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

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: Completed
• Conditions: Caregivers of Patients on Hospice Care
• Intervention / Treatment: Behavioral: Caregiver educational videos for African American caregivers; Behavioral: Caregiver educational videos for Puerto Rican caregivers

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 (Actual): 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: Non-Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

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

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Pre-intervention at Day 1
Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Post-intervention at Day 1
Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Pre-intervention at Day 1
Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Post-intervention at Day 1
Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Pre-intervention at Day 1
Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Post-intervention at Day 1
Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Pre-intervention at Day 1
Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Post-intervention at Day 1
Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Pre-intervention at Day 1
Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Post-intervention at Day 1
Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Pre-intervention at Day 1
Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Post-intervention at Day 1
Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Pre-intervention at Day 1
Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Post-intervention at Day 1
Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Pre-intervention at Day 1
Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Post-intervention at Day 1
Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Pre-intervention at Day 1
Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Post-intervention at Day 1
Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Pre-intervention at Day 1
Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Post-intervention at Day 1
Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Pre-intervention at Day 1
Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Post-intervention at Day 1
Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Pre-intervention at Day 1
Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Post-intervention at Day 1
Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Pre-intervention at Day 1
Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Post-intervention at Day 1
Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Pre-intervention at Day 1
Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Post-intervention at Day 1
Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Pre-intervention at Day 1
Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)	Post-intervention at Day 1
Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Pre-intervention at Day 1
Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention	Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)	Post-intervention at Day 1

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Caregiver Preparedness Scale Score at Pre-Intervention	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-intervention at Day 1
Caregiver Preparedness Scale Score at Post-Intervention	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.	Post-intervention at Day 1
Caregiving Competence Scale Score at Pre-Intervention	A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent)	Pre-intervention at Day 1
Caregiving Competence Scale Score at Post-Intervention	A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent)	Post-intervention at Day 1
Chronic Pain Self-Efficacy Scale at Pre-Intervention	A 22-item scale. Each question is rated on a Likert scale between 10 (very uncertain) to 100 (very certain).	Pre-intervention at Day 1
Chronic Pain Self-Efficacy Scale at Post-Intervention	A 22-item scale. Each question is rated on a Likert scale between 10 (very uncertain) to 100 (very certain).	Post-intervention at Day 1
Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention	Open ended interviews will be conducted to obtain participant feedback around content, attitudes, usefulness and limitations of the videos. Participants will answer questions asking if each video was helpful in improving their knowledge and comfort with managing their care recipient's symptoms. Video 1 includes content on managing shortness of breath, delivering liquid medication to a patient, and caregiver resources offered in hospice care. Video 2 includes content on using opioids to treat pain and turning a patient in bed. Video 3 includes content on recognizing agitation and confusion in a patient. Video 4 includes content on recognizing the signs and symptoms when a patient is at the end of life.	Post-intervention at Day 1
Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention	Open ended interviews will be conducted to obtain participant feedback around content, attitudes, usefulness and limitations of the videos. Participants will answer questions asking if each video was helpful in improving their knowledge and comfort with managing their care recipient's symptoms. Video 1 includes content on managing shortness of breath related to anxiety, using opioids to ease shortness of breath, and spiritual resources offered in hospice care. Video 2 includes content on managing nausea, managing constipation, and recognizing caregiver stress. Video 3 includes content on coping with lack of appetite for someone at the end of life. Video 4 includes content on making financial preparations at the end of life, managing agitation and confusion, and recognizing end-of-life signs and symptoms.	Post-intervention at 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 (Actual): February 22, 2024
• Study Completion (Actual): February 22, 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): December 11, 2024
• Last Update Submitted That Met QC Criteria: November 15, 2024
• Last Verified: November 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