With an increasing number of diverse ethnic groups in the United States, research studies targeting minority ethnic groups had steadily risen to develop culturally appropriate health care interventions (Nelson, Stith, & Smedley, 2002; Verhagen, Steunenberg, de Wit, & Ros, 2014). In conducting research with ethnic minorities, qualitative methodological approaches are most suitable as quantitative research designs utilize the positivistic perspective which assumes that the reality is objective and has a single interpretation in analyzing and interpreting data. However, qualitative approaches adopt the Interpretivism (Crotty, 1998) where researchers are required to possess cultural understanding in order to appropriately interpret research findings and make these findings valid and trustworthy. Only few studies have reported about the challenges faced by researchers when conducting research with ethnic minority groups among Koreans in areas that are particularly sensitive in nature. Therefore, this presentation highlights the methodological and practical issues in a pilot study that explored end of life care decision making among older Korean US immigrants.
Methods:
A pilot study was conducted to investigate older Korean US immigrants’ decision making on advance directives. IRB approval was obtained before the study officially commenced. Participants were recruited by referral of the President of a non-profit Korean organization located in North Carolina. To be eligible, Korea immigrants 1) were cognitively intact 2) were 60-year-old or above 3) could read and write either in English or Korean and 4) had at least more than 1 diagnosed chronic disease. Study information was disseminated through written flyers.
A series of semi-structured interviews were conducted using the participants preferred language. Demographic characteristics were collected in the first interview in a conversational manner. In the second interview, the researcher presented a case vignette that illustrated a patient and family members who were struggling about their discussions and decisions regarding advance directive and end of life care. In the third and last interview, participants were requested to provide feedback to the study including their acceptance and comfort level in participating in the study.
For this presentation, data sources included transcripts generated in the third interview and the researcher’s field notes. Content thematic analysis was conducted to identify themes regarding methodological and practical issues experienced by the participants as a result of their study participation (Braun & Clarke, 2006).
Results:
Recruitment/Retention
Nine older Korean US immigrants initially agreed to participate but only six (66%) signed the consent form. Reluctance to share their private stories with others, difficulties in finding time to schedule study interviews, and providing signatures in several documents were the reasons why three out of the nine participants declined to sign consent form. Of the six people who were consented, three (50%) completed all three interviews. Two participants withdrew from the study after the first interview, stating they did not want to share personal information anymore, and 1 participant withdrew because of time burden. All consented participants agreed to take part in the research study to primarily “help a student from the same country as themselves.” One participant agreed to participate because of the benefit of talking about her end of life care in advance and to help her think and express her opinion more clearly. Trust with the referral person was also the participants’ major motivation to participate in the study.
Language
Participants preferred to speak in Korean during interviews. They stated that they only used English to communicate about their daily lives and for work and they felt more comfortable to speak in Korean to express their feelings or opinions. One participant also described that since Korean was the language that he used in his early life, talking in Korean helped him to recall his old memories.
Emotional burden
Participants did not reveal any emotional distress during the interviews. One participant described that it was not a “delightful subject” but she recognized that talking was more beneficial than avoiding to talk about the issue. One participant described that she did not have emotional distress because of her religious belief. All of them addressed that even if they did not encounter emotional distress when talking about their end of life, they believed that many older Koreans would be reluctant to discuss this issue because of the discomfort or uneasy feeling related to death and terminal disease.
Interview method
Compared to completing a survey for a study, participants thought that the interview method made them more exposed to the researcher, whom they perceived as a “stranger”. Many participants were not convinced about anonymity and privacy of the information they shared with the researcher. Their fear of breach of privacy and confidentiality was compounded by the face-to-face interview and that the researcher will remember how they looked like and how they responded. In addition, using the word “interview” gave them the impression of talking formally, like interviews for newspaper or magazine. So some participants refused to participate saying “I am not good at talking stuff” or “I do not have a story to talk about”.
Cultural norm
Older Korean immigrants believed that a person who visits them should always be treated as a “guest”. Therefore, in addition to the worry and burden associated with participating in a study, they worried to have the researcher visited them at home as they had to treat her as a guest. Many participants refused to receive study reimbursement and also treated the researcher with snacks, lunch, and even tried to give some money to the researcher. Providing case vignette was not an effective method to investigate older Korean US immigrants’ opinions or perspectives in end of life. They all agreed that the case was possible to happen among older Korean US immigrants, but also hesitated to give opinions because this was someone else’s story. They believed that everyone’s life and situations are different.
Discussion
While discussing their opinions and perspectives about end of life care, participants also provided some suggestions to the researcher to improve study methodology. First suggestion was building a relationship with the participants. Since Korean immigrants are very private people, study participants believed that building a relationship with them and their community should be done first before they were approached to participate in the study. The second suggestion was to make the study procedures and documents as simple as possible. Since they were worried about potential scams, they were reluctant to provide their signatures on documents even after sufficient explanations.
The researcher had challenges in translating Korean into English. The researcher needed to change the sentence structure to translate because of different linguistic rules between Korean and English. In translation, rather than changing words, changing structure required the researcher to interpret the original meaning, which led to potential changes or modifications to the original meaning of sentences (Flaherty et al, 1988).
Conclusion:
In summary, methodological challenges exist when conducting research among ethnic minorities. Researchers should be prepared to address these challenges to encourage study participation in a meaningful way and to collect valid data from ethnic minorities.
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