Clinical trial NCT06605391: Caregiving While Black: LIVE
Official title: Caregiving While Black-LIVE: Empowering Black Dementia Caregivers to Navigate Care
Study type: INTERVENTIONAL
Overall status: ACTIVE_NOT_RECRUITING
Phase: NA
Conditions: Dementia
Keywords: Caregiving
Lead sponsor: Emory University
Sponsor class: OTHER
Collaborators: name: National Institute on Aging (NIA)
First posted: 2024-09-20
Enrollment: 40
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: SUPPORTIVE_CARE

Brief summary: This study will test the psychoeducation course, Caregiving while Black - Learning In Vital Engagement (LIVE), among Black caregivers providing care to persons with dementia. This course aims to enhance Black caregivers' capacity to cope effectively with their caregiving role of navigating care and the world of healthcare in ways that take into consideration the social and cultural context of their unique life experiences.

Detailed description: Black caregivers and their care recipients experience disparities in care, have lower rates of formal service use, and are generally under-treated. More specifically, disparities in healthcare quality include higher rates of missed or delayed dementia diagnoses among Black older adults and a lower likelihood of receiving dementia medication or care from a dementia specialist. Notably, disparities exist for caregivers of persons living with Alzheimer's disease and persons living with dementia (PLWD) as well: Black caregivers report more time spent in caregiving than do White caregivers and use less respite service. Black caregivers also report increased difficulties navigating the healthcare system. Further, racial differences and disparities related to caregiving experiences exist at alarming rates for use of supportive services (33% vs 25%), care hours (54% vs 39%), and living below the federal poverty level (32% vs 12%) among Black caregivers compared to White caregivers. Black families faced with dementia (Medicare beneficiaries) incur 1.7 times more in healthcare cost and higher proportions of preventable hospitalizations than White families. Among PLWD, Black older adults account for nearly a third of preventable hospitalizations. It should be noted that these disparities are not due to biological or genetic differences between racial or ethnic groups, as race and ethnicity are social constructs. Rather, it is more likely due to lived experience and structural racism leading to disparities in social and structural determinants of health. These amplified experiences highlight the importance of this proposal to further develop a course that addresses the cultural and practical reality of supporting a PLWD as a Black in America, as Black caregivers desire better access to culturally relevant caregiving and self-care information. One potential tool to mitigate the aforementioned health disparities is to offer an education tailored and responsive to the needs of Black caregivers. This project responds to a compound gap in psychoeducation aimed at promoting caregiving mastery.

This study will test the psychoeducation course, Caregiving while Black - LIVE, among Black caregivers providing care to persons with dementia. The researchers will employ a mixed-methods pre-post no control design to gather formative and evaluative data from four cohorts (10 participants in each cohort) of Black caregivers. The course is self-paced and participants are asked to complete the course over an 8-week period.

Eligibility criteria: Caregiver Inclusion Criteria:

* at least 18 years of age
* family member (or friend) who self-identifies as Black American and as the principal caregiver of a community-dwelling 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
* able to speak and understand English

Caregiver Exclusion Criteria:

* persons who cannot provide consent

  * persons who are not yet adults (under 18 years of age)
  * prisoners
  * cognitively impaired adults
* have plans to relinquish caring responsibilities for PLWD or are considering moving the PLWD to an institutional setting within the next 6 months
* not able to clearly understand English

Primary outcomes:
measure: Change in Health Literacy Questionnaire (HLQ) Score for Feeling Understood by Healthcare Providers Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Health Literacy Questionnaire (HLQ) Score for Having Sufficient Information Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Health Literacy Questionnaire (HLQ) Score for Actively Managing Health Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Health Literacy Questionnaire (HLQ) Score for Social Support Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Health Literacy Questionnaire (HLQ) Score for Appraisal of Health Information Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Health Literacy Questionnaire (HLQ) Score for Ability to Engage with Healthcare Providers Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Health Literacy Questionnaire (HLQ) Score for Navigating the Healthcare System Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Health Literacy Questionnaire (HLQ) Score for Ability to Find Information Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Health Literacy Questionnaire (HLQ) Score for Understand Health Information Subscale
timeFrame: Baseline, Month 3, Month 6
measure: Change in Zarit Burden Inventory (ZBI) Score
timeFrame: Baseline, Month 3, Month 6
measure: Change in Center for Epidemiological Studies - Depression Score
timeFrame: Baseline, Month 3, Month 6
measure: Change in Perceived Stress Scale Score
timeFrame: Baseline, Month 3, Month 6
measure: Change in State-Trait Anxiety Inventory (STAI) Score
timeFrame: Baseline, Month 3, Month 6
measure: Change in Caregiver Assessment of Behavioral Skill Score
timeFrame: Baseline, Month 3, Month 6
measure: Change in Pearlin Competence and Management of Situation Score
timeFrame: Baseline, Month 3, Month 6
Secondary outcomes:
Other outcomes:
Locations:
city: Atlanta
country: United States
facility: Emory University, Nell Hodgson Woodruff School of Nursing
state: Georgia
Study officials:
affiliation: Emory University
name: Fayron Epps, PhD, RN
role: PRINCIPAL_INVESTIGATOR
References: