Caregiving While Black: LIVE
- Conditions
- Dementia
- Interventions
- Behavioral: Caregiving While Black-LIVE
- Registration Number
- NCT06605391
- Lead Sponsor
- Emory University
- 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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 40
- 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
-
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
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- SINGLE_GROUP
- Arm && Interventions
Group Intervention Description Caregiving While Black-LIVE Caregiving While Black-LIVE Black dementia caregivers participating in the psychoeducation course, Caregiving while Black-LIVE, over an 8 week time period.
- Primary Outcome Measures
Name Time Method Change in Health Literacy Questionnaire (HLQ) Score for Feeling Understood by Healthcare Providers Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Feeling understood and supported by healthcare providers" has 4 items where responses are given on a 4-point scale from "strongly disagree" (scored as 1) to "strongly agree" (scored as 4). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Having Sufficient Information Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Having sufficient information to manage my health" has 4 items where responses are given on a 4-point scale from "strongly disagree" (scored as 1) to "strongly agree" (scored as 4). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Actively Managing Health Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Actively managing my health" has 5 items where responses are given on a 4-point scale from "strongly disagree" (scored as 1) to "strongly agree" (scored as 4). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Social Support Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Social support for health" has 5 items where responses are given on a 4-point scale from "strongly disagree" (scored as 1) to "strongly agree" (scored as 4). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Appraisal of Health Information Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Appraisal of health information" has 5 items where responses are given on a 4-point scale from "strongly disagree" (scored as 1) to "strongly agree" (scored as 4). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Ability to Engage with Healthcare Providers Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Ability to actively engage with healthcare providers" has 5 items where responses are given on a 5-point scale from "cannot do" (scored as 1) to "very easy" (scored as 5). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Navigating the Healthcare System Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Navigating the healthcare system" has 6 items where responses are given on a 5-point scale from "cannot do" (scored as 1) to "very easy" (scored as 5). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Ability to Find Information Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Ability to find good health information" has 5 items where responses are given on a 5-point scale from "cannot do" (scored as 1) to "very easy" (scored as 5). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Health Literacy Questionnaire (HLQ) Score for Understand Health Information Subscale Baseline, Month 3, Month 6 The Health Literacy Questionnaire assesses multiple dimensions of health literacy with 9 subscales. The subscale of "Understand health information well enough to know what to do" has 5 items where responses are given on a 5-point scale from "cannot do" (scored as 1) to "very easy" (scored as 5). The total score for this subscale is the average of responses. Higher scores indicate that the subscale is an area of health literacy strength.
Change in Zarit Burden Inventory (ZBI) Score Baseline, Month 3, Month 6 The Zarit Burden Interview is a 22-item scale of objective and subjective caregiver burden. Responses are given on a 5-point scale where 0 = never and 4 = nearly always. Total scores range from 0 to 88 where higher scores indicate greater feelings of being burdened with providing care.
Change in Center for Epidemiological Studies - Depression Score Baseline, Month 3, Month 6 Caregiver depression will be assessed with the 20-item Center for Epidemiologic Studies - Depression Scale. Caregivers are asked how frequently they have experienced specific symptoms of depression in the past week. Responses are given as 0 = rarely, 1 = 1-2 days, 2 = 3-4 days, and 4 = 5-7 days. Total scores range from 0 to 60 with higher scores indicating greater symptoms of depression.
Change in Perceived Stress Scale Score Baseline, Month 3, Month 6 Caregiver stress was assessed with the 14-item Perceived Stress Scale. Responses are given on a scale of 0 to 4 where 0 = never and 4 = very often. Total scores range from 0 to 56 with higher scores indicating greater perceived stress by caregivers.
Change in State-Trait Anxiety Inventory (STAI) Score Baseline, Month 3, Month 6 The STAI is a 20-item self-report scale of positive and negative anxiety experiences. Responses are given on a 4-point scale where 1 = not at all and 4 = very much so. Total scores range from 20 to 80 and higher scores indicate greater anxiety.
Change in Caregiver Assessment of Behavioral Skill Score Baseline, Month 3, Month 6 The Caregiver Assessment of Behavioral Skill instrument includes 17 items asking how frequently caregivers respond to certain situations. Responses are given on a 3-point scale where "seldom true" is scored as 0 and "true most of the time" is scored as 2 (a response is also available when the situation is not relevant). The total score is calculated as the average of item ratings and ranges from 0 to 2, where higher scores indicate greater behavioral skills as related to caregiving.
Change in Pearlin Competence and Management of Situation Score Baseline, Month 3, Month 6 Self-rated caregiving competency is assessed with 4 items asking about feelings the caregiver has as a result of providing care. Responses are given on a 4-point scale where "not at all" is scored as 1 and "completely" or "very" is scored as 4. The total score ranges from 4 to 16 with higher scores indicating greater feelings of competency.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
Emory University, Nell Hodgson Woodruff School of Nursing
🇺🇸Atlanta, Georgia, United States