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Abstract

Qualitative research, rooted in interpretivism, is valuable for studying immigrant populations and understanding cultural influences on health behaviors. However, few studies have explored the methodological challenges of researching older Korean U.S. immigrants, particularly on sensitive topics like end-of-life care, which requires deep cultural understanding. This paper examines the challenges encountered during a pilot study on end-of-life care among older Korean U.S. immigrants. In addition to identifying key methodological obstacles, we highlight strategies to improve future research on sensitive topics within immigrant communities. Our study, informed by existing literature, faced unexpected challenges at every stage—recruitment, data collection, and analysis—each requiring careful adaptation. First, recruitment posed significant challenges. Many participants were hesitant to discuss end-of-life care due to cultural stigma, fearing it might invite misfortune. Some resisted signing consent forms, unfamiliar with Western research protocols and concerned about potential consequences. Others expected structured surveys rather than open-ended interviews, making engagement difficult. Second, conducting interviews brought additional hurdles. The setting needed to feel neutral, as medical or religious environments influenced responses. Language proficiency varied, requiring interpreters and adjusted phrasing. Discussions about end-of-life care sometimes triggered emotional distress, necessitating sensitivity and frequent check-ins. Third, data analysis required careful consideration. Translating nuanced Korean expressions into English was challenging, as some terms lacked direct equivalents. Case vignettes also needed thoughtful adaptation to ensure cultural relevance and avoid bias. Finally, participant feedback led to important revisions, reinforcing the value of involving participants throughout the research process. Engaging them early and reflecting on challenges afterward can improve study design and data quality. By addressing these methodological hurdles, this study provides practical insights for strengthening qualitative research on immigrant populations, particularly when exploring sensitive topics.

Keywords

qualitative research methodology end-of-life care Korean Americans health disparities

The Korean immigrant group is older than U.S.-born Americans and other immigrant groups: 21% of Korean immigrants are 65 years of age or older, compared to 17% of other immigrant groups and 16% of U.S.-born Americans (Esterline & Batalova, 2022). These age demographics indicate that older Korean immigrants are facing or will face aging-related healthcare issues in the near future. Immigrants experience limitations in healthcare access and management due to language barriers, cultural differences, and other (e.g., legal) issues (Hong et al., 2018; Jang et al., 2020a, 2020b) which significantly affect their health and well-being. Older Korean immigrants, in particular, tend to have limited English proficiency and adhere to traditional Korean values (Yoon et al., 2012). As a result of the combination of communication barriers, differences in cultural background, and age-related functional and cognitive decline, older Korean immigrants have complex challenges in their healthcare management.

There are many obstacles and challenges involved in researching immigrant populations: for example, differences between insider-outsider views (whether the researchers share the same country of origin or ethnocultural identity), sample selection and recruitment among immigrants, and language and the inconsistencies of translation (Ogilvie et al., 2008). Cultural and linguistic differences among participants impact their attitudes towards research procedure, including their expectations of confidentiality in research (Halcomb et al., 2007). Moreover, sensitive topics that are not openly discussed or are taboo in certain cultures require special consideration when building rapport, recruiting participants, and collecting data (Yu, 2009).

End-of-life care is one such culturally sensitive research topic and requires in-depth cultural understanding, because culturally unique perspectives on death and dying influence an individual’s openness to discussing end-of-life care. In Korean culture, it is taboo to talk about death or serious illness because of the belief that talking about something will make it happen (Kwak & Salmon, 2007). Older adults in Korea admit their tendency to avoid anything having to do with death, reporting that knowing about an impending death was too disturbing (Cho, 2014). Similarly, older Korean immigrants in the U.S. think that it is better to avoid talking about death and dying before it occurs (Berkman & Ko, 2009) and, if an end-of-life discussion is unavoidable, they want it to be done indirectly (Kwak & Salmon, 2007).

Qualitative research, which has its philosophical roots in interpretivism (Creswell & Poth, 2016), is a useful approach for studying an immigrant population to obtain a better understanding of the cultural factors underpinning health-related behaviors and perspectives. However, few studies have reported on the methodological challenges faced by qualitative researchers when studying the perspectives of older Korean immigrants, particularly on sensitive topics. Previous methodological reports on research challenges among ethnic minority groups, including the immigrant population, have focused on recruitment strategies or measurement translation issues (Lopez-Class et al., 2016; Northridge et al., 2017; Ogilvie et al., 2008). However, the specific cultural background and life experiences of older immigrants could have significant implications on how data are collected and analyzed. Therefore, this paper presents the methodological and practical challenges encountered during a pilot study on end-of-life care for older Korean U.S. immigrants. In addition to identifying key methodological obstacles, this study revealed potential strategies to enhance future research on sensitive topics among immigrant populations. We report on lessons learned and suggest future directions across three research phases: recruitment, data collection, and data analysis.

The Study Context and Sample

A pilot study was conducted to assess the feasibility of conducting a qualitative study that explores the end-of-life decision-making process of older Korean immigrants. This study specifically focuses on their attitudes and practices concerning advance directives, which are legal documents providing instructions for medical care when an individual cannot communicate their own wishes. The eligibility criteria for research participation were individuals who met the following requirements: (1) Korean ethnicity, (2) 60 years old or older, (3) Born and raised in Korea until reaching adulthood, and (4) Resided in the U.S. for more than 10 years. We presented a series of case vignettes in which participants were walked through the decision-making process for end-of-life care. The study participants were asked to talk about their reactions to the case vignettes. For each participant, we conducted three interviews, with at least one week between each interview. In the first interview, participants’ demographics, including age, immigrant status, education level, religion, family, and household income, as well as their experiences with EOL care, were discussed. In the second interview, we primarily focused on case vignettes, discussing their own preferences and choices regarding advance directives and other end-of-life decisions. In the last interview, participants were asked to share their experiences of the study participation and make suggestions for conducting end-of-life care research for older Korean immigrants like themselves.

Four older Korean immigrants were enrolled in this study during the recruitment period from February 2017 to November 2017. Among the four participants, three completed all three interviews, while one participant completed two interviews, covering all the content prepared for the three interviews. The average age of the participants was 74 years (range: 64–88) and the average period of U.S. residence was 47.5 years (range: 37–63). Of the four participants, three were female and all identified as Christian. Two participants were married, and the other two were widowed. One participant had multiple chronic diseases with an advanced disease (end-stage renal disease), two participants had multiple chronic diseases without an advanced disease, and one participant had one chronic disease. All had completed their advance directives. This study received Institutional Review Board (IRB) approval from the Duke University.

Methodological Reflections on the Research Process

We designed our research based on previous literature focused on immigrant population and methodological challenges associated with studying this group. However, we encountered several unexpected challenges across all phases of our research: recruitment, data collection, and data analysis. In the next section, we describe our approach informed by prior literature and share reflections on the challenges we encountered, drawing from the participants’ feedback and the interviewers’ field notes.

Recruitment Phase

Challenges in Recruiting Participants for Sensitive Topic

Our Approach

Recruitment challenges and strategies have commonly and consistently been reported regarding researching immigrant populations and sensitive topics such as child sexual abuse, postpartum depression, or bullying (Hanratty et al., 2012; Timraz et al., 2017). A study found that advertising to general practitioners to recruit participants was less effective than initiating direct contact among older patients at the end of life and their caregivers (Hanratty et al., 2012). In the U.S., Koreans often establish strong social bonds with other Koreans, driven by their collectivistic values and a significant degree of interpersonal dependency, the tendency of depending on others for protection and support, even when it’s better to act independently (Bornstein, 2009). Korean ethnicity serves as a crucial factor in defining their social group, fostering openness and mutual support, even with unfamiliar individuals (Yoon et al., 2012).

With this in mind, we contacted a nonprofit organization for Korean Americans community to facilitate recruitment. However, only three potential participants went on to sign the consent form. Reluctance to share their private stories with others and to provide signatures on multiple documents were the reasons given for declining to participate in the study. To expand the pool of potential participants in our study, we changed the original cutoff age of 65 to 60 years. However, this modification did not significantly improve the recruitment rate. We recruited three more participants after this change, but only one individual ultimately completed the interviews. Two participants did not complete the interviews because of the time constraints of an active social life and not yet being retired. While the younger participants (those 60 to 75 years of age) reported that this study put demands upon their time, the older participants (those older than 75 years of age) stated that they did not experience any time pressure over the course of the study.

Lessons Learned

In our study, the researcher who recruited participants was Korean and introduced herself as a doctoral student. Participants stated that they agreed to take part in the research study “to help a student from the same country as themselves.” According to the 2012 Census survey, Korean respondents indicated their preferences for a Korean census-taker (Yoon et al., 2012). While there are differing perspectives on the insider-outsider division in researching ethnic minority groups, this study found that older Korean immigrants displayed a greater willingness to participate and trust the contact person due to their shared ethnic origin and the Korean language.

Most age assessments rely on chronological age but how people perceive age can be influenced by their sociocultural background. As life expectancy is prolonged, people who are younger than 75 years of age are still physically robust and socially active (Ouchi et al., 2017) and their retirement status and level of social activities vary. While changing the age criteria may expand the pool of potential participants, the possibility of increasing variances of physical and psychosocial status among older adults should be considered.

Reluctance to Discuss End-of-Life Care

Our Approach

When they need to discuss end-of-life care, older Korean immigrants prefer indirect communication, such as the use of euphemisms, or noon-chi, which means developing awareness of and sensitivity to another person’s nonverbal cues (Hong, Hong et al., 2018; Kwak & Salmon, 2007). This preference is shared by other ethnic minority groups with cultural taboos or beliefs regarding conversations about death (Chi et al., 2018). As a result of both emotional discomfort and two key cultural beliefs—that speaking about something will make it happen, and that talking about death is a sign of disrespect—the absence of end-of-life care communication among Korean Americans has been commonly reported (Park & Hendrix, 2018).

During the recruitment phase, where sensitivity to these cultural norms was not prominent, the explanation of the study topic (i.e., advance directives) required information about deteriorating physical status and impending death. However, this approach impeded the recruitment of older Korean immigrants. Snowball sampling is known to be a helpful strategy for recruiting participants who may otherwise be hard to identify. However, one research participant informed us that this method of recruitment was not effective because of the reluctance of older Koreans—excluding herself—to discuss end-of-life.

Lessons Learned

Discussion of the study topic begins in the recruitment phase. Thus, researchers should be cautious in selecting words or phrases to describe sensitive topics such as end-of-life care, not only for the data collection phase but also for the recruitment phase. When recruiting participants from ethnic groups that tend to avoid direct communication on sensitive topics, researchers should consider using euphemisms or descriptive words to fully explain the study purpose and procedure to potential participants. More consideration should be given to finding a balance between using indirect language and still conveying clear information. When the snowballing technique is used, researchers should also explain this recruitment considerations and strategies to current participants who are willing to share this information with potential participants.

Documents and Signature Requirement

Our Approach

Informed consent is a critical procedure in researching vulnerable communities. However, the notion that informed consent is obtained by individual choice is based on the Western concept of individualism (Bailey & Williams, 2018). In some cultures, consent is obtained by a collectivistic process that occurs by iterative discussion and exploration of the agenda and the group (Bailey & Williams, 2018). Thus, signing the informed consent form can have different meanings and expectations depending on the culture of both researchers and participants. Further, with the sharing of personal information, the risk of a breach of confidentiality has become an increasing concern among older Koreans (Yoon et al., 2012).

Several of our research regulatory and IRB procedures may have discouraged potential subjects from participating in the study. After the explanation of informed consent, the participants were required to write their initials on each page of both copies of the informed consent and put their signature on the last page of two copies of the consent form, one for the participant and the other for the researcher. The researcher then handed out the “Notice of Privacy Practices Acknowledgment” booklet and asked the participants to sign the “receipt” form. Participants also needed to provide their Social Security number for the “IRB Personal Data Disclosure Form” in order to receive reimbursement. Even if they declined the reimbursement, their signature on the form was still required to indicate this choice. Study participants were overwhelmed by the number of documents provided and signatures required, saying, “I don’t want to put any signature anywhere, if I can avoid it. Because, you know, these days I cannot believe anyone”.

Lessons Learned

While the purpose of informed consent and other study-related documents is to protect both researchers and participants, the requirement of providing a signature and personal information (i.e., Social Security number) kept older Korean immigrants from participating in the research, because of their concerns of the possibility of fraud (Yoon et al., 2012). Moreover, the legal status of these immigrants might have deterred them from participating in research that required a signature or Social Security number. Informed consent contained technical or legal terminology that may have affected the participants’ understanding of the research procedure and their rights as research subjects. Thus, the content and length of informed-consent documents should be developed in a manner that considers potential participants’ reading level and comprehension, if English is not their first language.

Unfamiliarity with the Interview as a Research Method

Our Approach

Participants’ lack of familiarity with being interviewed by researchers has been reported as a challenge (Horton et al., 2004). For example, in a study of Hmong refugee women, the researchers stated that the unfamiliarity of the interview as a research method provoked concerns among the participants (Goodkind & Deacon, 2004). In the Hmong language, there is no exact word meaning “interview” and this unfamiliarity also provoked their concerns (Goodkind & Deacon, 2004). Similarly, in Korean, “interview” is used as a loanword they typically refer to a formal conversation for job interview or news report. This led older Korean immigrants believe that they needed preparation or good communication skills.

The survey format is one of the most common data collection methods; hence, this format is familiar to older Korean immigrants (Park & Lunt, 2015). When the researcher mentioned study participation, the older Korean immigrants expected to fill out a survey. Words like “interview” or “research” led them to believe that expertise or a high level of education was required. After hearing the explanation of the research procedure – which involved interviewing then and listening to their stories rather than conducting a survey - some individuals refused to participate, saying, “I am not good at talking about stuff” or “I do not have a special story to share.”

Lessons Learned

One older Korean immigrant suggested that the researchers initiate the conversation with potential participants without mentioning the words “interview” or “research” so that these individuals could share their thoughts or stories more openly during the conversation. We did not heed this suggestion, as withholding the information that our conversation was for research purposes constitutes a potential ethics violation. Yet this suggestion was useful in that it underlined the importance of conducting interviews in a more conversational manner, allowing older Korean immigrants to share their stories more freely. The narrative method gives participants the opportunity to independently construct the story of their experiences and the meaning they ascribe to those stories, without being prompted by the researchers’ questions (Kenyon & Randall, 1999). This method has been used in the health-care disciplines, including medicine, nursing, and social work, to obtain older adults’ individual insights into their lives (Clark, 2015). In the future, the narrative method could be particularly useful in encouraging older Korean immigrants to discuss their perspectives.

Another reason for potential subjects’ reluctance to participate in the research was their concern about a breach of privacy. The qualitative interview method requires substantial interactions between interviewers and participants, and anonymity is not guaranteed due to the nature of the study design (Van Den Hoonaard, 2003). Substantial interaction during the data collecting process and the voiceprint or/and the participants’ own words in the transcript makes it impossible to guarantee anonymity in qualitative interview methods, especially within an ethnic minority group. As a result, many participants were not convinced that their privacy would be upheld.

Data Collection Phase

Need for a Neutral Interview Setting

Our Approach

The researchers should consider the participant’s mobility, privacy, and comfort level in selecting an interview location. Most participants choose their own home because it helps to maintain confidentiality and provides a safe place to share their opinions (Elwood & Martin, 2000). Interviewing at the participant’s home also could provide researchers contextual information about the participants that could contribute to writing field notes and facilitate a holistic understanding of the interview data.

In our study, most interviewees chose to be interviewed in their own home, which helped ensure their privacy and decreased their time commitment and financial burden. However, having a guest (the researcher) in the home could also be a possible deterrent to participation. A key cultural norm shared by older Korean immigrants dictates the need to treat their guests (any visitor to their house) well. One woman explained, “I think I should treat my guest well. I don’t want them to leave my home empty-handed, without feeding them well. So, it’s more my problem than yours” (F, 73 years old).

This cultural norm was reinforced by the fact that the participants were older adults, and the interviewer was a young student whom they perceived as needing their support. Two participants refused to receive study reimbursement, saying they did not need it, in addition to refusing to provide their Social Security number. All participants treated the interviewer with snacks, lunch, and packed Korean food. One participant even tried to give money to the interviewer, saying, “I do not need the money that much since I am old, but it must be hard for you to study in a foreign country.” (M, 88 years old)

Lessons Learned

Although older Korean immigrants invited the researcher to conduct the interview at their residence, they felt some emotional burden in having a guest in their home. Open-ended questions on preferred research location may not be an entirely free choice, because they may not consider other meeting places, such as a library, restaurant, or church although recruitment in the church was reported as an effective way to reach Korean immigrants (Park et al., 2018). Thus, conducting research in a private room at a church or another Korean institution could be an effective way to build trust and provide a private place while not overly burdening the participants.

Language Proficiency and Preferences

Our Approach

Korean immigrants are reported to have low English proficiency compared to other immigrant populations (O’Connor & Batalova, 2019; Sohn, 2010; Yoon et al., 2012). This tendency is one of the biggest barriers for them to accessing the formal U.S. healthcare system (Jang, 2016). Accordingly, previous studies of Korean immigrants and healthcare have been conducted in Korean (Berkman & Ko, 2009; Kwak & Salmon, 2007) or conducted in both Korean and English (Kim et al., 2015). Offering a Korean-language survey questionnaire or having a native Korean interviewer not only achieves clear communication and a better understanding of the participant’s perspective but also helps establish a positive relationship with the participant by using culturally appropriate words or phrases (Yoon et al., 2012). While recruiting participants, the researchers asked participants about their language preference and all research activities were done in their preferred language. While three out of four participants were interviewed in Korean, two participants did not express a strong preference for either language.

Lessons Learned

In our study, one participant said she would not be able to participate unless she could speak Korean during the interview. Another participant stated that she uses English for work and daily life but feels more comfortable speaking in Korean to express her feelings or opinions. One participant stated that speaking in Korean helped him to recall the past since this is the language he used in the earlier part of his life. English proficiency is often used as one of the eligibility criteria for healthcare research in the U.S., with immigrants underrepresented in those studies as a result. To gain a broader understanding of these immigrants’ perspective, researchers should evaluate how their feeling and thoughts vary depend on different languages and consider collecting data in participants’ preferred language.

Emotional Distress

Our Approach

End-of-life care research has been conducted with extra caution since the patients and caregivers involved tend to be physically and psychologically vulnerable (Addington-Hall, 2002). Distress related to discussing preferences for end-of-life care among healthy older adults has not been reported, but discussing preferences for end-of-life care or one’s eventual death may cause distress, depending on cultural attitudes and personal beliefs regarding death. In our study, the researchers carefully observed participants for nonverbal signs of distress. No participants displayed emotional distress during the interviews. One participant reported that, even though talking about end-of-life care was not a “delightful subject” for her, she thought that it was more beneficial than avoiding it. Another participant stated that she did not have emotional distress or discomfort during the research, because of her religious beliefs. However, participants in this study referred to themselves as “uncommon Koreans,” because older Koreans are typically reluctant to discuss end-of-life care.

Lesson Learned

During recruitment, individuals who were uncomfortable discussing end-of-life care were automatically excluded from the study. Consequently, the researchers did not observe any distress among the older Korean immigrants who participated in the study during the data collection phase. Researchers could have also considered asking participants if they had friends or neighbors who shared their thoughts on end-of-life care, as they may have similar openness about this topic. Another strategy to consider for future research is allowing participants to engage at a level of their comfort. When designing this study, we initially considered a binary choice: either participate and complete all three interviews or not participate at all. While this was explained to potential participants, older Korean immigrants may have felt a sense of responsibility once they began participating, even though they were informed that they could withdraw at any time. An alternative to this all-or-nothing approach is to let research participants choose which areas they are comfortable discussing and which contents they prefer not to address from a prepared interview guide, which would provide another way to gather more perspectives from older Korean immigrants.

Data Analysis Phase

Translation Issues

Our Approach

The translation step is a complex and critical process in cross-language qualitative research because it involves subtle connotations and meanings (Marshall & Rossman, 2015). Translation is not only a technical skill: it also requires the researchers’ judgment and interpretation (Marshall & Rossman, 2015). Interpretation must continue to convey the participant’s words and intentions accurately. Otherwise, the credibility of the research will be questionable (Al-Amer et al., 2015). Bringing in an outside translator complicates the processes immeasurably, in that more ambiguities of meaning and interpretation arise when the interview transcript is translated by someone other than the researchers (Marshall & Rossman, 2015). For this reason, translators should be not only bilingual but should also be able to add value to the research by providing further insight and understanding regarding a studied phenomenon (Al-Amer et al., 2015).

Translating data in early phases can acquire more narrative richness although it entails considerable time and cost (Santos et al., 2015). However, in the initial phase, when entire interview transcripts are translated word for word or line by line, the researchers may not be able to achieve both semantic equivalence (the similarity of meaning of each item in each culture) and content equivalence (whether each word is relevant in both the original and target cultures). (Jones & Boyle, 2011). When there is no equivalent word in the target language, or the semantics and syntax are different between the source language and the target language, there may be no appropriate singular translation for an expression (Al-Amer et al., 2015). Thus, translating data later in the process of analysis, after the first level of coding, allows the researchers to capture both explicit and implicit meanings from the transcripts (Suh et al., 2009).

In our study, the interview guide and informed consent were translated line by line. To guarantee the reliability and validity of the translation, a translation panel was formed. The three members of the panel were graduate students with qualitative research experience, and fluent in both English and Korean. The three panel members reviewed all documents to identify and resolve any ambiguous translations as well as any discrepancies between the original English version and the translated Korean version. On the other hand, interview transcripts were translated during the data analysis. The researcher who conducted the interview (HP) transcribed the interview verbatim and conducted the first cycle of coding. Then, the codes and excerpts were translated into English by the researcher (HP), and one of the panel members, fluent in both Korean and English, back-translated the codes and excerpts into Korean. These were compared to the original codes and excerpts, and extensive discussion took place iteratively to ensure semantic and content equivalence. Translated codes and excerpts were revised until agreement was met between the two translators.

Lessons Learned

We encountered challenges during the translation of interview transcripts from Korean to English. First, the use of translation and back-translation was not an effective means to ensure accuracy. Variations in linguistic rules between Korean and English exist, and at times the translator needed to alter the sentence structure to successfully translate one language into the other. This change of sentence structure required the researcher (HP) to interpret the original meaning of a sentence, which required potential modifications to the original sentences (Flaherty et al., 1988). Since the informed consent and interview guide are descriptive and explanatory, translation and back-translation could achieve conceptual equivalence. However, the interview transcripts contain participants’ opinions and emotions, which require more contextual interpretation. For example, one participant, describing his health status, said, “마음 편한 게* 가장 필요한 거 같아**.” The primary term of this sentence, “마음 편하다*,” can be translated to mean “relaxed” or “carefree” in English. This sentence can be translated as “It is necessary to be carefree.” When the sentence in English is translated back into Korean as “걱정이 없는 것이 필요하다***” it differs from the original Korean sentence in terms of conceptual equivalence. It is almost impossible to back-translate a sentence to match the original sentence in the source language. Back-translation is not an effective way to check the accuracy of a translation between Korean and English.

Use of Case Vignettes

Our Approach

Case vignettes have been used previously in qualitative studies to elucidate a participant’s opinions or expected behaviors regarding sensitive topics (Gourlay et al., 2014). Discussing a hypothetical case helps to put psychological distance between the participants and the phenomenon being discussed (Hughes & Huby, 2002), thus allowing the researchers to study sensitive topics. For example, in a previous study, an older Korean woman mentioned feeling uncomfortable discussing her own death but expressed a willingness to do so for research purposes. (Frank et al., 1998). This shift of perspective may have occurred because, despite her stated opinion, the research context depersonalized the topic of death. Thus, we developed a series of case vignettes in which an older Korean adult walked through the decision-making process for end-of-life care to facilitate the discussion.

A case vignette was created based on existing literature and the principal investigator’s empirical knowledge from clinical practice (Bradbury-Jones et al., 2014). This case vignette suggested that several factors, such as demographics, conflict with family members, religion, change in health status, and conflict with a family member, may affect patients’ end-of-life decisions. Along with these factors, participants were asked about their preferred decisions and the reasoning behind them.

Lessons Learned

While participants agreed that the case presented to them was likely to happen in later life for older Korean immigrants, they had difficulty providing their opinions on the hypothetical situation. In fact, the case vignette method was not particularly effective in facilitating the end-of-life discussion among the older Korean immigrants in our study. As voluntary participants, they already had an open and positive attitude towards discussing end-of-life care: all of them had already completed advance directives. Engaging with a vignette that described the decisional conflicts that may arise regarding advance directives thus led to a disjuncture between the participants and the character(s) in the vignette (Hughes & Huby, 2002). Additionally, participants were reluctant to offer opinions on other situations according to their cultural norms, because the EOL decision should be made by each family’s own beliefs and circumstances. Thus, the use of case vignettes should be weighed against the cultural norms to which the research participants subscribe.

Discussion/Conclusion

We have reported the methodological and practical challenges faced over the course of our end-of-life research among older Korean immigrants. Based on the previous literature, we chose the research design, including recruitment, data collection, and data analysis, and executed our study accordingly. In the recruitment phase, we faced obstacles related to recruitment, reluctance to discuss end-of-life care, issues with the informed consent document and signature, and participants’ unfamiliarity with the interview as a research method. During the data collection phase, we gained insights into the importance of creating a neutral interview setting, accommodating participants’ language proficiency and preferences, and addressing potential emotional distress related to end-of-life care discussions. In the data analysis phase, we identified key considerations regarding the translation and use of case vignettes.

Leveraging established trust in the immigrant community and carefully selecting research terms and language would benefit the research recruitment process. When the study contents include sensitive topics, such as end-of-life care, snow balling sampling can be helpful. Research participants will share the study’s description for the potential participation of others in their community. Thus, researchers should carefully consider the language and terminology used when describing study to recruiters and potential participants, especially in snowball sampling, where wording can influence willingness to participate. In addition, Researchers should also recognize that native language use and language preference in qualitative research serve as the foundation of communication and as catalysts for maintaining participants’ identity and facilitating their reminiscence. Moreover, case vignettes should be designed and implemented with cultural factors taken into consideration, especially for people with cultural backgrounds that highly value social norms.

We conducted a pilot study based on previous literature and received feedback from the participants throughout the research phase. This enabled us to make necessary revisions to our following study. Another effective approach for conducting research on sensitive topics among immigrant populations is participatory research design. By involving subjects from the study’s design phase, we can gain additional perspectives and insights. Furthermore, even after completing the research, discussing these methodological challenges with the study subjects can provide further insights and diverse solutions to address these challenges.

To successfully conduct research and obtain meaningful data from the immigrant population, cultural factors should be considered throughout the research, including the research design, procedure, and analysis. Our suggestions for future research may not directly apply to other ethnic minority groups but can offer considerations for researchers exploring sensitive topics in diverse populations. The description of obstacles to recruitment, as well as methodological challenges related to data collection and analysis in this study, will help future researchers design more rigorous studies for older Korean immigrants on other sensitive topics. Finally, the cultural norms we described in this research can be informative for health-care providers, enabling them to provide more culturally appropriate care for this population.

Footnotes

ORCID iDs

Hyeyoung K. Park

Ruth A. Anderson

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Methodological Issues of Qualitative Research on End-of-Life Care Among Older Korean Immigrants in the United States

Abstract

Keywords

The Study Context and Sample

Methodological Reflections on the Research Process

Recruitment Phase

Challenges in Recruiting Participants for Sensitive Topic

Our Approach

Lessons Learned

Reluctance to Discuss End-of-Life Care

Our Approach

Lessons Learned

Documents and Signature Requirement

Our Approach

Lessons Learned

Unfamiliarity with the Interview as a Research Method

Our Approach

Lessons Learned

Data Collection Phase

Need for a Neutral Interview Setting

Our Approach

Lessons Learned

Language Proficiency and Preferences

Our Approach

Lessons Learned

Emotional Distress

Our Approach

Lesson Learned

Data Analysis Phase

Translation Issues

Our Approach

Lessons Learned

Use of Case Vignettes

Our Approach

Lessons Learned

Discussion/Conclusion

Footnotes

ORCID iDs

Funding

Declaration of Conflicting Interests

References