Exploring the social and cultural aspects of Chinese family caregivers experience as they support loved ones with dementia transitioning into nursing homes: a qualitative study protocol

Study design

This study will use an exploratory qualitative research design with in-depth, semistructured interviews. Participant enrolment commenced in January 2024, and the data collection will occur throughout the year. The study protocol and all relevant materials have been approved by the UMass Chan Medical School Institutional Review Board (study ID: 00001376). The findings will be reported according to the consolidated criteria for reporting qualitative research (COREQ).28

Setting and participants

The study will be conducted with caregivers of older adults with dementia in families of Chinese descent (see eligibility criteria).

Convenience sampling will be used. In initial efforts to recruit eligible participants, the research team will contact Massachusetts-based community organisations, churches and caregiver support groups primarily serving the Chinese/Chinese American population, and recruitment materials will be distributed (eg, flyers). Recruitment materials will also be disseminated via local newspapers, social media sites (eg, WeChat (a communication tool widely used in Chinese populations)), Facebook/Instagram, X (formerly known as Twitter, Next Door, etc) and groups/forums designated for caregivers of people with dementia. The research team will reach out to local, Massachusetts-based nursing homes, home care agencies and clinics that predominantly serve the population of Chinese descent to help disseminate the recruitment information. Snowball sampling will also be used, with recruited participants asked to assist in disseminating the recruitment materials to other potential participants.

Initial recruitment will focus on Massachusetts-based organisations, given the location of the research team. If the recruitment is not satisfactory, other regions in the USA with a larger population of people of Chinese descent (eg, California, New York, etc) will be considered. All recruitment materials contain a hyperlink and QR code generated using the hyperlink. Potential participants are invited to use the link or scan the code to determine their eligibility for the study, which will take them to the screening questionnaire hosted in the Research Electronic Data Capture (REDCap).29 The screening questionnaire includes eligibility questions, caregiver demographics, contact information and information about their stage of decision-making (see online supplemental material 1).

Once the potential participant is deemed eligible, the research team will contact them by letter and email and will provide consent information using the project fact sheet. All files will be provided in English and Chinese (simplified and traditional). After 1 week, the research team will contact the potential participants via phone in their preferred language (English or Mandarin Chinese). During the phone call, the fact sheet (elements of consent) will be verbally reviewed with the caregiver, and then the caregiver will be asked for verbal consent. If verbal consent is voluntarily confirmed, the caregiver will be enrolled and may be scheduled for an interview. On completion of the interview, the participant will receive a US$50 gift card as a token to thank them for their time and effort.

Eligibility criteria

To be eligible for the in-depth interviews, the participants must be:

• Aged 18 years or older.

• Residing in the USA.

• Chinese or of Chinese descent.

• Mandarin Chinese-speaking or English-speaking.

• Currently providing care or have provided care in the past 5 years to older loved one(s) (aged 65 years and above; Chinese or of Chinese descent) with dementia.

• Have transitioned their loved ones with dementia to a US nursing home or have actively considered doing so.

• Willing to talk about their experiences and be audio-recorded.

• Willing to appear on camera (for Zoom interviews) and be recorded.

We will exclude the individuals who:

• Lack the capacity to provide consent.

• Are unable to participate in a 60–90 min interview.

• Do not pass the additional validity to ensure participants are genuine (see below).

To ensure the validity of the study and screen out potential imposter participants,30 once a Screening Questionnaire is completed with the potential participant meeting all eligibility criteria, we will further check for the following ‘red flags’.31 32 If at least three ‘red flags’ are identified, the participant will be excluded.

1. Large volume of Screening Questionnaires sign-ups received in a short period of time.

2. Timing of email receipt.

3. Similar email address format to others responding (eg, firstnamelastname ####@gmail.com).

4. Out-of-service or Google Voice phone numbers.

5. Similarity in the email message contents.

6. Rapidity of response when followed up to confirm certain information and schedule the interviews.

7. Incorrect or inconsistent responses.

8. Invalid postal addresses.

Data collection procedure

Interviews will last 60–90 min with an overall time commitment of approximately 2 hours. To prepare for in-depth interviews, enrolled caregiver participant characteristics (gender and the stage in transitioning a loved one with dementia into nursing homes) will be determined from the screening questionnaire. Interviews will be conducted following the interview protocol (see online supplemental material 2) in the participant’s preferred speaking language (English or Mandarin Chinese) and mode (in-person, via Zoom or phone) by trained bilingual interviewers (YY, EL, SX and SQ). Two research team members will join the interview, with one being the interviewer and the other being an observer taking notes. At the beginning of the interview, the participant will be asked to provide estimates of when they started thinking about nursing home care; started looking at different nursing home options; selected the nursing home and if and when they admitted their loved one to a nursing home.

Using standard qualitative research procedures, the interview incorporates a semistructured and open-ended approach.

Data to be collected during the interviews include:

1. Dual audio recordings of interviews (to be transcribed and translated).

2. Background questionnaire with additional sociodemographic characteristics (see online supplemental material 3). The background questionnaire will be collected at the end of the interview verbally, online, on the research laptop, or on paper, depending on the participant’s preference in the participants’ indicated language (English; simplified Chinese and traditional Chinese). Data will be stored using REDCap.

3. Observer’s notes.

After each interview, the interviewer and the observer will discuss their initial impressions. When necessary, the team will further refine the interview protocol based on insights from concurrent interviews to better address the research questions. The interview protocol will be adjusted as needed through team collaboration.

Data analysis

This is an exploratory qualitative study, and thus, power analysis requirements do not apply. We anticipate that 20 interview participants will be sufficient to reach saturation, which will be determined by consensus of the research team. If saturation is not achieved after 20 interviews, additional interviews will be conducted as needed.

For interviews conducted in English, the recordings will be first transcribed verbatim by NVivo Transcription, which is fully compliant with the Health Insurance Portability and Accountability Act of 1996 requirements for medical transcriptionists. Each transcript will be proofread by two research team members and finalised by the respective original interviewers. During this process, participant names will be replaced by participant numbers (namely, P1, P2, etc.), and any other identifiers will be redacted and replaced with generic role identifiers when appropriate (eg, sister, doctor, etc). The research team lead will conduct quality control procedures by reviewing all transcripts to ensure accuracy. For interviews conducted in Mandarin Chinese, the same transcription process will apply as NVivo Transcription supports transcription in Chinese.

A random subset of the interviews in both languages will be selected to develop the coding structure in English. Once the initial coding structure is developed by the research team, transcript texts will then be subjected to line-by-line coding in NVivo 14. Additional codes will be added as needed. Iterative data analysis employing thematic analysis will be conducted, and all transcripts will be subjected to line-by-line coding by two bilingual researchers in the original language of the interview. Any discrepancies will be discussed and resolved between the team members. Discrepancies that cannot be resolved by the two team members will be presented to the research group for a final resolution. The codebook will be modified by team consensus as new codes are identified. Code reports for each code will be generated and used to (1) facilitate further team analysis discussions, (2) develop links between themes, (3) finalise data interpretation and (4) identify supporting quotations. Searches for alternative interpretations will be conducted and discussed before final decisions are made about how to report the study findings. Consensus theme summaries and representative quotations from the in-depth interviews will then be used to finalise the findings.

Reflective practices

Throughout the study design, data collection through interviews and data analysis, the research team will actively reflect on and address their biases, ensuring they do not influence the research questions and the data being collected and analysed.

Patient and public involvement

None.

Ethics and dissemination

The study has been approved by the UMass Chan Medical School Institutional Review Board (ID: STUDY00001376). Findings will be published in peer-reviewed journals following the COREQ.