Caregiving and Racial Considerations During a Pandemic Online Training Education

NCT04732715 | Completed

• 1 other identifier: STUDY00002078
• Study Type: interventional
• Target: 75
• Locations: 1 country
• Sites: 1

Brief Summary

The overall goal of this project is to develop and prototype-test a highly accessible program designed to enhance the mastery of Black American caregivers to provide care to family members or friends living with a dementia illness in a time of crisis. Participants will be asked a series of questions in a baseline interview, and then will be asked to partake in the CaRE course during a 6 to 8-week period.

Conditions

Caregiver Stress Syndrome

Keywords

Disparities; Black American Caregivers; Dementia Caregiving

Outcome Measures

Primary Outcomes (7)

• Change in Cultural Justification for Caregiving Scale Score

  The Cultural Justification for Caregiving Scale is a 10-item self-report assessing the cultural reasons for the caregivers providing care. Responses are given on a 4-point scale where 1 = strongly disagree and 4 = strongly agree. Total scores range from 10 to 40 with higher scores indicating greater cultural influences for providing care.

  Baseline, Week 10, Week 18

• Change in Center for Epidemiologic Studies (CES)-Depression Scale Score

  The CES - Depression scale is a 20-item self-report instrument assessing how often symptoms of depression have been experienced in the last week. For this study, responses are given on a 4-point scale where 1 = rarely or none of the time and 4 = most or all of the time. Total scores range from 20 to 80 where higher scores indicate greater caregiver depression.

  Baseline, Week 10, Week 18

• Change in State-Trait Anxiety Inventory (STAI) Y Form Score

  The STAI Y Form 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 where higher scores indicate greater anxiety.

  Baseline, Week 10, Week 18

• Change in Perceived Stress Scale Score

  The Perceived Stress Scale is a14-item scale assessing the caregivers' feelings and thoughts during the past month. Responses are given on a 5-point scale where 0 = never and 4 = very often. Total scores range from 0 to 40 where higher scores indicate greater perceived stress.

  Baseline, Week 10, Week 18

• Change in Revised Memory and Behavior Problem Checklist (RMBPC) Score

  The RMBPC is a 24-item scale assessing the frequency of problems that persons with dementia often have as well as how much these behaviors bothered the caregiver. Caregiver reactions are assessed on a 5-point scale where 0 = not at all upset and 4 = extremely upset. Total scores range from 0 to 96 where higher scores indicate greater caregiver distress in reaction to problem behaviors.

  Baseline, Week 10, Week 18

• Change in Zarit Burden Interview Score

  The Zarit Burden Interview is a 22-item instrument assessing 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 by being a caregiver.

  Baseline, Week 10, Week 18

• Change in Caregiver Mastery Score

  The Caregiver Mastery instrument includes 14-items assessing feelings experienced as a result of being a caregiver to a person with dementia. The instrument includes categories of relational deprivation, caregiving competence, and management of situations. Responses are given on a 4-point scale where 1 = not at all and 4 = completely. Total scores range from 14 to 56, where higher scores indicate feeling a greater sense of mastery of caregiving.

  Baseline, Week 10, Week 18

Study Arms (1)

CaRE Course

EXPERIMENTAL

Black American caregivers of PLWD will participate in the CaRE Course.

Behavioral: CaRE Course

Interventions

CaRE Course BEHAVIORAL

Participants will complete the CaRE Course over a 6-8 week time period. The curriculum of the CaRE course will include topics addressing caregiving for a PLWD during a pandemic, navigating the healthcare system for a PLWD, guiding and managing daily life, and self care.

CaRE Course

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• self-identify as Black American
• unpaid principal caregiver of a community-dwelling person living with a dementing illness and who is the principal companion of that person during healthcare encounters
• provide at least some hands-on care multiple times a week, if not daily
• access to and ability to use broadband internet services to engage with the CaRE Course
• not planning to move the person living with the dementing illness to an institutional setting within the next six months

You may not qualify if:

• cannot provide consent
• prisoners
• cognitively impaired adults
• not able to clearly understand English

Sponsors & Collaborators

• Emory University: lead
• Retirement Research Foundation: collaborator

Study Sites (1)

Emory University

Atlanta, Georgia, 30322, United States

Location

Study Officials

• Fayron Epps, PhD, RN

  Emory University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor

Study Record Dates

• First Submitted: January 27, 2021
• First Posted: February 1, 2021
• Study Start: October 25, 2021
• Primary Completion: October 31, 2022
• Study Completion: October 31, 2022
• Last Updated: November 10, 2022

Record last verified: 2022-11

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL
• Time Frame: Data will be made available for sharing beginning 3 months and ending 5 years following article publication.
• Access Criteria: Data will be made available for sharing with researchers who provide a methodologically sound proposal, in order to achieve aims in the approved proposal. Proposals should be directed to fepps@emory.edu. To gain access, data requestors will need to sign a data access agreement. Data are available for 5 years via a third party website.

Locations

US (1)