Study to Identify and Measure the Values and Palliative Care Pref. of Hindu Patients and Their Caregivers

Wake Forest University (WFU)

Status: Withdrawn

Conditions: Neoplasms

Treatments: Other: Developed survey completion; Other: Semi-structured interview; Other: Systems of Belief Inventory (SBI-15R)

Study type: Observational

Funder types: Other

Identifiers

NCT05538481

LCI-SUPP-NOS-HCV-001 (Other Identifier)

IRB00085986

Details and patient eligibility

About

Historically, palliative care in the US has been rooted in the cultural values of a Caucasian, Christian middle class. Greater understanding of how culture influences the delivery of palliative care to minority patients is needed to achieve health equity.

The purpose of this study is to learn more about the cultural values (Hindu customs and beliefs) and palliative care (specialized care for people living with a serious illness) preferences of the Hindu community. To the study team's knowledge, there has not been another study that has used a research approach to help better understand and measure the cultural values and palliative care preferences of Hindu participants with cancer and their caregivers.

Full description

This is a cross-sectional study of Hindu patients with cancer in Charlotte and surrounding areas and their Hindu caregivers. This study will use the methods and principles of Community-based participatory research (CBPR).

Before enrollment of participants, a Community Advisory Group (CAG) will be formed, which represents the Hindu community's perspective in the research project and facilitates interactions with Hindu patients with cancer and caregivers. The CAG will be composed of 8-10 members, including healthcare professionals, leaders, patients with cancer, and their caregivers - identified by members from three Hindu institutions, Bochasanwasi Shri Akshar Purushottam Swaminarayan Sanstha (BAPS), Hindu Center of Charlotte, and Trimurti Temple Devasthanam, in Charlotte and surrounding areas. Charlotte is one of the two areas in NC with the fastest growing Indian population. The role of the CAG is to provide input throughout both parts of the study.

There will be two cohorts of patients with cancer/caregivers: 1) focus group cohort and 2) cognitive interview cohort. Data about cultural values and palliative care preferences collected from focus group participants (Cohort 1) will be analyzed using an inductive thematic analysis approach and will be used for survey development. The survey will be validated with cognitive interviews (Cohort 2). After any needed modifications, the final survey will be created and presented to all study participants. All of the study participants will also have the opportunity to review the survey to ensure that the questions reflect their real-world experiences. The investigators hypothesize that this final survey will be an effective tool to measure the cultural values and palliative care preferences of Hindu patients and their caregivers.

Participants will be enrolled over approximately 12 months.

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

1. Verbal informed consent by the patient or caregiver

2. Age ≥ 18 years at the time of consent

3. Participants must be a cancer patient or caregiver and/or:

   • Self-identified Hindu
   • Cancer patients must have received most of their cancer care in Charlotte and surrounding areas within the past 5 years from enrollment
   • Caregivers must be caring for a patient who meets the above criteria and is too ill to participate or cared for a cancer patient who met the above criteria but died within the past 5 years from enrollment

4. Ability to read, speak, and understand English

5. As determined by the enrolling investigator, the ability of the participant to understand and comply with study procedures for the entire length of the study

Exclusion criteria

1. Lack of access to the technology required to attend virtual meetings and complete study surveys electronically (e.g., internet in home setting)

Trial design

0 participants in 2 patient groups

Focus Group

Description:

A total of 16 participants, including patients and caregivers, will be enrolled for 2 focus groups (group of 8 patients with cancer and group of 8 caregivers).

Treatment:

Other: Systems of Belief Inventory (SBI-15R)

Other: Semi-structured interview

Cognitive Interviews Group

Description:

A total of up to 30 participants will be enrolled in this cohort, and up to 3 rounds of cognitive interviews will be conducted. This cohort of participants will be enrolled after survey development based on the themes identified from the focus group analyses.

Treatment:

Other: Systems of Belief Inventory (SBI-15R)

Other: Developed survey completion