Independent Predictors Of Caregiver Burden Research Articles

16 Relative Contributions of Motor and Non-Motor Symptoms to Caregiver Burden in Parkinson’s Disease Patients Being Evaluated for Deep Brain Stimulation

Objective:Parkinson’s disease (PD) is a neurodegenerative disorder affecting over 10 million people worldwide. PD is characterized by both motor (e.g., tremor, rigidity, and bradykinesia) and non-motor (including cognitive impairment and neuropsychiatric symptoms such as apathy, disinhibition, executive dysfunction) symptoms. Caregiver burden is prevalent in those providing care for patients with PD and can result in negative health complications. Past work shows associations between motor symptoms, cognitive impairment, neuropsychiatric symptoms, and caregiver burden in PD. However, their relative contributions are poorly understood. This study examined these relationships, hypothesizing that while motor symptoms, cognitive impairment, and neuropsychiatric symptoms would all affect caregiver burden, neuropsychiatric symptoms would predict burden above and beyond the contribution of the other factorsParticipants and Methods:Participants were 42 people living with PD who were assessed at a hospital-based tertiary movement disorders specialty clinic for deep brain stimulation (DBS) candidacy evaluation with their caregiver. Motor exam was assessed by a PD specialist using the Unified Parkinson’s Disease Rating Scale (UPDRS). The Mini Mental State Examination (MMSE) assessed global cognition. Frontal Systems Behavior Scale (FrSBe) Family Form captured caregiver ratings of neuropsychiatric symptoms under 3 subscales: apathy, disinhibition, and executive dysfunction. The Multidimensional Caregiver Strain Index (MCSI) captured caregiver burden. Linear regression analyses examined relationships between caregiver burden (MCSI) and motor symptoms (UPDRS), cognitive impairment (MMSE), and neuropsychiatric symptoms (FrSBe).Results:Using linear regression analyses, cognitive impairment (R2=0.08, F(1,41)=4.42, p=0.04) and neuropsychiatric symptoms (R2=0.35, F(1, 41)=21.0, p<0.01) predicted caregiver burden but motor symptoms did not (R2=0.03, F(1,41)=1.30, p=0.26). Hierarchical linear regression revealed that neuropsychiatric symptoms predicted caregiver burden above and beyond the contribution of cognitive impairment (AR2=0.28, AF(1)=12.7, p=0.001), accounting for an additional 28% of the variance in caregiver burden. Follow-up linear regression to examine the relationships between caregiver burden and the FrSBe subscales indicated that apathy (p<0.001), versus disinhibition (p=0.16) and dysexecutive behaviors (p=0.80), was the driver of the significant relationship.Conclusions:Consistent with our hypothesis, results revealed that cognitive impairment and neuropsychiatric symptoms (specifically apathy) were independent predictors of caregiver burden, with neuropsychiatric symptoms predicting caregiver burden above and beyond the contribution of cognitive impairment. Somewhat surprisingly, motor symptoms were not a predictor of caregiver burden contrary to some previous research, though findings are mixed. Results highlight the importance of assessing for neuropsychiatric symptoms in PD, which may be overlooked by care providers relative to motor or cognitive symptoms, but which appear stressful to caregivers. Future directions include reexamining results in a larger more heterogenous sample including people living with PD at different disease stages (i.e., everyone in the present sample had severe enough symptoms to be considering DBS). Cognitive measures of executive functioning (which are more specific to PD than measures of global cognition) should also be included in future works. Development of supportive caregiver interventions specifically targeting apathy in PD may be useful. Longitudinal designs would be helpful to reexamine relationships following DBS surgery, as there are some reports of increased neuropsychiatric symptoms following the procedure.

Burden prediction in cancer caregivers: role of social support and connectedness

ObjectivesCaregivers play a key role in providing support to people with cancer. However, caregiving can be stressful and demanding, resulting in perceived caregiver burden. Social connectedness is considered partially independent...

Caregiver Burden Among Those Caring for Patients With Spina Bifida

Objective1) To identify baseline characteristics of caregivers of school-aged children with spina bifida; 2) To identify independent predictors of caregiver burden in this population. Materials and MethodsA survey was distributed via Facebook advertising to caregivers of patients with congenital genitourinary anomalies from May to September 2018. Eligible participants (n = 408) entailed English-speaking adults who are involved in the patient's care and attend ≥50% of their medical appointments. Caregiver burden was assessed using the Caregiver Burden Inventory (CBI), where higher scores indicate higher burden. CBI ≥24 indicates need for respite and CBI ≥36 indicates high risk of burnout. Bivariate analyses (t-tests and chi-square tests) were conducted using STATA software. ResultsOur analysis includes 408 caregivers caring for patients with spina bifida. In our study population, 59.3% of caregivers were in need of respite due to caregiver burden and 26.7% of caregivers were so burdened that they are at risk of burning out (CBI score ≥36). Bivariate analysis showed that caregiver gender and number of tasks performed by the caregiver were significantly associated with risk of burnout (CBI ≥ 36). Multivariable analysis of overall caregiver burden showed increased risk of burnout (CBI ≥ 36) among older caregivers, female caregivers, and those performing more caregiving tasks. ConclusionCaregiver burden is common among caregivers of patients with spina bifida, and further research is needed to identify strategies and resources for mitigating caregiver burden.

Creation and Initial Validation of the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Screening Tool

Purpose Dysphagia is a debilitating condition with widespread consequences. Previous research has revealed dysphagia to be an independent predictor of caregiver burden. However, there is currently no systematic method of screening for or identifying dysphagia-related caregiver burden. The aim of this study was to develop a set of questions for a dysphagia-related caregiver burden screening tool, the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES), and pilot the tool to establish preliminary validity and reliability. Method The questionnaire was developed through an iterative process by a team of clinical researchers with expertise in dysphagia, dysphagia-related and general caregiver burden, and questionnaire design. A heterogenous group of 26 family caregivers of people with dysphagia completed the CARES, along with the Eating Assessment Tool (EAT-10), the International Dysphagia Diet Standardisation Initiative Functional Diet Scale (IDDSI-FDS), and the Zarit Burden Interview (ZBI). Information on construct validity, item fit, convergent validity, internal consistency, and reliability was determined via Rasch analysis model testing, Cronbach's alpha, and Spearman's rho calculations. Results The final CARES questionnaire contained 26 items divided across two subscales. The majority of the questionnaire items fit the model, there was evidence of internal consistency across both subscales, and there were significant relationships between dysphagia-specific burden (CARES) and perceived swallowing impairment (EAT-10), general caregiver burden (ZBI), and diet restrictiveness (IDDSI-FDS). Conclusions Results from the current study provide initial support for the validity and reliability of the CARES as a screening tool for dysphagia-related burden, particularly among caregivers of adults with swallowing difficulties. While continued testing is needed across larger groups of specific patient populations, it is clear that the CARES can initiate structured conversations about dysphagia-related caregiver burden by identifying potential sources of stress and/or contention. This will allow clinicians to then identify concrete methods of reducing burden and make appropriate referrals, ultimately improving patient care.

The Burden and Perceived Stress on Family Caregivers of Patients With Orofacial Cleft Deformities in The Perioperative Period of Cleft Repair.

Different stages along the trajectory of cleft care may present with different and peculiar challenges that may negatively impact family caregivers, leading to considerable stress and burden. This study aims to evaluate the family caregiver burden and perceived stress of caring for patients with cleft deformities. Contributing factors to family caregivers’ burden in the perioperative period of cleft repair was also identified. A cross-sectional design that included 90 adult caregiver–patient pairs was employed. Semi-structured questionnaire was used to collect necessary information. The level of caregiver’s burden was assessed using the Zarit burden interview score. The results demonstrated the levels of caregiver burden as severe (4.4%), moderate to severe (21.1%), mild to moderate (40%), and little or none (34.5%). The only significant and independent predictor of caregiver burden was earning less than US$50/month (odds ratio = 2.30, 95% CI = 0.95-5.61, P = .066). Coping strategy was mainly family support (98.9%), while the greatest need expressed was financial assistance (66.7%). Our findings suggests that efforts geared at reducing direct and indirect cost of cleft care may help in reducing caregivers’ burden.

Impact of caregiver burden on health-related quality of life and family functioning of carers of children with epilepsy at the Charlotte Maxeke Johannesburg Academic Hospital, South Africa

Background. The impact of caring for a child with a chronic disease on caregivers and their family functioning contributes to the child’s adaptation to the disease. Objectives. To determine the impact of caregiver burden on the health-related quality of life (HRQOL) and family functioning of carers of children with epilepsy (CWE), and to determine factors associated with a high impact of caregiver burden. Method. A cross-sectional study was conducted among primary caregivers of CWE attending the Charlotte Maxeke Johannesburg Academic Hospital, South Africa. Participants had been involved in childcare for at least 6 months before study enrolment and all gave informed consent. Data regarding sociodemographic and epilepsy-related variables were obtained from questionnaires, including the 36-item family impact module of the Pediatric Quality of Life assessment tool. Scores in the lower quartile were considered indicative of a negative impact on HRQOL and poor family functioning. Results. Participants identified as experiencing a high impact of paediatric epilepsy care reported raw scores ≤31.3 for both caregiver burden and family functioning. The family functioning score correlated strongly with the caregivers’ HRQOL score ( p =0.78; p<0.001). Multivariate analysis identified a low level of education among caregivers and a high seizure frequency in patients as independent predictors of caregiver burden associated with a negative impact. Conclusion. Our findings suggest that the burden of caregiving in paediatric epilepsy among our study population impacts negatively on family functioning. The burden of care was associated with a low level of caregiver education and a high seizure frequency in their children.

Socio-demographic, Health and Functional Status Correlates of Caregiver Burden Among Care Recipients Age 60 Years and Older in Jamaica.

The provision of care to older persons can impose significant burden on those providing care, burdens influenced by care recipient characteristic, caregiver attributes and availability of social support. This paper focuses on identifying relationships between caregiver burden and the socio-demographic, health and functional status attributes of care recipients age 60years and older in Jamaica. A nationally representative cross-sectional study was done among persons providing non-institutional care for a single person 60years and older. Data were obtained from a total of 180 caregivers from the four geographic health regions of Jamaica using the Zarit Burden Interview and a 44-question structured questionnaire. Associations between caregiver burden and socio-demographic, health and functional status of care recipients were examined and logistic regression applied to ascertain independent predictors of caregiver burden. The results revealed statistically significant relationships between caregiver burden and care recipients' receipt of conditional cash transfer grants and the ability to toilet independently. In multivariate analysis, ability to toilet remained a significant predictor of caregiver burden-Caregivers who had care recipients who were able to toilet independently were 71% less likely to have mild to severe caregiver burden compared to those who had care recipients that were not able to toilet (OR 0.29; 95% CI 0.14-0.57). Families, health care providers, social workers, state actors and caregivers should take this into account as they develop strategies to mitigate associated caregiver burden.

Factors Affecting Psychological Burden on the Informal Caregiver of Patients With Cirrhosis: Looking Beyond the Patient

Cirrhosis leads to considerable morbidity and mortality, compromises quality of life, and often necessitates assistance in activities of daily living. An informal caregiver bears the psychological burden of coping with the needs of the patient and the knowledge of morbid prognosis of a loved one. This aspect is rarely recognized and almost never addressed in a clinical practice. This cross-sectional study assessed the factors influencing psychological burden of cirrhosis on the caregivers in a predominantly lower-middle socioeconomic class Indian population. Patients underwent psychometric tests [Psychometric Hepatic Encephalopathy Score (PHES)], and questionnaires for quantifying caregiver burden [Perceived Caregiver Burden (PCB) and Zarit Burden Interview (ZBI)] and assessing depression [Beck Depression Inventory (BDI)] and anxiety [Beck Anxiety Inventory (BAI)] were administered. One hundred patients with cirrhosis [70% male, 27% with past hepatic encephalopathy (HE), and 53% with minimal HE] and their caregivers (66% women, 81% spouse, 26.51 years of mean relationship) were evaluated. Caregiver burden scores were higher in patients with previous overt HE than in those without previous overt HE [PCB (74.63 vs. 66.15, P=0.001), ZBI (27.93 vs. 21.11, P= 0.023), BDI (11.63 vs. 8.96, P=0.082), and BAI (11.37 vs. 8.12, P= 0.027)]. Similarly, caregivers of patients with minimal HE had higher caregiver burden that those of patients who did not have minimal HE [PCB (70.74 vs. 65.85, P=0.027), ZBI (26 vs. 19.51, P= 0.015)]. Burden scores correlated well with each other and with liver disease severity scores and negatively correlated with socioeconomic status. Repeated hospital admissions, alcohol as etiology, and lower socioeconomic status were the independent predictors of caregiver burden. Higher perceived burden is common in caregivers of patients with cirrhosis. Repeated hospital admissions, alcoholism, and lower socioeconomic status influence caregiver burden.

Burden of care amongst caregivers who are first degree relatives of patients with schizophrenia.

IntroductionCaring for a mentally ill family member is a challenging task. Caregivers who are first-degree relatives (FDR) are at a higher risk of experiencing the negative consequences of caregiving. This study was aimed at determining burden of care and its correlates in caregivers who are first-degree relatives of patients with schizophrenia.MethodsA dyad of 255 patients and caregivers was recruited. A socio-demographic questionnaire was administered to both. The GHQ-12 was used to screen for psychiatric morbidity in the FDRs. Caregiver's burden was assessed with the Zarit Burden Interview. Patients' illness severity and level of functioning were assessed using the Brief Psychiatric Rating Scale and the Global Assessment of Functioning scales respectively.ResultsThe mean ± SD age of caregivers and patients were 45.1 ±12.3 and 36.7 ±13.4 years respectively. About 49% of caregivers experienced high burden of care. Older caregiver's age (r = 0.179; p < 0.004) and greater illness severity (r = 0.332; p < 0.0001) in the patient had weak to moderate positive correlation with burden of care. Caregiver's burden also increased with poorer functioning of the patient (r = -0.467 p < 0.0001). Independent predictors of caregiver burden were low level of education of the caregiver (OR 2.45; 95% CI 1.27-4.73), psychiatric morbidity in the caregiver (OR 6.74; 95% CI 2.51-18.15) and poor patient functioning (OR 2.81; 95% CI 1.27-6.18).ConclusionCaregivers who are first-degree relatives of patients with schizophrenia experience varying degrees of burden of care during caregiving. Routine screening and early psychological intervention would help to ameliorate these negative consequences of caregiving.

Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients

PurposeTo analyze the main determinants of burden and health-related quality-of-life (HRQoL) in caregivers of Brazilian Parkinson's disease (PD) patients. MethodsCaregivers answered Hospital Anxiety and Depression Scale (HADS), Zarit caregiver burden interview (ZCBI) and EQ-5D, a generic measure of HRQoL. Patients were assessed with Hoehn and Yahr (H&Y) staging; Scales for Outcomes in Parkinson's disease (SCOPA) Motor, Cognition, Psychosocial and Sleep scales; Non-Motor Symptoms Scale; HADS; Clinical Impression of Severity Index; EQ-5D and Parkinson's Psychosis Rating Scale. Results50 Caregiver-patient dyads were assessed. Caregivers were significantly younger (55.7 vs. 65.4 years), p < 0.0001. Eighty-eight per cent of caregivers were females, and 78% were spouses. The proportion of caregivers who scored ≥11 points in the HADS-anxiety or HADS-depression subscales was 12% and 14% respectively. ZCBI mean score was 20.2 (SD 12.8), and significantly worsened as severity of disease, based on H&Y, increased (H&Y 1–2: 16.4, H&Y 3–5: 24.6; p = 0.02). Caregiver's EQ-5D Index and visual analog scale mean scores were 0.7 (SD: 0.26) and 76.3 (SD: 16.2) respectively. Weak to moderate association (r = −0.27 to −0.39) between EQ-5D Index and ZBCI mean scores was observed in caregivers. Patient outcomes (sleep disorders and behavioral-psychotic symptoms) and caregiver outcomes (mood, time of caregiving) were independent predictors of caregiver burden (adjusted R2 = 0.55; p < 0.0001) in the multivariate regression analysis. Caregiver's mood status was a significant determinant of caregiver's HRQoL, as measured by the EQ-5D Index (adjusted R2 = 0.28; p = 0.006). ConclusionsPatients' psychiatric and sleep disorders and caregiver's mood significantly influenced burden and HRQoL in Brazilian PD caregivers.

Role of Social Support in Predicting Caregiver Burden

Rodakowski J, Skidmore ER, Rogers JC, Schulz R. Role of social support in predicting caregiver burden. ObjectiveTo examine the unique contribution of social support to burden in caregivers of adults aging with spinal cord injury (SCI). DesignSecondary analyses of cross-sectional data from a large cohort of adults aging with SCI and their primary caregivers. SettingMultiple community locations. ParticipantsCaregivers of community-dwelling adults aging with SCI (n=173) were interviewed as part of a multisite randomized controlled trial. The mean age ± SD of caregivers was 53±15 years and of care-recipients, 55±13 years. InterventionsNot applicable. Main Outcome MeasuresThe primary outcome was caregiver burden measured with the Abridged Version of the Zarit Burden Interview. A hierarchical multiple regression analysis examined the effects of social supports (social integration, received social support, and negative social interactions) on burden in caregivers of adults aging with SCI while controlling for demographic characteristics and caregiving characteristics. ResultsAfter controlling for demographic characteristics and caregiving characteristics, social integration (β̂=−.16, P<.05), received social support (β̂=−.15, P<.05), and negative social interactions (β̂=.21, P<.01) were significant independent predictors of caregiver burden. ConclusionsFindings demonstrate that social support is an important factor associated with burden in caregivers of adults aging with SCI. Social support should be considered for assessments and interventions designed to identify and reduce caregiver burden.

Do partners to patients with heart failure experience caregiver burden?

NIH Public Access Author Manuscript Eur J Cardiovasc Nurs. Author manuscript; available in PMC 2011 September 27. NIH-PA Author Manuscript Published in final edited form as: Eur J Cardiovasc Nurs. 2010 December ; 9(4): 254–262. doi:10.1016/j.ejcnurse.2010.03.001. Do partners of patients with chronic heart failure experience caregiver burden? Susanna Agren a,b,c,* , Lorraine Evangelista d , and Anna Stromberg a,e a Department of Medical and Health Sciences, Division of Nursing Science, Linkoping University, Sweden b Department c Swedish d School of Cardiothoracic Surgery, Linkoping University Hospital, Sweden Institute for Health Sciences, Sweden of Nursing University of California Los Angeles, USA e Department of Cardiology Linkoping University Hospital, Sweden NIH-PA Author Manuscript Abstract Aims—To describe the levels and identify independent predictors of caregiver burden in partners of patients with heart failure. Background—Care and support from a partner are important for the well-being of patients with heart failure and may potentially delay disease progression. However, caregiving may be associated with burden and stress and it is therefore important to understand which factors that influence caregiver burden. Theoretical models of caregiving describe the concept of burden as an outcome variable, including decreased well-being and health. Methods—Data for this descriptive cross-sectional study were collected between January 2005 and September 2008. The dependent variable consisted of the Caregiver Burden Scale total score index. Socio-demographic and clinical characteristics, health-related quality of life, symptoms of depression, perceived control, and knowledge on heart failure were included in a regression analysis to determine independent predictors of caregiver burden. NIH-PA Author Manuscript Results—The 135 partners had a mean-age of 69 years and 75% were females. Caregiver burden was perceived as medium in 30% of the partners. The patients’ Physical Component Score of SF-36 (p<0.001), partners’ Mental Component Score of SF-36 (p<0.001) and perceived control (p<0.01) accounted for 39% of the variance in caregiver burden. Conclusion—Caregiver burden was lower when the mental health of the partner and the physical health of the patient were better and the partner experienced higher control over the heart disease. A partner-centered approach to educate and support partners of patients with heart failure is essential to improve the life situation for patient–partner dyads. Keywords Caregiver burden; Depression; Health-related quality of life; Heart failure; Partner; Nursing © 2010 European Society of Cardiology. Published by Elsevier B.V. All rights reserved. Corresponding author. Department of Medical and Health Sciences, Division of Nursing Science, Linkoping University, S-581 85 Linkoping, Sweden. Tel.: +46 13 227759. susanna.agren@liu.se . levangel@ucla.edu (L. Evangelista), anna.stromberg@liu.se (A. Stromberg).

Do Partners of Patients with Chronic Heart Failure Experience Caregiver Burden?

To describe the levels and identify independent predictors of caregiver burden in partners of patients with heart failure. Care and support from a partner are important for the well-being of patients with heart failure and may potentially delay disease progression. However, caregiving may be associated with burden and stress and it is therefore important to understand which factors that influence caregiver burden. Theoretical models of caregiving describe the concept of burden as an outcome variable, including decreased well-being and health. Data for this descriptive cross-sectional study were collected between January 2005 and September 2008. The dependent variable consisted of the Caregiver Burden Scale total score index. Socio-demographic and clinical characteristics, health-related quality of life, symptoms of depression, perceived control, and knowledge on heart failure were included in a regression analysis to determine independent predictors of caregiver burden. The 135 partners had a mean-age of 69 years and 75% were females. Caregiver burden was perceived as medium in 30% of the partners. The patients' Physical Component Score of SF-36 (p<0.001), partners' Mental Component Score of SF-36 (p<0.001) and perceived control (p<0.01) accounted for 39% of the variance in caregiver burden. Caregiver burden was lower when the mental health of the partner and the physical health of the patient were better and the partner experienced higher control over the heart disease. A partner-centered approach to educate and support partners of patients with heart failure is essential to improve the life situation for patient-partner dyads.

Caregiver Burden among Caregivers of Koreans with Dementia

Background: Most studies on caregiver burden have been conducted in Western countries, while few studies on the correlates of caregiver burden have been performed in Korea. Objective: To suggest better policies for the care of dementia patients by using a nationwide database to identify factors that affect caregiver burden in Korea. Methods: The database of the Korean National Health Insurance (KNHI) and National Medical Aid (NMA) programs, which covers all Koreans, was used. A sample of 609 dementia patients and their caregivers was selected from a total of 85,281 dementia patients in 2004 and interviewed to evaluate the total cost of care and caregiver burden. Stepwise multiple linear regression analysis was then performed to identify significant independent predictors of caregiver burden. Results: Among caregiver-related factors, caregiver burden was higher in those who were female, had a history of home care during the previous year, and had less education. Among patient-related factors, poor ADL/IADL function was significant. The most interesting result was that subjective sense of socioeconomic status (good/fair/poor) was a stronger predictor of caregiver outcome than actual economic costs. Conclusion: The results of this study suggest that interventions to assist patients with dementia should focus on female caregivers, especially those considered likely to be suffering from an economic burden. Interventions should also aim to improve the ADL and IADL capacities of patients.

Influence of diabetes mellitus on caregiver burden in home care: A report based on the Nagoya Longitudinal Study of the Frail Elderly (NLS‐FE)

Because little attention has so far been paid to the impact of diabetes mellitus (DM) on caregiver burden in community settings, we sought to confirm the influence of DM on perceived caregiver burden among caregivers providing care to a home elderly person using data from the Nagoya Longitudinal Study of the Frail Elderly (NLS-FE). The NLS-FE is a large prospective study of 1875 community-dwelling elderly. A total of 1592 pairs of dependents and caregivers were included in the analysis. The data we used in this study included the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI), characteristics of caregivers and dependents, and caregiving situation. The pairs were sorted into one control and three DM groups: (i) no DM; (ii) DM taking no medications; (iii) DM taking oral medication only; and (iv) DM taking insulin. The differences in dependent and caregiver characteristics among the groups were assessed. Two hundred and twenty-eight dependents from the NLS-FE study had DM. Of these, 25% took no medication to treat it, 55% took oral medications only, and 20% used insulin. No statistical differences were found in age, gender or kinship among caregivers. No differences were found among the DM categories in levels of caregiver burden according to the J-ZBI, before and after adjusting for these baseline variables. Among the community-dwelling frail elderly, DM is not an independent predictor of caregiver burden.