Identifying treatment effects of an informal caregiver education intervention to increase days in the community and decrease caregiver distress: a machine-learning secondary analysis of subgroup effects in the HI-FIVES randomized clinical trial.
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PROVIDER: S-EPMC7023677 | BioStudies |
REPOSITORIES: biostudies
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Project description:<h4>Background</h4>Caregivers of adults with cancer often report a different understanding of the patient's prognosis than the oncologist. We examine the associations of caregiver-oncologist prognostic concordance with caregiver depressive symptoms, distress, and quality of life (QoL). We also explore whether these relationships differed by caregiver environment mastery, an individual's sense of control, and effectiveness in managing life situations.<h4>Materials and methods</h4>We used data from a national geriatric assessment cluster-randomized trial (URCC 13070) that recruited patients aged 70 years and older with incurable cancer considering any line of cancer treatment at community oncology practices, their caregivers, and their oncologists. At enrollment, caregivers and oncologists estimated the patient's prognosis (0-6 months, 7-12 months, 1-2 years, 2-5 years, and >5 years; identical responses were concordant). Caregivers completed the Ryff's environmental mastery at enrollment. At 4-6 weeks, caregivers completed the Patient Health Questionnaire-2 (depressive symptoms), distress thermometer, and 12-Item Short-Form Health Survey (quality of life [QoL]). We used generalized estimating equations in models adjusted for covariates. We then assessed the moderation effect of caregiver mastery.<h4>Results</h4>Of 411 caregiver-oncologist dyads (mean age = 66.5 years), 369 provided responses and 28% were concordant. Prognostic concordance was associated with greater caregiver depressive symptoms (β = 0.30; p = .04) but not distress or QoL. A significant moderation effect for caregiver depressive symptoms was found between concordance and mastery (p = .01). Specifically, among caregivers with low mastery (below median), concordance was associated with greater depressive symptoms (β = 0.68; p = .003).<h4>Conclusions</h4>Caregiver-oncologist prognostic concordance was associated with caregiver depressive symptoms. We found a novel moderating effect of caregiver mastery on the relationship between concordance and caregiver depressive symptoms.<h4>Implications for practice</h4>Caregiver-oncologist prognostic concordance is associated with greater caregiver depressive symptoms, particularly in those with low caregiver mastery. When discussing prognosis with caregivers, physicians should be aware that prognostic understanding may affect caregiver psychological health and should assess their depressive symptoms. In addition, while promoting accurate prognostic understanding, physicians should also identify strengths and build resilience among caregivers.
| S-EPMC8018313 | BioStudies
Project description:OBJECTIVES:To determine whether caregiver relationship and race modify associations between physical functioning of persons with dementia (PWD) and their caregiver's burden and general depressive symptoms. METHOD:We pooled data from four behavioral intervention trials (N = 1,211). Using latent growth modeling, we evaluated associations of PWD physical functioning with the level and rate of change in caregiver burden and caregivers' general depressive symptoms and stratified these associations by caregiver relationship and race. RESULTS:PWD were, on average, 81 years old (68% female) with mean follow-up of 0.5 years. More baseline PWD physical impairment was associated with less worsening in caregiver burden over time (? = -0.23, 95% CI: -0.29, -0.14), but this relationship was not modified by caregiver characteristics. More impaired baseline PWD physical functioning was not associated with changes in depressive symptoms (? = -0.08, 95% CI: -0.17, 0.00), but was associated with less worsening in depressive symptoms among spousal (? = -0.08, 95% CI: -0.17, 0.00) and non-white (? = -0.08, 95% CI: -0.17, 0.00) caregivers. CONCLUSIONS:Dementia caregivers may experience reduced caregiver-related burden because of adjustment to PWD functional status, while spousal and non-white caregivers may experience less depressive symptoms resultant of adjustment to functional status.
| S-EPMC6172154 | BioStudies
Project description:<h4>Background</h4>Caregiver burden affects the caregiver's health and is related to the quality of care received by patients. This study aimed to determine the extent to which caregivers feel burdened when caring for patients with Alzheimer's Disease (AD) and to investigate the predictors for caregiving burden.<h4>Methods</h4>A cross-sectional study was conducted. One hundred two caregivers of patients with AD at Maharaj Nakorn Chiang Mai Hospital, a tertiary care hospital, were recruited. Assessment tools included the perceived stress scale (stress), PHQ-9 (depressive symptoms), Zarit Burden Interview-12 (burden), Clinical Dementia Rating (disease severity), Neuropsychiatric Inventory Questionnaires (neuropsychiatric symptoms), and Barthel Activities Daily Living Index (dependency). The mediation analysis model was used to determine any associations.<h4>Results</h4>A higher level of severity of neuropsychiatric symptoms (r?=?0.37, p?<?0.01), higher level of perceived stress (r?=?0.57, p?<?0.01), and higher level of depressive symptoms (r?=?0.54, p?<?0.01) were related to a higher level of caregiver burden. The direct effect of neuropsychiatric symptoms on caregiver burden was fully mediated by perceived stress and depressive symptoms (r?=?0.13, p?=?0.177), rendering an increase of 46% of variance in caregiver burden by this parallel mediation model. The significant indirect effect of neuropsychiatric symptoms by these two mediators was (r?=?0.21, p?=?0.001).<h4>Conclusion</h4>Caregiver burden is associated with patients' neuropsychiatric symptoms indirectly through the caregiver's depressive symptoms and perception of stress. Early detection and provision of appropriate interventions and skills to manage stress and depression could be useful in reducing and preventing caregiver burden.
| S-EPMC7953798 | BioStudies
Project description:Background and aims:Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes. Methods:We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health. Results:We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain. Conclusions:Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.
| S-EPMC6427058 | BioStudies
Project description:<h4>Purpose</h4>We describe an approach to rapidly adapt and implement an education and skills improvement intervention to address the needs of family caregivers of functionally impaired veterans-Helping Invested Families Improve Veterans' Experience Study (HI-FIVES).<h4>Design</h4>Prior to implementation in eight sites, a multidisciplinary study team made systematic adaptations to the curriculum content and delivery process using input from the original randomized controlled trial (RCT); a stakeholder advisory board comprised of national experts in caregiver education, nursing, and implementation; and a veteran/caregiver engagement panel. To address site-specific implementation barriers in diverse settings, we applied the Replicating Effective Programs implementation framework.<h4>Findings</h4>Adaptations to HI-FIVES content and delivery included identifying core/noncore curriculum components, reducing instruction time, and simplifying caregiver recruitment for clinical settings. To enhance curriculum flexibility and potential uptake, site personnel were able to choose which staff would deliver the intervention and whether to offer class sessions in person or remotely. Curriculum materials were standardized and packaged to reduce the time required for implementation and to promote fidelity to the intervention.<h4>Conclusions</h4>The emphasis on flexible intervention delivery and standardized materials has been identified as strengths of the adaptation process. Two key challenges have been identifying feasible impact measures and reaching eligible caregivers for intervention recruitment.<h4>Clinical relevance</h4>This systematic implementation process can be used to rapidly adapt an intervention to diverse clinical sites and contexts. Nursing professionals play a significant role in educating and supporting caregivers and care recipients and can take a leading role to implement interventions that address skills and unmet needs for caregivers.
| S-EPMC8457510 | BioStudies
Project description:The primary purpose of this study was to investigate adult-child caregiver burden in heart failure (HF) patients. Secondary purpose of the study was to identify the possible influencing factors for caregiver burden and depressive symptoms in a young adult-child caregiver group.A total of 138 adult-child caregivers and 138 patients with HF participated in this study. Caregivers' burden, depressive symptoms, and anxiety levels were assessed by using Zarit Caregiver Burden Scale (ZCBS), Beck Depression Inventory, and State-Trait Anxiety Inventory, respectively.The mean ZCBS scores of the female caregivers were significantly higher than male caregivers. Approximately one-third of the adult-child caregivers had at least mild depressive symptoms. Caregivers with higher depressive symptoms had higher levels of caregiver burden. There were positive correlations between caregiving time, severity of depressive symptoms, and perceived caregiver burden. There was a negative correlation between education level of caregivers and perceived caregiver burden. Age, socioeconomic level, and marital status of patients were affecting factors for depressive symptoms in caregivers. Among caregiver characteristics, gender, marital status, and ZCBS scores seem to influence the depression in caregivers.The study findings suggest significant levels of burden and depressive symptoms even in adult-child caregivers of HF patients.
2014-01-01 | S-EPMC4238174 | BioStudies
Project description:Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.
2019-01-01 | S-EPMC6538764 | BioStudies
Project description:Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes.Cancer patient/caregiver dyads (N?=?216) were randomised to a telephone outcall program (n?=?108) or attention control group (n?=?108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed.The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean?=?2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean?=?0.85, 95%CI [0.42-1.44]; control group baseline, mean?=?1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean?=?1.02 95%CI [0.52-1.69]; p?=?0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p?=?0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains.While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations.ACTRN12613000731796 ; prospectively registered on 02/07/2013.
| S-EPMC5759190 | BioStudies
Project description:Dementia prevalence and related caregiving burden are increasing, particularly among Hispanics. We studied the characteristics and mental health of Hispanic caregivers in New York City.We recruited 139 Hispanic family caregivers. We collected data on sociodemographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale.The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than US$30 000 a year. In multivariate analyses with linear regression, lower satisfaction with social networks was associated with higher caregiver burden and a greater number of depressive symptoms. Higher dementia severity was associated with higher caregiver burden, while higher caregiver comorbidities were associated with higher depressive symptoms.Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers.
| S-EPMC4519428 | BioStudies
Project description:Background:Individuals with essential tremor (ET), a common movement disorder, experience functional impairment, which contributes to burden experienced by their loved ones and caregivers. Some burdened caregivers report their loved ones as seeming debilitated or prematurely old, a concept that we have called enfeeblement. Using the Essential Tremor Enfeeblement Survey (ETES), we seek to characterize enfeeblement in elders with ET and assess its contribution to caregiver burden. Methods:We administered the ETES (range = 8-40, higher scores indicating more enfeeblement) and other scales to 98 caregivers of individuals with ET. Individuals with ET were also queried regarding tremors, cognitive abilities, and overall health. We then identified demographic and clinical correlates of ETES and modeled the contribution of ETES to caregiver burden (assessed using the Zarit 12-item Burden Interview [ZBI-12]). Results:Mean ETES score was 14.2 ± 6.2 (median = 12.0, range = 8.0-32.0); 26.5% of respondents endorsed at least one of the eight ETES items. Older age, greater tremor severity and disability, more functional and gait disability, more cognitive difficulty, and more depressive symptoms were associated with higher ETES scores. ETES was the strongest contributor to caregiver burden (ZBI-12) and substantially increased the variance explained in models of caregiver burden. Discussion:Enfeeblement seems to describe a previously unexplained component of caregiver burden in elders with ET. The presence of enfeeblement may contribute to greater burden and should be factored into assessments of patient and caregiver needs.
| S-EPMC6814912 | BioStudies