Clinical trial NCT06024278: Developing and Testing Culturally Based Educational Videos for Puerto Rican and African American Home Hospice Caregivers
Official title: Developing and Pilot Testing Culturally Based Educational Videos for Puerto Rican and African American Home Hospice Caregivers
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Caregivers of Patients on Hospice Care
Lead sponsor: Weill Medical College of Cornell University
Sponsor class: OTHER
Collaborators: name: National Institute on Aging (NIA)
name: VNS Health
First posted: 2023-09-06
Enrollment: 20
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: NON_RANDOMIZED
Intervention model: PARALLEL
Primary purpose: TREATMENT

Brief summary: 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.

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.

Eligibility criteria: 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

Primary outcomes:
measure: Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
Secondary outcomes:
measure: Caregiver Preparedness Scale Score at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregiver Preparedness Scale Score at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Caregiving Competence Scale Score at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Caregiving Competence Scale Score at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Chronic Pain Self-Efficacy Scale at Pre-Intervention
timeFrame: Pre-intervention at Day 1
measure: Chronic Pain Self-Efficacy Scale at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention
timeFrame: Post-intervention at Day 1
measure: Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention
timeFrame: Post-intervention at Day 1
Other outcomes:
Locations:
city: New York
country: United States
facility: VNS Health
state: New York
city: Caguas
country: Puerto Rico
facility: Hospicio Luz Celeste
city: Manati
country: Puerto Rico
facility: Hospicio Toque De Amor
Study officials:
affiliation: Weill Medical College of Cornell University
name: Veerawat Phongtankuel, MD
role: PRINCIPAL_INVESTIGATOR
References: