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Completed

NCT Number: NCT06024278

Developing and 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.

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Key information

Conditions

Caregivers of Patients on Hospice Care

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Hospicio Toque De Amor, Manati, PR, Puerto Rico

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About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Caregiver educational videos for African American caregivers

Behavioral

The intervention will be culturally tailored education videos for African American caregivers receiving hospice services.

Caregiver educational videos for Puerto Rican caregivers

Behavioral

The intervention will be culturally tailored education videos for Puerto Rican caregivers receiving hospice services.

Primary outcomes

  1. Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  2. Caregivers' Comfort in Managing Shortness of Breath as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  3. Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  4. Caregivers' Knowledge in Delivering Liquid Medication as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  5. Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  6. Caregivers' Knowledge in Caregiver Resources in Hospice as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  7. Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  8. Caregivers' Comfort in Using Opioids to Treat Pain as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  9. Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  10. Caregivers' Knowledge in Turning a Patient in Bed as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  11. Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  12. Caregivers' Knowledge in Recognizing Patients' Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  13. Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  14. Caregivers' Knowledge in Recognizing End-of-life Signs and Symptoms as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  15. Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  16. Caregivers' Comfort in Managing Shortness of Breath Related to Anxiety as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  17. Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  18. Caregivers' Knowledge About Spiritual Resources in Hospice Care as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  19. Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  20. Caregivers' Comfort in Using Opioids Like Morphine to Help Ease Shortness of Breath as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  21. Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  22. Caregivers' Comfort in Managing Nausea as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  23. Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  24. Caregivers' Comfort in Managing Constipation as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  25. Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  26. Caregivers' Knowledge About Recognizing Caregiver Stress as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  27. Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  28. Caregivers' Comfort in Coping With Lack of Appetite for Someone at the End of Life as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  29. Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  30. Caregivers' Knowledge in Making Financial Preparations at the End of Life as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (No knowledge) to 5 (Very knowledgeable)

  31. Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

  32. Caregivers' Comfort in Managing Agitation and Confusion as Assessed by a Likert Scale at Post-Intervention

    Time frame: Post-intervention at Day 1

    Question ranges from 1 (Extremely uncomfortable) to 5 (Very comfortable)

Secondary outcomes

  1. Caregiver Preparedness Scale Score at Pre-Intervention

    Time frame: 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.

  2. Caregiver Preparedness Scale Score at Post-Intervention

    Time frame: 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.

  3. Caregiving Competence Scale Score at Pre-Intervention

    Time frame: Pre-intervention at Day 1

    A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent)

  4. Caregiving Competence Scale Score at Post-Intervention

    Time frame: Post-intervention at Day 1

    A 4-item scale. Each question ranges from 1 (Not at all competent) to 4 (Very competent)

  5. Chronic Pain Self-Efficacy Scale at Pre-Intervention

    Time frame: 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).

  6. Chronic Pain Self-Efficacy Scale at Post-Intervention

    Time frame: 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).

  7. Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for African American Hospice Caregivers Was Helpful at Post-Intervention

    Time frame: 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.

  8. Number of Participants Who Provided Qualitative Feedback That Each Video Culturally Tailored for Puerto Rican Hospice Caregivers Was Helpful at Post-Intervention

    Time frame: 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.

Sponsors and collaborators

Lead sponsor

Weill Medical College of Cornell University

Other

Collaborators

  • National Institute on Aging (NIA)
  • VNS Health

Registry information

Official study title

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

Important dates

Study start
2023
Primary completion
2024
Study completion
2024
First posted
Sep 6, 2023
Registry last updated
Dec 11, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.