Residential Care Transition Module (RCTM), [United States], 2016-2021
Principal Investigator(s): View help for Principal Investigator(s) Joseph Gaugler, University of Minnesota; University of Minnesota. School of Public Health
Version: View help for Version V1
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Project Citation:
Gaugler, Joseph, and University of Minnesota. School of Public Health. Residential Care Transition Module (RCTM), [United States], 2016-2021. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2024-02-15. https://doi.org/10.3886/E198382V1
Project Description
Summary:
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Emerging research on family caregiving and institutionalization has emphasized that families do not disengage from care responsibilities following a relative's admission to residential long-term care settings. The Residential Care Transition Module (RCTM) provided 6 formal sessions of consultation (one-to-one and family sessions) over a 4-month period to those family caregivers who had admitted a cognitively impaired relative to a residential long-term care (RLTC) setting (nursing home, assisted living memory care unit). The mixed method, randomized controlled trial of RCTM aimed to decrease family caregivers' emotional and psychological distress, placement-related strain, and increase relative's transitions back to the community. The RCTM is a psychosocial intervention designed for families following RLTC placement to help families better navigate the residential care transitions of relatives with Alzheimer's disease or a related dementia.
This longitudinal dataset was self-reported by caregivers about themselves and their care recipients over a 12-month period.
The data include 133 variables and 240 cases.
Demographic variables in this data file include participant treatment/control group assignment, age, gender, race, marital status, education, income, employment status, and relationship to the care recipient. Additionally, it includes care recipient age, gender, race, marital status, education, income, Medicaid status, type of residence, dichotomous dementia diagnosis, and time since placement in long-term care.
Besides the summary scores of the scales described later, the data also include information on caregiver general health, sleep, emotional difficulties, and bereavement status. It also provides information on caregiver and care recipient adjustment to residential long-term care and the amount and length of typical visits by the caregiver to the care recipient. The number and average length of intervention and ad hoc sessions are included as well.
This longitudinal dataset was self-reported by caregivers about themselves and their care recipients over a 12-month period.
The data include 133 variables and 240 cases.
Demographic variables in this data file include participant treatment/control group assignment, age, gender, race, marital status, education, income, employment status, and relationship to the care recipient. Additionally, it includes care recipient age, gender, race, marital status, education, income, Medicaid status, type of residence, dichotomous dementia diagnosis, and time since placement in long-term care.
Besides the summary scores of the scales described later, the data also include information on caregiver general health, sleep, emotional difficulties, and bereavement status. It also provides information on caregiver and care recipient adjustment to residential long-term care and the amount and length of typical visits by the caregiver to the care recipient. The number and average length of intervention and ad hoc sessions are included as well.
Funding Sources:
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United States Department of Health and Human Services. National Institutes of Health. National Institute on Aging (R01 AG048931)
Scope of Project
Subject Terms:
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caregiving;
long-term care;
dementia
Geographic Coverage:
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United States
Time Period(s):
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12/2016 – 5/2021
Collection Date(s):
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12/2016 – 5/2021
Universe:
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Caregivers of individuals with a history of dementia who were recently admitted to residential long-term care.
Data Type(s):
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survey data
Collection Notes:
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After consenting, participants completed a baseline survey online or via mail. Participants were then randomized to either the treatment or control groups. Follow-up surveys were administered to all participants 4-, 8-, and 12-months after the baseline survey.
If a caregiver became bereaved during the 12-month period, the caregiver was administered a shorter survey. Caregivers were not eligible to enroll if they were currently bereaved, so no participants were bereaved at baseline.
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If a caregiver became bereaved during the 12-month period, the caregiver was administered a shorter survey. Caregivers were not eligible to enroll if they were currently bereaved, so no participants were bereaved at baseline.
Methodology
Response Rate:
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475 individuals were initially contacted, of which 240 enrolled in the study and were randomized equally to the treatment and control groups (n=120 per group). Survey completion rate at Baseline was 100% (n=240), at 4-months was 98.8% (n=237), at 8-months was 97.1% (n=233), and at 12-months was 96.7% (n=232).
Sampling:
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Recruitment occurred nationally and was varied. It included: advertisements in local newspapers, circulars and clinical organizations, and the use of local caregiver registries and long-term care advocacy organizations and provider systems to identify and share study information with potential participants.
Randomization was stratified by 2 factors: factor 1) whether care recipient had been admitted to residential long-term care within 3 months or more than 3 months ago; factor 2) whether the caregiver was caring for their spouse or a non-spouse relative.
Randomization was stratified by 2 factors: factor 1) whether care recipient had been admitted to residential long-term care within 3 months or more than 3 months ago; factor 2) whether the caregiver was caring for their spouse or a non-spouse relative.
Collection Mode(s):
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mail questionnaire;
web-based survey
Scales:
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The following scales were answered by the caregiver about the caregiver and their caregiving role.
The Center for Epidemiological Studies-Depression Scale (CESD_Sum): 0=Rarely or none of the time (less than 1 day), 1=Some of the time (1-2 days), 2= Occasionally (3-4 days), 3= Most of the time (5-7 days)
Zarit Burden Inventory (7-Item Post-Placement Version) (ZBI_Sum): 0=Never, 1=Rarely, 2=Sometimes, 3=Quite frequently, 4=Nearly always
Short Sense of Competence Questionnaire (SSCQ_Sum): 1=Strongly agree, 2=Agree, 3=Feel neutral, 4=Disagree, 5=Strongly disagree
Caregiver Self-Efficacy (CSE_Sum): 1=Very unconfident, 2=Unconfident, 3=Neutral, 4=Confident, 5=Very confident
Mood Assessment Scale (MAS_Sum): 0=no, 1=yes
Primary Subjective Stress (PSS_Sum): 1=Strongly disagree, 2=Disagree, 3=Feel neutral, 4=Agree, 5=Strongly agree
Number of Positive and Negative Interactions split up into 6 summed categories: Relative Positive, Relative Negative, Staff Positive, Staff Negative, and Other Family Members Positive, Other Family Members Negative (PN_Relative_Pos_Sum, PN_Relative_Neg_Sum, PN_Staff_Pos_Sum, PN_Staff_Neg_Sum, PN_Other_Pos_Sum, PN_Other_Neg_Sum): 0=no, 1=yes
Family Caregiver’s Perceptions of Staff Communication (Staff_Communication_Sum): 0=Hardly ever, 1=Some of the time, 2=Most of the time
Staff Support for Families (Staff_Support_Sum): 0=Hardly ever, 1=Some of the time, 2=Most of the time
Family Involvement Interview (FII_Sum): 0=no, 1=yes
*More details provided in the codebook
The Center for Epidemiological Studies-Depression Scale (CESD_Sum): 0=Rarely or none of the time (less than 1 day), 1=Some of the time (1-2 days), 2= Occasionally (3-4 days), 3= Most of the time (5-7 days)
Zarit Burden Inventory (7-Item Post-Placement Version) (ZBI_Sum): 0=Never, 1=Rarely, 2=Sometimes, 3=Quite frequently, 4=Nearly always
Short Sense of Competence Questionnaire (SSCQ_Sum): 1=Strongly agree, 2=Agree, 3=Feel neutral, 4=Disagree, 5=Strongly disagree
Caregiver Self-Efficacy (CSE_Sum): 1=Very unconfident, 2=Unconfident, 3=Neutral, 4=Confident, 5=Very confident
Mood Assessment Scale (MAS_Sum): 0=no, 1=yes
Primary Subjective Stress (PSS_Sum): 1=Strongly disagree, 2=Disagree, 3=Feel neutral, 4=Agree, 5=Strongly agree
Number of Positive and Negative Interactions split up into 6 summed categories: Relative Positive, Relative Negative, Staff Positive, Staff Negative, and Other Family Members Positive, Other Family Members Negative (PN_Relative_Pos_Sum, PN_Relative_Neg_Sum, PN_Staff_Pos_Sum, PN_Staff_Neg_Sum, PN_Other_Pos_Sum, PN_Other_Neg_Sum): 0=no, 1=yes
Family Caregiver’s Perceptions of Staff Communication (Staff_Communication_Sum): 0=Hardly ever, 1=Some of the time, 2=Most of the time
Staff Support for Families (Staff_Support_Sum): 0=Hardly ever, 1=Some of the time, 2=Most of the time
Family Involvement Interview (FII_Sum): 0=no, 1=yes
*More details provided in the codebook
Weights:
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Not applicable
Unit(s) of Observation:
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Individuals
Geographic Unit:
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Not applicable
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