Caregivers of Patients on Hospice Care
Conditions
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.
Interventions
BEHAVIORALCaregiver educational videos for African American caregivers
The intervention will be culturally tailored education videos for African American caregivers receiving hospice services.
BEHAVIORALCaregiver educational videos for Puerto Rican caregivers
The intervention will be culturally tailored education videos for Puerto Rican caregivers receiving hospice services.
Sponsors
National Institute on Aging (NIA)
VNS Health
Weill Medical College of Cornell University
Study design
Allocation
NON_RANDOMIZED
Intervention model
PARALLEL
Primary purpose
TREATMENT
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (No knowledge) to 5 (Very knowledgeable) |
| Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Post-Intervention | Post-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
| Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Pre-Intervention | Pre-intervention at Day 1 | Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable) |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Caregiver Preparedness Scale Score at Post-Intervention | Post-intervention at Day 1 | 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. |
| Caregiving Competence Scale Score at Pre-Intervention | Pre-intervention at Day 1 | A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent) |
| Caregiving Competence Scale Score at Post-Intervention | Post-intervention at Day 1 | A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent) |
| Chronic Pain Self-Efficacy Scale at Pre-Intervention | Pre-intervention at Day 1 | A 22-item scale. Each question is rated on a Likert scale between 10 (very uncertain) to 100 (very certain). |
| Chronic Pain Self-Efficacy Scale at Post-Intervention | Post-intervention at Day 1 | A 22-item scale. Each question is rated on a Likert scale between 10 (very uncertain) to 100 (very certain). |
| Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Post-intervention at Day 1 | 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. |
| Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Post-intervention at Day 1 | 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. |
| Caregiver Preparedness Scale Score at Pre-Intervention | Pre-intervention at Day 1 | 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. |
Countries
Puerto Rico, United States
Participant flow
Participants by arm
| Arm | Count |
|---|---|
| African American Hospice Caregivers Culturally tailored educations videos will be administered to African American participants.
Caregiver educational videos for African American caregivers: The intervention will be culturally tailored education videos for African American caregivers receiving hospice services. | 10 |
| Puerto Rican Hospice Caregivers Culturally tailored educations videos will be administered to Puerto Rican participants.
Caregiver educational videos for Puerto Rican caregivers: The intervention will be culturally tailored education videos for Puerto Rican caregivers receiving hospice services. | 10 |
| Total | 20 |
Baseline characteristics
| Characteristic | Total | African American Hospice Caregivers | Puerto Rican Hospice Caregivers |
|---|---|---|---|
| Age, Continuous | 61.6 years STANDARD_DEVIATION 13.23 | 55 years STANDARD_DEVIATION 10.47 | 68.1 years STANDARD_DEVIATION 12.89 |
| Caregiving Responsibilities - Communicated with hospice providers on their care recipients' behalf | 20 Participants | 10 Participants | 10 Participants |
| Caregiving Responsibilities - Managed their care recipients' medications | 18 Participants | 8 Participants | 10 Participants |
| Caregiving Responsibilities - Managed their care recipients' symptoms | 18 Participants | 8 Participants | 10 Participants |
| Caregiving Responsibilities - Provided emotional support to their care recipient | 19 Participants | 10 Participants | 9 Participants |
| Caregiving Responsibilities - Provided personal care to their care recipient | 19 Participants | 9 Participants | 10 Participants |
| Ethnicity (NIH/OMB) Hispanic or Latino | 11 Participants | 1 Participants | 10 Participants |
| Ethnicity (NIH/OMB) Not Hispanic or Latino | 9 Participants | 9 Participants | 0 Participants |
| Ethnicity (NIH/OMB) Unknown or Not Reported | 0 Participants | 0 Participants | 0 Participants |
| Highest Education Completed 8th grade or less | 2 Participants | 0 Participants | 2 Participants |
| Highest Education Completed College Degree | 8 Participants | 5 Participants | 3 Participants |
| Highest Education Completed Graduate Degree | 4 Participants | 3 Participants | 1 Participants |
| Highest Education Completed High School or GED | 3 Participants | 1 Participants | 2 Participants |
| Highest Education Completed Some College | 3 Participants | 1 Participants | 2 Participants |
| Hours per day spent caregiving | 14.9 hours STANDARD_DEVIATION 8.77 | 9.33 hours STANDARD_DEVIATION 9.05 | 18.9 hours STANDARD_DEVIATION 6.62 |
| Race (NIH/OMB) American Indian or Alaska Native | 0 Participants | 0 Participants | 0 Participants |
| Race (NIH/OMB) Asian | 0 Participants | 0 Participants | 0 Participants |
| Race (NIH/OMB) Black or African American | 9 Participants | 9 Participants | 0 Participants |
| Race (NIH/OMB) More than one race | 7 Participants | 1 Participants | 6 Participants |
| Race (NIH/OMB) Native Hawaiian or Other Pacific Islander | 0 Participants | 0 Participants | 0 Participants |
| Race (NIH/OMB) Unknown or Not Reported | 0 Participants | 0 Participants | 0 Participants |
| Race (NIH/OMB) White | 4 Participants | 0 Participants | 4 Participants |
| Region of Enrollment Puerto Rico | 10 Participants | 0 Participants | 10 Participants |
| Region of Enrollment United States | 10 Participants | 10 Participants | 0 Participants |
| Relationship to Patient Child | 10 Participants | 7 Participants | 3 Participants |
| Relationship to Patient Other | 1 Participants | 0 Participants | 1 Participants |
| Relationship to Patient Relative | 3 Participants | 2 Participants | 1 Participants |
| Relationship to Patient Spouse/Partner | 6 Participants | 1 Participants | 5 Participants |
| Religion Baptist | 1 Participants | 1 Participants | 0 Participants |
| Religion Buddhist | 1 Participants | 1 Participants | 0 Participants |
| Religion Catholic | 3 Participants | 0 Participants | 3 Participants |
| Religion Christian | 4 Participants | 4 Participants | 0 Participants |
| Religion Evangelical | 4 Participants | 0 Participants | 4 Participants |
| Religion Non-denominational | 1 Participants | 1 Participants | 0 Participants |
| Religion Not religious but spiritual | 1 Participants | 1 Participants | 0 Participants |
| Religion Not religious nor spiritual | 3 Participants | 1 Participants | 2 Participants |
| Religion Pentecostal | 1 Participants | 0 Participants | 1 Participants |
| Religion Protestant | 1 Participants | 1 Participants | 0 Participants |
| Sex: Female, Male Female | 16 Participants | 8 Participants | 8 Participants |
| Sex: Female, Male Male | 4 Participants | 2 Participants | 2 Participants |
Adverse events
| Event type | EG000 affected / at risk | EG001 affected / at risk |
|---|---|---|
| deaths Total, all-cause mortality | 0 / 10 | 0 / 10 |
| other Total, other adverse events | 0 / 10 | 0 / 10 |
| serious Total, serious adverse events | 0 / 10 | 0 / 10 |
Outcome results
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Post-Intervention | 2.7 score on a scale | Standard Deviation 1.49 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Pre-Intervention | 1.7 score on a scale | Standard Deviation 1.06 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention | 3.2 score on a scale | Standard Deviation 1.4 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention | 2.9 score on a scale | Standard Deviation 1.45 |
Primary
Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Post-Intervention
Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Post-Intervention | 4.2 score on a scale | Standard Deviation 0.79 |
Primary
Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Pre-Intervention
Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Pre-Intervention | 4.1 score on a scale | Standard Deviation 0.88 |
Primary
Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Post-Intervention
Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Post-Intervention | 3.7 score on a scale | Standard Deviation 1.34 |
Primary
Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Pre-Intervention
Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Pre-Intervention | 3.5 score on a scale | Standard Deviation 1.58 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Post-Intervention | 4.1 score on a scale | Standard Deviation 0.74 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention | 3.0 score on a scale | Standard Deviation 1.15 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Post-Intervention | 3.5 score on a scale | Standard Deviation 1.51 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Pre-Intervention | 3.0 score on a scale | Standard Deviation 1.49 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Post-Intervention | 3.0 score on a scale | Standard Deviation 1.7 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention | 3.1 score on a scale | Standard Deviation 1.29 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Post-Intervention | 4.0 score on a scale | Standard Deviation 1.41 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Pre-Intervention | 3.2 score on a scale | Standard Deviation 1.81 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Post-Intervention | 4.0 score on a scale | Standard Deviation 0.94 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Pre-Intervention | 3.9 score on a scale | Standard Deviation 1.1 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Post-Intervention | 4.4 score on a scale | Standard Deviation 0.84 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Pre-Intervention | 4.4 score on a scale | Standard Deviation 0.7 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Post-Intervention | 4.5 score on a scale | Standard Deviation 0.53 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Pre-Intervention | 3.2 score on a scale | Standard Deviation 1.32 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Post-Intervention | 4.6 score on a scale | Standard Deviation 0.52 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Pre-Intervention | 3.9 score on a scale | Standard Deviation 1.37 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Post-Intervention | 4.0 score on a scale | Standard Deviation 1.15 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| Puerto Rican Hospice Caregivers | Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Pre-Intervention | 3.3 score on a scale | Standard Deviation 1.57 |
Primary
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)
Time frame: Post-intervention at Day 1
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Post-Intervention | 4.4 score on a scale | Standard Deviation 0.7 |
| Puerto Rican Hospice Caregivers | Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Post-Intervention | 3.2 score on a scale | Standard Deviation 1.14 |
Primary
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)
Time frame: Pre-intervention at Day 1
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Pre-Intervention | 2.9 score on a scale | Standard Deviation 1.6 |
| Puerto Rican Hospice Caregivers | Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Pre-Intervention | 3.1 score on a scale | Standard Deviation 1.29 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention | 4.6 score on a scale | Standard Deviation 0.7 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention | 4.1 score on a scale | Standard Deviation 0.88 |
Primary
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)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Post-Intervention | 4.6 score on a scale | Standard Deviation 0.7 |
Primary
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)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Pre-Intervention | 4.1 score on a scale | Standard Deviation 1.66 |
Secondary
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.
Time frame: Post-intervention at Day 1
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregiver Preparedness Scale Score at Post-Intervention | 28.3 score on a scale | Standard Deviation 3.62 |
| Puerto Rican Hospice Caregivers | Caregiver Preparedness Scale Score at Post-Intervention | 26.6 score on a scale | Standard Deviation 4.01 |
Secondary
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.
Time frame: Pre-intervention at Day 1
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregiver Preparedness Scale Score at Pre-Intervention | 23.5 score on a scale | Standard Deviation 6.36 |
| Puerto Rican Hospice Caregivers | Caregiver Preparedness Scale Score at Pre-Intervention | 24.1 score on a scale | Standard Deviation 6.19 |
Secondary
Caregiving Competence Scale Score at Post-Intervention
A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent)
Time frame: Post-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregiving Competence Scale Score at Post-Intervention | 14.3 score on a scale | Standard Deviation 2.06 |
Secondary
Caregiving Competence Scale Score at Pre-Intervention
A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent)
Time frame: Pre-intervention at Day 1
Population: Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Value (MEAN) | Dispersion |
|---|---|---|---|
| African American Hospice Caregivers | Caregiving Competence Scale Score at Pre-Intervention | 13.8 score on a scale | Standard Deviation 2.15 |
Secondary
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).
Time frame: Post-intervention at Day 1
Population: Data was not collected for this measure.
Secondary
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).
Time frame: Pre-intervention at Day 1
Population: Data was not collected for this measure.
Secondary
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.
Time frame: Post-intervention at Day 1
Population: 10 African American caregiver participants watched 4 Videos tailored for African American home hospice caregivers and provided qualitative feedback on whether each video was helpful in improving their knowledge and comfort in caregiving.~Per protocol, this measure was analyzed only for the African American hospice caregivers.
| Arm | Measure | Group | Value (COUNT_OF_PARTICIPANTS) |
|---|---|---|---|
| African American Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Video 1 (tailored for African American caregivers) improvement on caregivers' knowledge and comfort | 9 Participants |
| African American Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Video 2 (tailored for African American caregivers) improvement on caregivers' knowledge and comfort | 9 Participants |
| African American Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Video 3 (tailored for African American caregivers) improvement on caregivers' knowledge and comfort | 9 Participants |
| African American Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Video 4 (tailored for African American caregivers) improvement on caregivers' knowledge and comfort | 9 Participants |
| Puerto Rican Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Video 4 (tailored for African American caregivers) improvement on caregivers' knowledge and comfort | 0 Participants |
| Puerto Rican Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Video 1 (tailored for African American caregivers) improvement on caregivers' knowledge and comfort | 0 Participants |
| Puerto Rican Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Video 3 (tailored for African American caregivers) improvement on caregivers' knowledge and comfort | 0 Participants |
| Puerto Rican Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention | Video 2 (tailored for African American caregivers) improvement on caregivers' knowledge and comfort | 0 Participants |
Secondary
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.
Time frame: Post-intervention at Day 1
Population: 10 Puerto Rican caregiver participants watched 4 Videos tailored for Puerto Rican home hospice caregivers and provided qualitative feedback on whether each video was helpful in improving their knowledge and comfort in caregiving.~Per protocol, this measure was analyzed only for the Puerto Rican hospice caregivers.
| Arm | Measure | Group | Value (COUNT_OF_PARTICIPANTS) |
|---|---|---|---|
| African American Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Video 1 (tailored for Puerto Rican caregivers) improvement on caregivers' knowledge and comfort | 0 Participants |
| African American Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Video 2 (tailored for Puerto Rican caregivers) improvement on caregivers' knowledge and comfort | 0 Participants |
| African American Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Video 3 (tailored for Puerto Rican caregivers) improvement on caregivers' knowledge and comfort | 0 Participants |
| African American Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Video 4 (tailored for Puerto Rican caregivers) improvement on caregivers' knowledge and comfort | 0 Participants |
| Puerto Rican Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Video 4 (tailored for Puerto Rican caregivers) improvement on caregivers' knowledge and comfort | 8 Participants |
| Puerto Rican Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Video 1 (tailored for Puerto Rican caregivers) improvement on caregivers' knowledge and comfort | 8 Participants |
| Puerto Rican Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Video 3 (tailored for Puerto Rican caregivers) improvement on caregivers' knowledge and comfort | 8 Participants |
| Puerto Rican Hospice Caregivers | Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention | Video 2 (tailored for Puerto Rican caregivers) improvement on caregivers' knowledge and comfort | 8 Participants |