Caring While Black Program for Caregiver Burden

Overseen By Fayron Epps, PhD, RN

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Emory University

Disqualifiers: Under 18, Prisoners, Cognitively impaired, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 3

140 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial tests an online education program called "Caring While Black," designed to assist Black American caregivers of individuals with dementia. The program aims to enhance caregivers' skills and confidence in their roles. Participants will either engage with this new program or continue their usual care methods. This trial suits Black American caregivers who provide regular, hands-on care for a friend or family member with dementia. Participants need internet access and should not plan to move the person they care for to an institution soon. As an unphased trial, this study offers caregivers the chance to explore innovative support methods tailored to their unique experiences.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

What prior data suggests that this online education program is safe for caregivers?

Research shows that the Caregiving While Black program helps reduce stress and improve skills for Black caregivers. In past studies, caregivers using this program felt less stressed and more in control of their caregiving tasks. No safety issues or negative effects were reported, indicating that the program is well-tolerated. For those considering joining the trial, past research suggests the program is safe. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Caring While Black program because it offers a culturally tailored approach to supporting Black caregivers of people living with dementia (PLWD). Unlike standard caregiver education programs, this innovative treatment is designed to be fully self-paced and accessible online, allowing caregivers to engage with the material on their own schedules. By addressing the unique challenges faced by Black caregivers, this program aims to reduce caregiver burden and improve their overall well-being, offering a personalized experience that standard care often lacks.

What evidence suggests that the Caring While Black program is effective for reducing caregiver burden?

Research shows that the "Caring While Black" program, which participants in this trial may receive, can help reduce stress and anxiety for Black American caregivers. Studies have found that caregiving is often demanding and stressful, frequently resulting in caregiver burden. This program aims to help caregivers manage these challenges more effectively. By addressing the specific needs of Black caregivers, it seeks to enhance their coping skills and overall well-being. Early results suggest that participants in similar programs have felt more empowered and less overwhelmed. These improvements can lead to better care for their loved ones with dementia. ^{6 7 8 9 10}

Who Is on the Research Team?

Fayron Epps, PhD, RN

Principal Investigator

Emory University

Are You a Good Fit for This Trial?

This trial is for Black American caregivers over 18 years old who are the main unpaid caregiver and healthcare companion for a person living with dementia, not in hospice care. They must provide hands-on care frequently, speak English, have internet access, and no plans to institutionalize the cared-for individual within six months.

Inclusion Criteria

Has access to an electronic device and/or access to broadband internet

I provide hands-on care several times a week.

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

Exclusion Criteria

I cannot clearly understand English.

Prisoners

I am unable to give consent for the trial.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Phase 1: Caregiving while Black Course

Participants engage in a fully self-paced asynchronous online caregiver education program

3 months

Online participation

Phase 2: Usual Care

Participants in the usual care condition will take part in the Caregiving while Black course after a delay of 3 months

3 months

Online participation

Follow-up

Participants are monitored for changes in caregiver mastery, stress, and other psychological measures

6 months

3 data collection points

What Are the Treatments Tested in This Trial?

Interventions

• Caring While Black

Trial Overview The study aims to improve caregiving skills through an online education program called 'Caring While Black'. It has two phases: comparing usual care methods against this tailored program to see if it better helps caregivers manage their responsibilities.

How Is the Trial Designed?

Group I: Caregiving while Black Experimental Treatment 1 Intervention

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

Group II: Usual Care Active Control 1 Intervention

Standard of Care

Who Is Running the Clinical Trial?

Emory University

Lead Sponsor

Trials

1,735

Recruited

2,605,000+

University of California, Davis

Collaborator

Trials

958

Recruited

4,816,000+

Published Research Related to This Trial

A pilot study involving 30 Black family caregivers of older adults with dementia revealed that many caregivers face health issues like obesity and hypertension, which can be worsened by caregiving stress.

The study identified effective coping strategies among caregivers, such as spiritual coping and information gathering, suggesting that clinicians should focus on promoting these strategies and providing resources for self-care and respite.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Coping and adaptation to dementia family caregiving: A pilot study. Robinson-Lane, SG., Zhang, X., Patel, A.[2022]

Black or African American caregivers face significant challenges in managing symptoms like pain and lack of appetite for patients in home hospice care, highlighting a need for better support in these areas.

Despite experiencing increased caregiver burden, many caregivers reported satisfaction with hospice services, suggesting that addressing mental health stigma and integrating spiritual support could enhance their overall experience.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care. Park, T., Sloan, DH., Cruz-Oliver, DM., et al.[2023]

In a study of 207 participants (97 African American caregivers and 110 noncaregivers), daily hassles, social support, and positive cognitions were identified as significant predictors of resourcefulness, rather than physiological factors like age or health problems.

The research highlights the importance of psychological and social factors in enhancing resourcefulness among African American women caregivers, suggesting that improving social support and positive thinking could help them cope better with caregiving stress.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Predictors of resourcefulness in African American women. Zauszniewski, JA., Picot, SJ., Roberts, BL., et al.[2022]

In a study of 887 informal caregivers for older adults, there were minimal significant differences in caregiving strain, health, and service use between White and African American caregivers after adjusting for covariates.

Dementia caregivers experienced greater strain, and the study found complex interactions between relationship type, dementia status, and race, suggesting that caregiving experiences may vary significantly based on context rather than race alone.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Racial Differences in Caregiving: Variation by Relationship Type and Dementia Care Status. Badana, ANS., Marino, V., Haley, WE.[2022]

In a study of 1,221 caregivers, Black caregivers engaged in more caregiving activities and cared for individuals with greater impairments, yet White caregivers reported higher levels of burden.

Factors such as caregiver demographics and care recipient needs significantly influenced the burden reported by White caregivers, while for Black caregivers, poorer self-rated health and caregiving activities were the main contributors to their burden.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Burden among white and black caregivers to elderly adults. Fredman, L., Daly, MP., Lazur, AM.[2022]

In a study of 572 non-Hispanic Black caregivers, those who assisted older adults in finding paid help reported higher levels of emotional and physical difficulty, indicating that this role can be challenging despite the support it provides.

Caregivers who helped find paid assistance were often more educated and were caring for older adults with greater needs, suggesting that targeted support and interventions are necessary to improve their caregiving experiences.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Paid Help and Caregiving Experiences of Black Caregivers of Community-Dwelling Older Adults. Fabius, CD., Parker, LJ.[2023]

In a study of 157 Black caregivers of elders with Alzheimer's and other dementias, it was found that Black caregivers had more favorable appraisals of caregiving, including higher satisfaction and lower perceived intrusion compared to White caregivers (N = 472).

Despite these positive appraisals, both Black and White caregivers experienced a simultaneous increase in satisfaction and burden as the amount of care provided increased, indicating that caregiving can be both rewarding and challenging regardless of race.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The dynamics of caregiving for a demented elder among black and white families. Lawton, MP., Rajagopal, D., Brody, E., et al.[2022]

The MIND intervention, a home-based dementia care program, effectively helped Black care partners by providing resources, socialization opportunities, and much-needed breaks, addressing significant challenges in dementia care within the Black community.

Participants identified key barriers such as difficulty accessing dementia information and familial support, suggesting that enhancing the program's cultural responsiveness and communication could further improve its effectiveness.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Transcending inequities in dementia care in Black communities: Lessons from the maximizing independence at home care coordination program. Sloan, DH., Johnston, D., Fabius, C., et al.[2022]

A phenomenological study involving 10 Christian African American men revealed that their caregiving experiences are deeply influenced by themes of commitment, support, spirituality, and significant caregiver burden, including stress and financial strain.

The findings highlight the importance for healthcare providers to understand the diverse experiences of caregivers and to implement culturally relevant assessments and resources to better support them.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The lived experience of informal African American male caregivers. Weinland, JA.[2022]

Citations

1. database.clin-star.org database.clin-star.org/display/project-1R21AG08336601

Empowering Black Dementia Caregivers to Navigate Care ... stress, anxiety, and burden). Exploratory Aim. Determine sustained effects ... Determine sustained effects in engaging in Caregiving while Black-LIVE by ...

2. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC11456394/

Factors Related to Cognitive Performance among Black ... Variables measured included: depression, anxiety, stress, sleep, fatigue, and caregiver burden. Cognitive performance was assessed using the Montreal Cognitive ...

3. sciencedirect.com sciencedirect.com/science/article/abs/pii/S0167494320303307

Caregiving intensity and caregiver burden among ... The present study aimed to test if there was an association between caregiving intensity and caregiver burden, to analyze what type of association existed.

4. cdn.clinicaltrials.gov cdn.clinicaltrials.gov/large-docs/21/NCT03988621/Prot_SAP_001.pdf

Informal caregiving is demanding and stressful. This ... Informal caregiving is demanding and stressful. This stress may exceed the caregiver's ability to adapt, and many eventually become care recipients ...

5. pxjournal.org pxjournal.org/cgi/viewcontent.cgi?article=1796&context=journal

Caregiver burden: Support needed for those who ... In the Dahlgren and Whitehead (1991)34 model, certain factors are highlighted which both predispose to caregiver burden and may be caused by caring (Figure 1).

6. pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov/38330399

Caregiving While Black: A Novel, Online Culturally Tailored ... Paired sample t test analyses revealed significant reductions in caregiver burden and role strain. Caregiver mastery from baseline to completion ...

7. withpower.com withpower.com/trial/phase-caregiver-burden-3-2023-86bdf

Caring While Black Program for Caregiver Burden Factors such as caregiver demographics and care recipient needs significantly influenced the burden reported by White caregivers, while for Black caregivers, ...

8. trialx.com trialx.com/clinical-trials/listings/267209/caregiving-while-black/

Caregiving While Black | Clinical Research Trial Listing ... Study details ; Conditions. Caregiver Burden ; Clinical Study Identifier. NCT05772689 ; Sponsor. Emory University ; Last Modified on. 18 May 2024.

9. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC9137429/

“Walk a Mile in My Shoes:” African American Caregiver ... ... care strategies caregivers adopted while navigating the caregiving experience. ... Effect of multicomponent interventions on caregiver burden and depression ...

10. scholarworks.waldenu.edu scholarworks.waldenu.edu/cgi/viewcontent.cgi?article=15530&context=dissertations

Lived Experience of Caregiver Burden among Black family ... This study aimed to gain an understanding of the caregiver burden among Black family caregivers caring for ill family members during COVID-19. This descriptive.