Caregiving While Black

NCT05772689 | Recruiting

• 1 other identifier: STUDY00004305
• Study Type: interventional
• Target: 140
• Locations: 1 country
• Sites: 1

Brief Summary

The goal of this project is to revise and test an online education program designed to enhance the mastery of Black American caregivers to provide care to family members or friends living with a dementia illness. This study has two phases, and participants will take part in Phase 1 and/or Phase 2 of this study. Participants will take part in one and/or both phases in this study if they are a caregiver to a person living with dementia. Caregivers must self-identify as Black American and as the unpaid principal caregiver of a community-dwelling person living with a dementia illness and who is the principal companion of that person during healthcare encounters. Caregivers must also be 18 years of age or older and will be providing at least some hands-on care multiple times a week, if not daily. It is preferred that participants have access to and the ability to use broadband internet services to engage with the Caregiving While Black course. Participants should not have a plan in place to move the person living with a dementia illness to an institutional setting within the next six months.

Conditions

Caregiver Burden

Keywords

Caregiver of patients living with dementia; African-American caregivers; Black caregivers

Outcome Measures

Primary Outcomes (1)

• Efficacy of Caregiving while Black in enhancing caregivers' sense by assessing the change in Caregiver Mastery Score

  Participants will complete the Caregiver Mastery questionnaire. A 3 3-5 item scale of caregiver mastery of caregiving situations, indicating the extent to which respondents agree (5) or disagree (1) with each item. The instrument includes categories of relational deprivation, caregiving competence, and management of situations. Total scores range from 14 to 56, where higher scores indicate feeling a greater sense of mastery of caregiving.

  Baseline, 10 weeks, and 6 months

Secondary Outcomes (5)

• Perceived ability to manage recipients' behavioral and psychological symptoms (depression).

  Baseline, 10 weeks, and 6 months

• Perceived ability to manage anxiety.

  Baseline, 10 weeks, and 6 months

• Perceived ability to manage recipients' burden

  Baseline, 10 weeks, and 6 months

• Perceived ability to manage recipients' stress

  Baseline, 10 weeks, and 6 months

• Perceived ability to manage and improve recipient's health literacy

  Baseline,10 weeks, and 6 months

Study Arms (2)

Usual Care

ACTIVE COMPARATOR

Standard of Care

Other: Usual Care

Caregiving while Black

EXPERIMENTAL

Caregivers of PLWD taking part in a fully self-paced asynchronous online caregiver education program.

Other: Caring While Black

Interventions

Usual Care OTHER

Caregivers assigned to the usual care group will be enrolled in the course at the 3-month mark after consenting. All caregivers will then participate in quantitative interviews at post- 6months of their baseline

Also known as: Standard of Care

Usual Care

Caring While Black OTHER

Caregivers assigned to this group will receive a schedule for their completion of the course over the next 2 months and supplemental course materials through the mail. The Canvas platform will enable the course to monitor everyone's movement in the cohort through the asynchronous part of the course. Nudges and reminders will be sent twice a week via text or email with the participant's consent.

Also known as: Self-paced asynchronous online course

Caregiving while Black

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• years or older
• family member (or friend) who self-identifies as Black American and as the principal caregiver of a community-dwelling person living with dementia (PLWD), (not in hospice care) and who is the principal companion of that person during healthcare encounters;
• provides some hands-on care multiple times a week;
• has access to an electronic device and/or access to broadband internet; and
• able to speak and understand English.
• Caregivers are not required to be co-located with the care recipient.

You may not qualify if:

• Those who cannot provide consent,
• are not yet adults (\<18 years of age),
• prisoners, cognitively impaired adults,
• has plans to relinquish caring responsibilities for PLWD or considering moving the PLWD to an institutional setting within the next 6 months, and
• who are not able to clearly understand English.

Sponsors & Collaborators

• Emory University: lead
• University of California, Davis: collaborator

Study Sites (1)

Emory University

Atlanta, Georgia, 30322, United States

RECRUITING

MeSH Terms

Conditions

Caregiver Burden

Interventions

Standard of Care

Condition Hierarchy (Ancestors)

Stress, Psychological; Behavioral Symptoms; Behavior

Intervention Hierarchy (Ancestors)

Quality Indicators, Health Care; Quality of Health Care; Health Services Administration; Health Care Quality, Access, and Evaluation

Study Officials

• Fayron Epps, PhD, RN

  Emory University

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Fayron Epps, PhD, RN

CONTACT

404-727-6936; fepps@emory.edu

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor | Director of Community & Research Engagement

Study Record Dates

• First Submitted: February 23, 2023
• First Posted: March 16, 2023
• Study Start: May 6, 2023
• Primary Completion (Estimated): October 1, 2026
• Study Completion (Estimated): October 1, 2026
• Last Updated: May 14, 2025

Record last verified: 2025-05

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL
• Time Frame: The research team will share the identified data beginning 3 months and ending 5 years following article publication.
• Access Criteria: Proposals should be directed to fepps@emory.edu. To gain access, data requestors will need to sign a data access agreement. Data will be available for 5 years on a third-party website.

Locations

US (1)