focusing on breast cancer, there appears to be gender disparity within Asian American cancer survivorship care, leaving sparse data on Asian American men. Finally, five out of the 13 interventions were from one research group (Lu and colleagues) and four from another research group (Im and colleagues). This predominance of these two teams of researchers suggests the need for training, developing, and supporting a greater number of investigators who can generate a greater diversity in theoretical perspectives and methodological approaches.
To understand the role of culture in the interventions, we analyzed their goals, theory, content, methods, and persons. Across these dimensions, culture has been conceptualized in three primary ways. Culture as a goal was to increase family support for survivors. Culture as a method was to provide online communities of same race, ethnicity, and language use for cancer survivors to share information and support. Culture as persons was to provide interventionists with the same racial and ethnic and language backgrounds. These current operationalizations appear limited and may not reflect advances in research on cultural motivations and behaviors.
Cultural identities that should be central to determining the goals, content, and methods were not assessed or addressed in these interventions. Interventions used race, ethnicity and language as the basis of developing cultural content, without considering potential variance within the groups. The need for being responsive to cultural identities of cancer survivors is illustrated in the goals including quality of life and posttraumatic growth. It is well known that cultural construals of quality of life differ (Kleinman et al., 1978). Reflecting the cultural variation is the large corpus of measurement scales developed for quality of life (Naughton & Wiklund, 1993). Yu et al. (2000) evaluated the cultural relevance of Functional Assessment of Cancer Therapy-General (FACT-G) scale with Chinese cancer patients. Participants found the scale dimensions were limited in scope, and factor structure emerged from this sample deviated from the original validation work. The five out of six studies with the goal of improving quality of life, however, employed scales that have not been culturally validated (e.g., Brady et al.’s (1997) Functional Assessment of Cancer Therapy-Breast, FACT-B; Cella and Tulsky’s (1993) Functional Assessment of Cancer Therapy, FACT). Whereas the experience of side effects is a negative indicator of physical well-being in FACT-B, research found that some Asian-Americans perceived side effects as an expected outcome and did not see them as a negative indicator of physical well-being (Kagawa-Singer, 1993). Deng et al. (2019) employed SF-36 (36-item Short-Form Health Survey; Ware, 2000). Although this scale has been used in various studies, some researchers suggested the need for further cultural validation work for the subscales including vitality and social functioning (Li, Wang, & Shen, 2003; Tseng, Lu, & Gandek, 2003).
Two of the interventions intended to improve posttraumatic growth among cancer survivors. Research has found that valuation of affect differs from culture to culture, however. Whereas members of individualistic cultures value and idealize high arousal emotions such as joy, excitement and enthusiasm, those of collectivistic cultures value low arousal emotions such as calm, peacefulness, and sereneness (Tsai, Knutson, & Fung, 2006; Tsai, Miao, Seppala, Fung, & Yeung, 2007). Negative emotions were a stronger predictor of poor health in physical and mental domains in the U.S. than in Japan (Curhan et al., 2014). Consequently, Matsui and Taku (2016) critique that existing models assume posttraumatic growth a culturally constant phenomenon and that cancer survivors, regardless of cultural identities, will benefit from it. Their review found the level of posttraumatic growth was lower among Japanese, and the subdimensions differ between Japanese and Americans.
Findings demonstrate the importance of cultural appropriateness of theoretical bases of interventions. Efficacy of the interventions were undermined when cultural variations were not considered. The use of expressive writing paradigm (Pennebaker, 1997) which has demonstrated therapeutic and clinical benefits in primarily White samples was not as effective for Asian Americans (Chu et al., 2019; Lu et al., 2017; Gallagher et al., 2018). Specifically, in an intervention comparing the efficacy of emotional disclosure (i.e., expressive writing), self-regulation, and cancer facts conditions, Chinese breast cancer survivors in the emotional disclosure group reported less improvement in quality of life (Lu et al., 2017) and posttraumatic stress disorder symptoms and posttraumatic growth (Gallagher et al, 2018). Further analyses of the data indicated low acculturation mitigated posttraumatic stress disorder symptoms in the self-regulation and cancer facts conditions but not in the emotional disclosure condition (Chu et al., 2019). These results support that data from predominantly White samples may not be generalizable to other populations (Henrich et al., 2010).
Another cultural variation that has yet to be considered in these interventions is help seeking behavior. While most of the interventions focused on social support provision (e.g., Internet support group, online coaching, peer mentoring), research has suggested that Asian Americans are less likely to seek help than other racial ethnic groups and to engage in disclosure behavior (Chen, 1995; Kim & Omizo, 2003). Individuals with interdependent cultural orientations exercise emotional restraint for the sake of group harmony (Friedlmeier, Corapci, & Cole, 2011). They do not want to burden others, including friends and family, by seeking help or comfort (Kim, Sherman, & Taylor, 2008). As negative affect is considered part of their lives, they do not actively work to remove them; nor do they seek to attain positive states by seeking help (Matsui & Taku, 2016). These perspectives and findings are inconsistent with the preponderance of help seeking format in the interventions reviewed in this study.
In general, the intervention content did not consider cultural variations within groups. Perceptions and uses of traditional Asian medicinal food and apparatus (e.g., red ginseng, acupuncture) could have differed between participants to participants. Similarly, traditional native Hawaiian symbols and customs emphasized in Mokuau et al. (2008, 2012) interventions may not have been uniformly important to their participants. The group approaches used in the interventions assume these traditional cues and customs were invariably central to the survivors’ self-concept. This lack of consideration of variance in cultural identities could be addressed in future research with approach including tailoring and personalization.
Limited accounting of participants’ cultural identities is also reflected in the ways with which interventions sought cultural concordance between the participants and interventionists. All studies considered language and race/ethnicity as participant factors and consequently concordance was limited to these two variables. Sharing the same racial and ethnic background may not necessarily mean sharing cultural beliefs or values. Research has shown that this demographic level concordance is of limited utility and sometimes may not be useful (Meghani et al., 2009; Schnittker & Liang, 2006). Based on the evidence, these scholars have argued for providing patients with choice of concordance or non-concordance, which would be based on cultural identities. Future research should continue to examine the conceptual and operational definitions of cultural concordance and their contributions to health communication outcomes.
Final Comments
Representing an initial set of models and strategies, these interventions comprise a solid foundation from which to identify directions for improving theory, research, and action for cancer survivorship research involving cultural groups. The review and analyses demonstrate the significance of cultural appropriateness of intervention goals, theory, and methods. Overall, the results show future goals, design, and delivery of cancer survivorship interventions should be more adaptive to cultural variations in beliefs, values, emotions, and coping behavior. Barriers to developing and testing culturally appropriate interventions for Asian Americans may include the reliance on the Western paradigm and the conceptualization of culture as race, ethnicity, or language. Integral to these efforts should be a more dynamic understanding of culture and conceptualization and operationalization of culture as more than race/ethnicity or language. Greater cultural appropriateness could not only enhance the efficacy and impact of the interventions but also improve the recruitment and retention of participants. The integrative conceptual framework of this study provides guidance for not only future efforts in cancer survivorship communication but also broad efforts for developing culturally appropriate health communication interventions.
Public Significance Statement.
Existing cancer survivorship interventions for Asian American are small in number and limited in focus and scope. Future research should examine the role of culture in the goals, theories, and methods of these interventions, and the concordance between interventionist and intervention participants.
Acknowledgments
The dataset associated with this manuscript is available at: https://osf.io/nhkjc/?view_only=d76fc5d014c3481fa0ba5cb7923c5209. The DOI of this project is: 10.17605/OSF.IO/NHKJC. The work reported in this manuscript was supported in part by grant R01CA176196 from the National Institutes of Health.
Contributor Information
Weidan Cao, Department of Biomedical informatics, The Ohio State University, Columbus, OH.
Hyunyi Cho, School of Communication, The Ohio State University, Columbus, OH.
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