For aim 1, we will conduct a qualitative content analysis to understand the experiences of religious or spiritual leaders and facilitate the development of the intervention prototype. The research gap in understanding ACP from the perspective of religious or spiritual leaders led to the following research question: What are the barriers and facilitators experienced by religious or spiritual leaders, including chaplains, when addressing ACP or death-related issues with Chinese Americans in Chicago? Religious or spiritual leaders play a key role as authority figures in providing spiritual care to Chinese Americans, especially following a diagnosis of serious chronic disease [16]. We will use snowball sampling to recruit 10 religious or spiritual leaders to participate in semistructured interviews, meeting the suggested minimum sample size needed to reach saturation in qualitative research [39]. Religious or spiritual leaders, regardless of their affiliation, will be eligible for inclusion in the study if they (1) are aged 18 years and older; (2) serve as a chaplain, pastor, or monk at a health care setting or religious organization in Chicago; (3) have experience providing pastoral or spiritual care to Chinese Americans living in Chicago; and (4) are able to read and respond to questions in English or Mandarin. Religious or spiritual leaders will be excluded from the study if they are not willing to provide consent.

For the snowball sampling, the recruitment chain will begin with 1 chaplain and 2 pastors in the Chicago region. Considering the potential bias from snowball sampling, we will purposefully select the first 3 religious or spiritual leaders who do not have a prior relationship with the interviewer (LL). Religious or spiritual leaders will be contacted by phone or email to arrange a meeting at their preferred location and mode (either in-person or via videoconference call on Zoom [Zoom Video Communications]). During initial contact, a research team member will use a telephone script to determine if the potential participant meets the eligibility criteria. Those eligible will be given an informed consent form in either paper-and-pencil or electronic format to provide the purpose, procedures, benefits, and risks of the study. Participants will be given time to review the consent form and will be encouraged to ask questions or express any concerns about the study. In addition, they will be informed that the interview will be audio and video recorded to document their verbal and nonverbal communication, including voice, tone of voice, facial expressions, gestures, body language, and posture. After consent is obtained, participants will be asked to provide their demographic information at the start of the interview. Then, a 40- to 45-minute, one-on-one, semistructured interview will proceed to ensure a rich and detailed insight into participants’ experiences by asking the following open-ended questions: “Tell me about your end-of-life discussions with Chinese Americans living in Chicago”; “What barriers did you encounter when you addressed ACP and/or death-related topics with Chinese Americans?”; “Tell me about the strategies you used for ACP discussions and death-related issues”; and “Tell me about your experiences in providing end-of-life education to Chinese Americans.” As one of the strategies to enhance credibility, participants will be encouraged to provide examples to support their statements regarding barriers and facilitators [40]. At the end of each interview, participants will be asked to identify other religious or spiritual leaders who have similar experiences providing spiritual care to Chinese Americans in Chicago. On interview completion, each participant will receive US $50 (cash or gift card) for their time and effort. To further enhance credibility, each participant will be contacted again with an opportunity to review their own transcripts and the interpretation of the interview data and provide feedback [40]. We have already planned for the recruitment of 10 religious or spiritual leaders, with the possibility of continuing as needed until data saturation is achieved.

To identify barriers and facilitators of ACP, all interviews will be transcribed verbatim and entered into NVivo 14 qualitative data analysis software (Lumivero). At the beginning of the content analysis, we will use an iterative process of reading transcripts to confirm their accuracy and enhance immersion in the data [41]. The first author (LL) will analyze the qualitative data using the 6-stage framework method while developing an analytical framework. The initial analytical framework will consist of two categories: (1) barriers to death and dying discussions encountered by Chinese Americans, and (2) facilitators used by religious or spiritual leaders. Under the barriers category, predefined codes will be developed based on previous literature, including cultural beliefs, indirect communication, fear, lack of knowledge, language barriers for health care, and others. Codes under the facilitators category will be derived from the open coding process [41].

The first author will then read 2 transcripts to pilot-test the codes and revise the analytical framework should any new codes arise during this process. She will then independently read the remaining 8 transcripts and highlight all text deemed to address barriers to or facilitators of end-of-life discussions. The third author (CT) will independently code line-by-line. After the first round of coding, the authors will discuss the initial analytical framework, use interrater coding tools to compare coding differences, reconcile any disagreements, and recode the transcripts if needed. Throughout this process, we will practice reflexivity by keeping a reflexive journal, conducting peer debriefing, and engaging in critical self-reflection [42]. The first author, who will conduct all interviews, will also specifically assess whether her religious affiliation may influence the research process, including data collection and analysis.

After completing the data analysis, we will assess the necessity of recruiting additional participants based on the consensus regarding the barriers and facilitators encountered by the 10 participants. Recruitment will cease when data saturation is achieved (ie, no further addition of information) [39]. Then, we will contact the participants and share the final interpretation of data with them for clarification, feedback, and accuracy of the data interpretation, which will then be used to refine the proposed intervention. When reporting and disseminating the findings, we will use the Joanna Briggs Institute checklist for qualitative research to ensure transferability, providing a detailed description of the research process that readers will be able to apply to their own populations and settings [40].

For aim 2, we will conduct a survey to understand the readiness of Chinese Americans to participate in ACP discussions with their family. Participants will be recruited from Chinese community events in Chicago. We will recruit 100 Chinese Americans who (1) are aged 18 years and older; (2) are able to read and respond to questions in English or Mandarin; and (3) self-identify as first- or second-generation Chinese Americans.

We will approach potential participants at events specifically organized for Chinese Americans in Chicago. We will use a research information sheet to introduce the study to any potential participants we meet during the events. If they express interest in participating in the study, they will be encouraged to thoroughly read the information sheet and ask any questions they may have. After providing their verbal consent, they will proceed to complete the 34-item paper-and-pencil Chinese or English version of the ACP Engagement Survey, which assesses 4 behavior change constructs, including knowledge, contemplation, self-efficacy, and readiness within 4 ACP domains [43]. In addition, they will be asked to complete a demographic survey regarding their educational attainment, marital status, and employment status. They will also be invited to provide their contact information if they have any interest in participating in future research studies focusing on Chinese Americans.

Descriptive statistics, including frequencies, percentages, means, and SD, will be performed to describe the participants’ demographic characteristics and their readiness for ACP discussions.

For aim 3, we will conduct think-aloud interviews to refine a culturally tailored, resilience-building intervention developed for and with Chinese Americans with cancer or heart disease and collect feedback on the intervention’s content. Patients and family caregivers will be recruited from 2 hospitals in Chicago, which serve at least 150 Chinese Americans with cancer or heart disease every year. We will use convenience sampling to recruit 18 pairs of patients and family caregivers (9 pairs each for cancer and heart disease; N=36) for think-aloud interviews. Patients will be eligible for the think-aloud interviews if they (1) are aged 18 years and older; (2) have a cancer or heart failure diagnosis documented in the electronic medical record; (3) are able to read and respond to questions in English or Mandarin; and (4) have a family caregiver who is responsible for the care and willing to participate in the study. Family caregivers will be eligible if they are (1) aged 18 years and older; (2) able to read and respond to questions in English or Mandarin; and (3) identified by the patient as a family caregiver. Patients who (1) have cognitive impairment per a Short Portable Mental Status Questionnaire with more than three errors; (2) have received heart transplantation or a left ventricular assist device; (3) have completed an advance directive; or (4) were born in the United States will be excluded from the study.

For aim 3, after approval by the affiliated IRBs, we will request a list of potential participants who are aged 18 years or older and have cancer or heart failure diagnosis documented in the electronic medical record from each hospital. Our recruitment process will begin by sending potential patient participants an introductory email. Following the email, we will wait for a period of 2 weeks before initiating contact with them via telephone. For individuals who have only a telephone number as contact information, we will initiate a phone call to inquire about their interest in participating in the study using a telephone script. If they express interest in participating during our initial contact through email or phone call, we will use the Short Portable Mental Status Questionnaire to assess cognitive function. After the screening, we will inform eligible participants that a family caregiver responsible for their care is required in order to participate in the study. They have the option to either provide us with the contact information of their family caregiver or have their family caregiver contact us directly through email or phone. For those who share the contact information with us, we will first recruit their family caregiver by sending an email. We will then wait for 2 weeks before initiating contact via telephone. For family caregivers who only have a telephone number as their contact information, we will initiate a phone call to inquire about their interest in participating in the study and screen for their eligibility. Eligible participants will then be given a brief description of the research and asked if they wish to learn more. If they agree, a 1-hour usability test will be arranged at a time convenient for both the patient and the identified family caregiver to meet a research team member at the University of Illinois Chicago College of Nursing Behavioral Research Core Laboratory.

Prior to the usability test, participants will first be asked to review the consent form with a research team member. They will be encouraged to ask questions they may have regarding the study during this process. Once we receive their consent, we will proceed with the 1-hour usability test. Participants will be provided with a survey regarding their demographic information, a copy of the Chinese version of Five Wishes, and a resilience-building guide. While participants are reading the guide, we will encourage them to verbalize their impressions of the guide and activities. The think-aloud interviews will be audio and video recorded, along with their facial expressions and movements. Participants’ responses and expressions will be used for later refinement of the intervention. To assess the acceptability of the intervention, each participant, at the end of each interview, will be asked to complete the Theoretical Framework of Acceptability. The constructs included in the Theoretical Framework of Acceptability are affective attitude, burden, ethicality, opportunity costs, intervention coherence, perceived effectiveness, and self-efficacy, which can help us assess the acceptability of the intervention during both its development and modification [44]. On interview completion, each patient and family caregiver will receive US $50 in cash (a total of US $100 per pair) for their time and effort.

The culturally tailored, resilience-building intervention prototype will be evaluated and refined upon completion of each group of 3 patient and family caregiver pairs. Appropriate changes will be implemented based on the input and responses from the Theoretical Framework of Acceptability. The resilience-building guide will undergo a review by IRB before each subsequent round of participants reviews it for any changes made.

Data obtained through the think-aloud interviews will be transcribed verbatim; summative content analysis will be used to identify any recurrent issues. Two members of the research team will independently review the transcripts and document the occurrences of the issues. The findings will be compared until a consensus is reached between the 2 team members. All issues identified during each round of think-aloud interviews and the responses from the Theoretical Framework of Acceptability will be discussed based on the categories of the MoSCoW (Must Have, Should Have, Could Have, and Will Not Have) criteria [45]. The research team will use the MoSCoW criteria to help prioritize the necessary modifications needed, which can ensure that the intervention provides understandable and meaningful information. These modifications will contribute to a revised version of the culturally tailored, resilience-building intervention that leads to the completion of an advance directive to be optimized in the second phase of MOST.

Descriptive statistics will be calculated to assess the acceptability of the intervention through the Theoretical Framework of Acceptability. Study feasibility will be examined through (1) the number of potential patient participants who approached, screened, and consented for the aim 3 think-aloud interviews; (2) reasons for refusal to participate; (3) characteristics of the patients and family caregivers who consented versus those who refused; (4) the number of patients and family caregivers who visited the Behavioral Research Core Laboratory for the think-aloud interviews; (5) the number of tasks completed for each module during the think-aloud interviews; (6) the number of participant reminder calls completed; and (7) the facilitators and barriers to implementation and how they were addressed.