Challenges in a Technology-Based Cancer Pain Management Program Among Asian American Breast Cancer Survivors

Abstract

This paper aims to discuss the challenges faced during a pilot study that tested a technology-based cancer pain management program among Asian American survivors of breast cancer and provide directions for future technology-based interventions for racial and ethnic minorities. Data consisting of research diaries and meeting minutes underwent content analysis to extract themes that reflected the challenges. The challenges included those related to: (1) diversities within the population of Asian American survivors of breast cancer; (2) survivors’ treatment and healing process; (3) Internet resources from the participants’ countries of origin; (4) building trust between researchers and participants and gatekeepers; (5) fidelity of the intervention; and (6) cultural sensitivity. Future design and implementation of technology-based programs for racial and ethnic minorities must consider these challenges.

With recent advancement in computer, Internet, and smartphone technologies, researchers began to use technology-based interventions significantly more often than before.^1–5 With increasing use, the effectiveness of technology-based interventions became a subject of interest in providing support and coaching for people with various chronic conditions.^1–5 Technology-based programs have high potential to improve survival rates and quality of life among those with chronic conditions, reduce racial and ethnic disparities, and facilitate and increase access to health care by effectively providing information and support for those in need.^1–3 In addition, technology-based interventions are easily accepted by marginalized populations including racial and ethnic minorities,⁶ who frequently prefer Internet resources over traditional resources due to their difficulties in establishing equal and trusting relationships with physicians in face-to-face settings.^4,5,7

Despite the promising potential of technology-based interventions,⁸ little is still known about the challenges in using technology-based programs among racial and ethnic minorities. A literature search was conducted using multiple databases, but resulted in very few articles that discussed practical issues in using technology-based programs in general.^9–12 The few articles addressed general ethical issues arising from Web-based research and other practical issues related to trust building, authenticity, and recruitment and retention.^9–12 However, little has been reported regarding the challenges in using technology-based interventions among racial and ethnic minorities.^13–16 The only prominent challenge reported is the difficulty in recruiting and retaining racial and ethnic minorities in technology-based interventions.¹⁷ With a drastic increase of spam incidents in Internet settings, racial and ethnic minorities’ willingness to participate in technology-based interventions has decreased in recent years.^8,13,18

This article aims to discuss the challenges that the research team faced in conducting a pilot study that tested a technology-based cancer pain management program among Asian American survivors of breast cancer, as well as to provide directions for future technology-based interventions among racial and ethnic minorities. First, the pilot study that provided the basis for our discussion is briefly presented, and the method used to extract the themes reflecting the challenges follows the study description. Then, the challenges found in the pilot study are presented and discussed in the context of current literature. Finally, implications for future technology-based interventions among racial and ethnic minorities are suggested based on the discussed challenges.

Methods

In a pilot intervention study (the parent study of this discussion paper), a technology-based cancer pain management support program for Asian American survivors of breast cancer [CAPAA] was tested among three sub-ethnic groups including Chinese, Korean, and Japanese participants in a randomized controlled trial (N = 94). The Institutional Review Board (IRB) of the institute where the parent study was administered approved the study, and the CAPAA research team obtained informed consent from all the participants through the project Web site.

Participants were recruited via Internet communities and groups for breast cancer survivors and/or Asian Americans. Potential participants who visited the project Web site were asked to provide informed consent, and if they met inclusion criteria, they were recruited to the study and randomly assigned to either the intervention or control group. Self-identified Asian American women (Chinese, Korean, or Japanese) who were 21 years of age and older; had been diagnosed with breast cancer in the past 5 years; experienced cancer pain during the past week (at least 2 on a 5-point scale); could read and write English, Mandarin Chinese, Korean, or Japanese; and who had access to the Internet through computers or mobile devices were included in the study. The control group was required to regularly visit the American Cancer Society (ACS) Web site on breast cancer and pain management in multiple languages, whereas the intervention group was required to use both the CAPAA and the ACS Web sites. The intervention group was given a user ID and passwords to access the project Web site, and only user IDs were seen by other participants.

The CAPAA program included: (1) a social media site with chat functionality, (2) interactive online educational sessions, and (3) online resources. All these intervention components were available in four languages (English, Mandarin Chinese, Korean, or Japanese). The research team asked the participants to go through one or two designated educational sessions each week and to join the online discussion using the CAPAA social media site. Meanwhile, participants were encouraged to share cancer pain experiences and seek support from peers and the research team via the CAPAA social media site. Online resources included more than 20 links to resources from scientific authorities in English, Mandarin Chinese, Korean, or Japanese. Additionally, both groups were asked to use the resources and information on breast cancer and cancer pain provided by the ACS Web site.

As mentioned above, this paper is to discuss the challenges that the research team encountered in implementing the intervention among Asian American breast cancer survivors. The research team comprised three registered nurses and three experts in health-related areas who were bilingual in English and at least one of the other three languages (Mandarin Chinese, Korean, or Japanese). During the research process, individual research team members kept research diaries regarding the challenges that they had faced during the research process (i.e., challenges related to online records of the CAPAA education modules). Each of the research team members wrote 1 to 2 single-spaced pages in the research diaries weekly. The study was conducted for 1 year, and more than 50 pages per person were written. Also, the minutes of weekly research team meetings were kept. In the research team meetings, any issues and/or concerns related to study administration (e.g., retention and adherence in the past week) were discussed. Through each research team meeting, 1 to 2 single-spaced pages of minutes were generated, and more than 50 pages of minutes were maintained during the study process.

To identify the challenges in the implementation of the technology-based cancer pain management program among Asian American survivors of breast cancer, the research diaries and minutes were analyzed using the content analysis method proposed by Weber.¹⁹ In this analysis, each word was the unit of analysis. First, the diaries and minutes were coded using line-by-line coding. Then, the codes were categorized by content, and idea categories representing the challenges in the development and administration of the intervention were identified by linking the categories. Finally, the idea categories were used to extract the themes reflecting the challenges in the technology-based intervention. Yet, it is noteworthy that these data were used just to support our discussion points in the paper; again, this is a discussion paper on the challenges that the research team encountered in the research process, not an empirical research paper reporting a qualitative study on the challenges.

Findings

Six major themes were extracted to reflect the challenges in implementing a technology-based intervention for cancer pain management among Asian American survivors of breast cancer. The challenges were those related to: (1) diversities within Asian American breast cancer survivors; (2) survivors’ treatment and healing process; (3) Internet resources from the participants’ countries of origin; (4) building trust between researchers and participants/gatekeepers; (5) fidelity of the intervention, and (6) cultural sensitivity in word selection.

Diversities within Asian American Breast Cancer Survivors

We initially thought we could deal adequately with diversities among Asian American survivors of breast cancer by selecting only three sub-ethnic groups in Asian American communities. However, it turned out that there were unexpected variations within the three sub-ethnic groups studied. For example, Chinese Americans are diverse groups that include a number of regional, lingual, and religious sub-groups.²⁰ However, we faced a greater extent of diversity than expected. For instance, we considered “ethnicity” as Chinese, Korean, or Japanese in the questionnaires that we used for the study; but “ethnicity” among Chinese Americans actually referred to Han, Zang, Yi, Chaoxian, or else. There are 55 ethnic minorities in mainland China, and each group has unique cultures, customs, and even languages (eg, Cantonese versus Mandarin).

Second, differences in networks and community activities existed, even between some sub-groups within the same ethnic group. For instance, although Chinese Americans from Mainland China and from Taiwan identified themselves as Chinese Americans, they appeared to gather separately in their daily lives, which made us consider different places for recruiting different groups of Chinese Americans. When recruited through our gatekeepers who had come from Taiwan, the participants were also Chinese Americans from Taiwan. Similarly, when recruited through our gatekeepers who had come from Mainland China, the participants were Chinese Americans from Mainland China. Thus, we needed to reflect these differences in our selection of Internet resources and educational modules. Also, we needed to separate these two distinct sub-groups throughout the intervention process due to potentially different information-seeking behaviors, preferred social media (e.g., LINE, WeChat), and written languages (e.g., traditional Chinese or simplified Chinese characters). For example, in the pilot testing stage, several participants originally from mainland China found it difficult to understand several survey questions in traditional Chinese characters, or had difficulty reading traditional Chinese characters. Participants also pointed out “strange/awkward” words on the online forum, though they did not have problems understanding the information. This in part might have resulted from different forms of translated medical-terms that are commonly used in Taiwan and Mainland China. For instance, “Post-Traumatic Stress Disorder” refers to “創傷後壓力疾患” in Taiwan and “创伤后应激综合症” in Mainland China.

Survivors’ Treatment and Healing Process

Implementation of the intervention was influenced by the participants’ treatment and healing process, and the process was not static, but rather dynamic in response to unpredictable factors. In most cases, participants were actively involved in the program at the beginning of the study, especially when the weekly discussion topics were of interest to them. However, many of them left the study once their needs were met or when there were changes in their treatment and healing process. For example, one participant was actively seeking advice because she was eager to obtain some information on the diagnosis and treatment process. However, after she got into her first cycle of chemotherapy, she did not participate in the program. Presumably, her immediate needs (i.e., chemotherapy) were met. Another participant lost interest once she received some information and coaching on her psychological and subsequent sleeping problems. A similar case was reported for a participant whose pain management was successful and who perceived no further need for the relevant information.

Throughout the intervention, participants’ interests kept changing along with their treatment process. For those who completed cancer treatment, their interests were often shifted to health promotion and disease prevention during survivorship (e.g., potential complications of breast cancer, signs and symptoms of recurrence of breast cancer, reconstruction of breast, cutting-edge research findings on breast cancer, and evidence-based health promotion behaviors such as nutrition or physical activity). Consequently, the intervention needed to reflect the participants’ changing interests and needs throughout their treatment and survivorship process.

Internet Resources from the Participants’ Countries of Origin

Currently, Asian American women with breast cancer whose first language is not English can take advantage of a number of Internet resources available in their languages of origin. During the intervention, some participants even suggested a few Internet resources that they had been using. Several pitfalls, however, were identified in using the Internet resources available in countries outside the U.S. First of all, the Internet resources were sometimes blocked by the government (especially those in mainland China) and those living outside their countries of origin could not see the Web sites’ content. Also, some participants received updated news feeds from mainland China, including health messages, through social media (e.g., WeChat). To provide the most up-to-date resources to participants in the three sub-ethnic groups, the researchers were required to create an account to gather necessary and appropriate information on each platform. In addition, many participants collected health information from non-professional sources, although they lacked the necessary health knowledge to evaluate its accuracy.

Building Trust between Researchers and Participants or Gatekeepers

In this study, the gatekeepers were community leaders, Web site owners of Asian American-specific Internet communities and groups, and leaders of local community groups and organizations. The communities and groups were identified through search engines including Google (Google, Mountain View, CA), Bing (Microsoft, Redmond, WA), Ask (Ask, Oakland, CA), and Wow (AOL, New York, NY), and Facebook (Facebook, Menlo Park, CA). Web sites maintained by the communities and groups were evaluated according to criteria for Internet cancer support groups suggested by Im et al.,²¹ and only verified sites were asked to post the study announcement. In many cases, gatekeepers did not respond to contacts initiated by the researchers, especially through e-mail or by research assistants from differing ethnic backgrounds. Reasons for this may include unfamiliarity with and lack of trust in the research team, the volume of spam the sites receive, and filtering by firewalls when the subject line of an email contained specific words (e.g., study).

Typical asynchronous interactions in Web-based communication made potential participants suspicious of the attempts to recruit them to the study, and Asian American communities are often closed to outsiders. Consequently, it was not easy to get cooperation from the Internet communities as reported in the literature on racial/ethnic minority research.^15,22 Indeed, forming connections with gatekeeper(s) who could provide access to potential participants has been an issue as reported in racial/ethnic minority research in general.¹⁵ As in traditional research among racial and ethnic minorities (e.g., face-to-face studies),^22–26 finding and connecting to key gatekeepers was the first step in this study. However, the most difficult part was building trust with gatekeepers as highlighted in the literature on recruitment.^22,24 Gatekeepers often misunderstood the intent of the study and thought that the research team was using group members simply to accomplish the research goals without regard for their well-being. Even when the research team connected to gatekeepers, they were reluctant to help recruitment until trust was established. For example, when the research team contacted gatekeepers only by email or phone calls, they either ignored efforts or failed to recruit participants.

Fidelity of the Intervention

One of the challenges in ensuring the fidelity of the intervention was assessing participant adherence. Because of the self-management nature of the intervention, participant levels of involvement varied, although the same interventionist and protocol were used. According to the project Web site tracking system, not every participant in the intervention group used all site features. Variations were observed among the participants in the time spent on learning educational modules, responsiveness to weekly coaching emails, and involvement in online discussions. For instance, one participant selected only several topics of interest to learn rather than following weekly schedules set by the research team to complete all educational modules. The discrepancy in the level of adherence made it difficult to ensure the fidelity of the intervention.

Of note, the retention rate was lower in the control group than the intervention group. One possible explanation is that their expectations of the study were not fulfilled because they had been assigned to the control group. One participant in the control group asked for access to the educational resources and online activities, which were mentioned in the informed consent. She became non-responsive after she was not allowed access to the intervention resources. In addition, despite the informed consent process, one participant did not recognize the 3-month commitment to the study before being reimbursed for her participation.

Later in the study, one research assistant posted the recruitment advertisement on Craigslist (Craigslist, San Francisco, CA), which was not a popular site for Chinese Americans. However, 51 participants were recruited in the course of 1 night. All of them completed the screening survey very quickly, but they became non-responsive to regular emails after receiving the timetable of activities required of participants. Only one participant recruited on Craigslist completed the 3-month follow-up survey. Moreover, another participant’s email address was identical to one held by a participant who, in a previous study, had self-reported as non-Asian, but in this study self-identified as Chinese. Due to a lack of response to our emails asking for confirmation of sub-ethnicity, we eventually excluded this participant from the study.

Finally, during the reimbursement stage, one participant submitted the reimbursement form with suspect information. For example, the last four digits of the Social Security number were given as 1234, and the first name appeared to be for a male. After consulting with our financial office, we sent out several follow-up emails to confirm the participant’s information, and received differing information as an answer. Although we paid the participant, these data were excluded from the analysis.

Cultural Sensitivity in Word Selection

As emphasized in the literature on racial and ethnic minority research,²⁷ cultural sensitivity was essential for this study; even the words in study announcements required careful selection. For example, Japanese participants were hesitant to join the study when we explained the intervention as an information and support program for “生存者(seizonsha).” However, when the word “サバイバー (sabaiba-)” was used, the participants found it acceptable. Both words could be used to translate “survivors.” However, “生存者(seizonsha)” had some negative connotations, which made the participants feel like that they were almost dying. On the other hand, “サバイバー (sabaiba-)” is a word meaning survivors that is phonetically translated into Japanese. In English-to-Japanese translation, katakana (direct phonetic translation) is frequently used in these days when the transcription of words from English is impossible because Japanese does not have the words or the corresponding Japanese word has negative connotations. Katakana is defined as “a form of Japanese syllabic writing used especially for scientific terms, official documents, and words adopted from other languages.”²⁸ It turned out that Japanese health care providers working in oncology fields widely used “サバイバー (sabaiba-)” to avoid potential negativism. Thus, in this study, the word “サバイバー (sabaiba-)” was consistently used rather than “生存者(seizonsha).”

Discussion

As discussed in the previous sections, six major challenges were identified in implementing the technology-based cancer pain management program among Asian American survivors of breast cancer. Although some of the issues have been reported, others are rarely discussed in the literature. First, the most frequently reported challenge in technology-based interventions is that participants must be able to use the technology involved in the intervention, and because of this, participants are more likely to be a select group of people.^9–12 For instance, participants tended to be highly educated Caucasians, even when they were recruited from rural areas or as older adults. In this study, all participants needed the ability to use a computer and/or smart phone technology, which surely limited the sample population similar to previous studies. However, as discussed, there were cultural diversities (e.g., sub-ethnic and regional characteristics), which were not expected at the beginning of the study. In addition, differences among participants categorized by treatment and healing process also needed to be considered during the intervention process.

Second, as reported in the literature, researchers usually could not guarantee that participants actually read and participated in the interventions.^29,30 Thus, the validity and reliability of the data depend mainly on participants’ desire to use and accept the technology.³¹ In addition, low retention rates for technology-based interventions were frequently reported,^9–12 I because the participants simply did not finish the intervention,³² could easily drop out of the study without consequences,³³ and/or did not feel comfortable about using technology (although they were willing to use).³⁴ In this study, the same issues related to low recruitment and retention rates were identified among Asian American survivors of breast cancer.

Third, lack of technological expertise among research team members has been frequently reported as a challenge in technology-based interventions in general.^30,35,36 Indeed, technology-based interventions require at least some skills and knowledge related to specific pieces of equipment (e.g. computers, Internet service, accelerometers, smart phones).^30,35,36 However, it is frequently difficult to find the right research team members who also have technological expertise (e.g., Web site developers and programmers, app developers, Web site designers).^37,38 Another subsequent issue related to technological expertise is high costs involved in developing technology-based interventions,^31,37 which require more time to prepare, structure, develop, and update the content,³⁷ in addition to the time needed for participants to accept the new technology.³⁹ Participants may also need more time to complete the intervention especially when they do not have previous experience with the involved technologies (e.g., use of apps).^40,41 In this study, we did not have any issues related to the research team’s technological expertise or high development costs because our engineering team was involved throughout the research process.

Finally, in this study, it was essential to have culturally matched research team members to provide culturally appropriate and adequate coaching and support, including culturally appropriate and sensitive terms, for the participants in the technology-based intervention. Furthermore, incorporating Internet resources from participant countries of origin was necessary to make the intervention work for this specific racial/ethnic minority group. These challenges have rarely been reported in the literature on technology-based interventions, mainly because few interventions have targeted one specific racial or ethnic group. With an increasing number of similar interventions, future researchers would need to address challenges related to cultural sensitivity more often.

Implications and Conclusions

Based on the previously discussed challenges, we want to conclude this paper with the following implications for future technology-based interventions among racial and ethnic minorities (see Table 1). It should be noted that the generalizability of the challenges reported in this paper may be limited because the CAPAA targeted only three sub-ethnic groups of Asian American survivors of breast cancer (Chinese, Korean, and Japanese).

Table 1.

The challenges in the technology-based intervention and their implications.

Challenges	Implications
Diversities within Asian American breast cancer survivors	Do not lump all Asian American breast cancer survivors as one target group. Tailor the intervention components to different sub-groups.
Survivors’ treatment and healing process	Consider participants’ treatment and healing process during the design and implementation process. Reflect the participants’ changing interests and needs.
Internet resources from the participants’ countries of origin	Incorporate Internet resources in other countries. Evaluate the Internet resources in other countries (e.g., through translation and cross-validation by at least two researchers with expertise in the area).
Building trust between researchers and participants/gatekeepers	Put great efforts to gain trust from potential participants and gatekeepers as reliable collaborators. Use culturally matched interventionists or research assistants.
Fidelity of the intervention	Develop a clear protocol to deal with possible inauthentic cases in the process of participant recruitment, participant reimbursement, and data management and monitoring.
Cultural sensitivity in word selection	Carefully choose the wordings used in the intervention. Collaborate with researchers from diverse cultures.

First of all, we should not lump all Asian American survivors of breast cancer as one target group. Rather, we need to strive to provide intervention components while considering diversities within each racial and ethnic minority group (e.g., Mexicans and Cubans among Hispanics). As discussed, there existed heterogeneity among individuals even within the same sub-ethnic group (e.g., Chinese Americans).

Second, the design and implementation process for technology-based interventions targeting racial and ethnic minorities also need to consider participants’ treatment and healing process. Indeed, it was essential to tailor the intervention to individual participants although the same educational modules and Internet resources were offered to each sub-ethnic group. In other words, flexibility would be essential in implementing the program to reflect the participants’ changing interests and needs over time.

Third, future technology-based interventions for racial/ethnic minorities need to include Internet resources from the countries of origin of potential users, which can benefit non-native speakers to a great extent. In this study, adopting resources from participant countries of origin (China, Taiwan, Korea, and Japan) was essential to provide adequate support. However, the accuracy of content from resources available outside the U.S. needs to be carefully evaluated first (e.g., through translation and cross-validation by at least two researchers with expertise in the area).

Fourth, in implementing technology-based interventions among racial/ethnic minorities, future researchers must make the effort to gain trust from potential participants and gatekeepers as reliable collaborators. In this study, one of the most effective ways to recruit Asian Americans for the intervention was to use culturally matched interventionists or research assistants; since gatekeepers felt greater affinity with similar ethnic backgrounds and shared the same cultural values, beliefs, attitudes, and language, they were more apt to be open-minded and willing to help recruit potential participants. Also, the participants were more willing to be engaged in the intervention.

Fifth, considering inherent limitations of technology-based interventions (e.g., anonymity, non-face-to-face interactions), researchers need to ensure the authenticity of participants at every step of the study. As previously discussed, several unauthentic cases were identified throughout the research process. A clear protocol needs to be in place to deal with possible inauthentic cases in the process of participant recruitment, participant reimbursement, and data management and monitoring.

Finally, future researchers need to carefully choose the wording in technology-based interventions since each language is a product of a culture. As discussed previously, the selection of culturally appropriate and sensitive words was essential to the study. It is impossible for a single researcher or a research team with homogeneous cultural or ethnic background to know subtle differences in the meanings of specific words in different languages and/or cultures. Although cultural competence and sensitivity can be learned, it could be achieved effectively through collaboration with researchers from diverse cultures.