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

Trial Summary

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 data supports the effectiveness of the treatment Caring While Black, Caregiving While Black, Caregiving While Black-LIVE?

Research shows that Black caregivers often face unique challenges and burdens, but they also report more favorable experiences and satisfaction in caregiving roles compared to White caregivers. Programs like the MIND intervention, which focus on culturally responsive care coordination, have been perceived as beneficial in addressing the specific needs of Black caregivers. ^{1 2 3 4 5}

What makes the Caring While Black treatment unique for caregiver burden?

The Caring While Black treatment is unique because it specifically addresses the cultural and racial experiences of Black caregivers, focusing on their specific challenges and needs, which are often overlooked in other treatments. ^{1 6 7 8 9}

What is the purpose of this trial?

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.

Research Team

Fayron Epps, PhD, RN

Principal Investigator

Emory University

Eligibility Criteria

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 am unable to give consent for the trial.

Prisoners

I plan to stop or transfer care for a person with dementia soon.

Timeline

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

Treatment Details

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.

Participant Groups

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+

Findings from Research

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]

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]

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]

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]

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]

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 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]

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]

References

1. United States pubmed.ncbi.nlm.nih.gov

Burden among white and black caregivers to elderly adults. [2022]

2. England pubmed.ncbi.nlm.nih.gov

Transcending inequities in dementia care in Black communities: Lessons from the maximizing independence at home care coordination program. [2022]

3. United States pubmed.ncbi.nlm.nih.gov

Paid Help and Caregiving Experiences of Black Caregivers of Community-Dwelling Older Adults. [2023]

4. United States pubmed.ncbi.nlm.nih.gov

The dynamics of caregiving for a demented elder among black and white families. [2022]

5. United States pubmed.ncbi.nlm.nih.gov

Coping and adaptation to dementia family caregiving: A pilot study. [2022]

6. United States pubmed.ncbi.nlm.nih.gov

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

7. United States pubmed.ncbi.nlm.nih.gov

Racial Differences in Caregiving: Variation by Relationship Type and Dementia Care Status. [2022]

8. United States pubmed.ncbi.nlm.nih.gov

Predictors of resourcefulness in African American women. [2022]

9. United States pubmed.ncbi.nlm.nih.gov

Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care. [2023]