Developing and Pilot Testing Culturally Based Educational Videos for Puerto Rican and African American Home Hospice Caregivers

The investigators hypothesize that culturally based educational videos for Puerto Rican and African American home hospice caregivers will better inform caregivers in managing symptoms, preparedness, self-efficacy, and competence.

Study Overview

• Status: Enrolling by invitation
• Conditions: Caregivers of Patients on Hospice Care
• Intervention / Treatment: Behavioral: Caregiver educational videos

Detailed Description

The clinical trial for this project is a cross-sectional study conducted with VNS Health hospice, Hospicio Toque de Amor, and Hospicio Luz Celeste. Names of Puerto Rican and African American caregivers receiving home hospice care will be referred to the study team by the site leader/hospice leadership at each hospice. Demographic data will be collected from each caregiver participant. Prior to showing participants the culturally tailored videos, a research member will administer a set of Likert style questions developed by the research team around comfort in managing symptom related issues. The same questions will be administered again post video intervention. In addition, the preparedness scale, chronic pain self-efficacy scale, and caregiving competence scale will be administered to participants pre and post video intervention. The PI will not be involved in the administering the intervention for this study. After the culturally tailored videos have been shown to the participant, a research member will also conduct an open-ended interview about content, reactions, attitudes, usefulness and limitations around each video. Interviews will be conducted in either English and/or Spanish.

• Study Type: Interventional
• Enrollment (Estimated): 20
• Phase: Not Applicable

Contacts and Locations

Study Locations

• Puerto Rico
  • Caguas, Puerto Rico, 00725
    • Hospicio Luz Celeste
  • Manati, Puerto Rico, 00674
    • Hospicio Toque De Amor
• United States
  • New York
    • New York, New York, United States, 10017
      • VNS Health

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

Description

Inclusion Criteria:

• Family caregivers who identify themselves as Puerto Rican or African American
• English and/or Spanish speaking
• 18 year of age or older
• Currently receiving home hospice services with a patient

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Treatment
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Hospice Caregivers; Culturally tailored educations videos will be administered to participants.	Behavioral: Caregiver educational videos; The intervention will be culturally tailored education videos for caregivers receiving hospice services.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in caregivers' comfort in managing symptom related issues using a Likert scale	1 is extremely uncomfortable and 5 is very comfortable	Pre-test and post-test (Day 1)

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Change in Caregiver Preparedness Scale	An 8-item scale. Each question ranges from 0 (Not at all prepared) to 4 (Very well prepared). Total score can range from 0 to 32 with higher scores are indicative of feeling better prepared for the caregiving role.	Pre-test and post-test (Day 1)
Change in Caregiving Competence Scale	A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent)	Pre-test and post-test (Day 1)
Change in Chronic Pain Self-Efficacy Scale	A 22-item scale. Each question is rated on a Likert scale between 10 (very uncertain) to 100 (very certain).	Pre-test and post-test (Day 1)
Qualitative feedback on videos	Open ended interview will be conducted to obtain participant feedback around content, attitudes, usefulness and limitations of the videos.	Post-test (Day 1)

Collaborators and Investigators

• Sponsor: Weill Medical College of Cornell University
• Collaborators: National Institute on Aging (NIA); VNS Health
• Investigators: Principal Investigator: Veerawat Phongtankuel, MD, Weill Medical College of Cornell University

Study record dates

Study Major Dates

• Study Start (Actual): June 5, 2023
• Primary Completion (Estimated): March 1, 2024
• Study Completion (Estimated): March 1, 2024

Study Registration Dates

• First Submitted: August 29, 2023
• First Submitted That Met QC Criteria: August 29, 2023
• First Posted (Actual): September 6, 2023

Study Record Updates

• Last Update Posted (Estimated): January 26, 2024
• Last Update Submitted That Met QC Criteria: January 25, 2024
• Last Verified: January 1, 2024

More Information

Terms related to this study

• Other Study ID Numbers: 22-04024661; 3K76AG059997-03S1 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No