NCT05538481

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

A Prospective Study to Identify and Measure the Cultural Values and Palliative Care Preferences of Hindu Patients With Cancer and Their Caregivers

• Status: Withdrawn
• Phase: —
• Study type: Observational
• Enrollment: 0 (actual)
• Sponsor: Wake Forest University Health Sciences · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Not accepted

Summary

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.

Detailed 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.

Conditions

• Neoplasms

Interventions

Type	Name	Description
OTHER	Semi-structured interview	A collection of individual cultural values and palliative care preferences within the focus group meetings
OTHER	Developed survey completion	A collection of individual responses to a survey created after focus group completion and analysis
OTHER	Systems of Belief Inventory (SBI-15R)	A 15-item questionnaire designed to measure religious and spiritual beliefs and practices and the social support derived from a community sharing those beliefs.

Timeline

• Start date: 2023-06-01
• Primary completion: 2023-12-01
• Completion: 2024-06-01
• First posted: 2022-09-13
• Last updated: 2023-07-07

Locations

1 site across 1 country: United States