Caregiver burden in Parkinson's disease.

Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being.     

Duodenal levodopa/carbidopa infusion therapy in patients with advanced Parkinson’s disease leads to improvement in caregivers’ stress and burden

Background: Continuous duodenal levodopa infusion (DLI) is an effective therapy that improves quality of life (QoL) in advanced Parkinson’s disease (PD). However, the impact of DLI on caregivers’ stress and burden has not been reported. Methods: We evaluated prospectively open‐label seven advanced PD patients (65.7 ± 9.6 years, 71.4% men) treated with DLI. Schwab & England Activities of Daily Living Scale (ADLS), 39‐item Parkinson’s disease QoL Questionnaire Summary Index score (PDQ‐39SI), Zarit Caregiver Burden Interview (ZCBI), and Caregiver Strain Index (CSI) were used. Comparisons were made between scores obtained at baseline and those at a mean follow‐up of 31.4 ± 7.9 months (range, 23–42). Results: In patients, mean ± SD ADLS was increased from 50 ± 8.2 to 80 ± 11.6 (P = 0.014), and mean ± SD PDQ‐39SI was decreased from 53.7 ± 11.9 to 33.6 ± 12.8 (P = 0.018). In caregivers, ZCBI decreased from 43 ± 13.3 to 20.7 ± 12.1 (P = 0.018) and CSI from 6.3 ± 2.5 to 1.6 ± 0.9 (P = 0.018). At baseline, 57.1% of caregivers reported moderate to severe burden (ZCBI 41–88) compared to 28.6% at the end of the follow‐up (P = 0.015); at that time, no caregiver reported high level of stress (CSI ≥ 7) compared to 57.1% at baseline (P = 0.046). There were significant correlations between ZCBI and CSI improvement (r = 0.813, P = 0.026), ZCBI and PDQ‐39SI (r = 0.875, P = 0.01), and ZCBI and ADLS (r = 0.813, P = 0.026). Conclusions: Duodenal levodopa infusion‐related clinical improvement in patients with advanced PD leads to substantial reductions in caregivers’ stress and burden.     

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.     

Caregivers' assessments of preference-based quality of life in Alzheimer's disease

BackgroundThis study was designed to evaluate the feasibility, reliability, and validity of use of caregivers' ratings of two health preference measures as outcomes for cost-effectiveness analyses in persons with very mild to moderate Alzheimer's disease (AD).MethodsCaregivers completed ratings of preference for AD patients' health by use of the EuroQol-5D system (EQ-5D) and the Health Utilities Index Mark 2 (HUI2). They also rated patients' cognition, mood, burden, AD-specific and generic health-related quality of life (QOL), and activities of daily living.ResultsCaregivers' HUI2 scores were reliable. Neither the caregiver ratings of the patients' health by use of the EQ-5D nor the HUI2 had a relationship with severity of cognitive impairment. Both the EQ-5D and the HUI2 had expected relationships with caregivers' assessments of patients' function, AD-specific QOL, and physical and mental health and selected subscales of the measures of AD-specific QOL and overall health. In addition, caregiver scores showed relationships with patient self-rated function, mood, and physical health but not AD-specific QOL. Caregiver burden was associated with caregivers' scores.ConclusionsCaregiver-completed ratings of preference for patients' health made by use of the EQ-5D and the HUI2 have many of the characteristics of valid preference measures. However, the lack of association with patient Mini-Mental Status Exam scores and patient self-rated AD-specific QOL and the associations with caregiver subjective burden might present limitations to their use as proxy measures for cost-effectiveness analyses.     

Longitudinal psychometric attributes,responsiveness, and importance of change: An approach using the SCOPA‐Psychosocial questionnaire

The objective of this study was to illustrate the analysis of longitudinal validity, responsiveness, and importance of change, using the SCOPA‐Psychosocial Questionnaire (SCOPA‐PS) as a source of empirical data. Sixty‐seven patients with PD in Hoehn and Yahr (HY) stage 2 were followed up for 1 year and assessed by means of the Schwab and England Scale, Unified PD Rating Scale (UPDRS), Hospital Anxiety and Depression Scale (HADS), PDQ‐39, and SCOPA‐PS. A range of methods was applied to enable each of the target attributes to be analyzed from different conceptual stances. The SCOPA‐PS displayed satisfactory acceptability (no floor or ceiling effect), internal consistency (α = 0.80–0.84), convergent validity (r_S = 0.70–0.82 with PDQ‐39), and precision (SEM = 8.80), both at baseline and at the end of follow‐up. The threshold value for significant change ranged from 17.25 (1.96 SEM) to 24.39 (Smallest real difference and Reliable change index). Threshold values for a clinically meaningful change were 0.73–1.26 (effect size, standardized response mean, responsiveness statistic). Change in SCOPA‐PS scores correlated strongly with change in total UPDRS, HADS, and PDQ‐39 scores, and reliably detected 70% of cases that worsened according to the PDQ‐39. The minimally important change (MIC) for “minimally impaired” patients as per the PDQ39 was 8.30–9.10 points. Indices such as 1.96 SEM, effect size, and correlation with the change in other measures provide useful information about different concepts of responsiveness. The MIC should be determined for each specific setting, using distribution‐ and anchor‐based methods. The SCOPA‐PS showed satisfactory longitudinal attributes and responsiveness in stage‐2 Brazilian patients with PD across 1 year of follow‐up. © 2008 Movement Disorder Society     

Mutuality of the marital relationship in Parkinson's disease

To assess the association between mutuality of the marital relationship in Parkinson's disease with disease severity, disability, mental health, quality of life, and caregiver burden. Spouses of patients with PD completed questionnaires assessing mutuality of the marital relationship (Mutuality Scale) and caregiver strain (Caregiver Strain Index). Patients and spouses completed scales assessing their mental health (Brief Symptom Inventory‐18), medical co‐morbidity (Cumulative Illness Rating Scale) and health‐related QoL (SF‐12v2). PD severity and disability were assessed with the Unified Parkinson's Disease Rating Scale and the Older Americans Resource and Services Disability Scale. The relationships between mutuality and patient and spousal variables were analyzed with univariate correlations and multiple regression. Ninety‐six spouse‐patient pairs were assessed. Increased mutuality, as reported by the spouse was associated with reduced caregiver burden, less depression of both spouse and patient, and less PD severity. Mutuality was inversely correlated with gait impairment, with lesser correlations for balance, urinary incontinence and motor fluctuations. Greater mutuality between spouses and patients with PD is associated with better mental health of both partners, reduced caregiver burden and improved spousal quality of life. PD severity, especially gait, balance, urinary incontinence and motor fluctuations are particular stressors on the marital relationship. © 2008 Movement Disorder Society     

Exploring the burden of the primary family caregivers of schizophrenia patients in Taiwan

Aim: The purpose of the present study was to investigate the burden of the primary family caregivers of schizophrenia patients and the factors that affect caregiver burden. Methods: A total of 126 pairs of patients and their primary family caregivers were recruited from the day care and acute wards of two teaching general hospitals. Demographic information was collected. All patients went through an interview with a senior psychiatrist using the Brief Psychiatric Rating Scale (BPRS). The Caregiver Burden Inventory–Brief Version and the Chinese Health Questionnaire (CHQ) were used to assess the caregiver burden and the caregivers' health condition. One‐way analysis of variance and Pearson correlation were used to analyze the relationship between demographic factors and caregiver burden. Multiple regression was used to analyze predictors of burden of caregivers. Statistical significance in this study was defined as P ≤ 0.05. Results: The caregiver burden scores (25.9 ± 10.7; range, 3–61) indicated a moderate burden level. Among the five dimensions of burden, caregiver anxiety (2.13 ± 0.86) was the highest, followed by dependency of the patient (1.85 ± 1.02), feeling shame and guilt (1.56 ± 1.02), and family interference (1.43 ± 0.83). The burden level of stigmata (1.32 ± 1.24) was the lowest. The first three rankings of burden were ‘I worry about his/her safety when he/she is alone’ (2.26 ± 1.15), ‘I worry that she/he will become sick at any time’ (2.23 ± 1.10), and ‘I feel he/she depends on me very much’ (2.02 ± 1.29). Patient satisfaction with medical staff support (P = 0.00), CHQ scores of the caregivers (P = 0.00), and the BPRS scores of the patients (P = 0.01) were significantly associated with the caregiver burden scores. Conclusions: The physical and mental health condition of the primary family caregiver of schizophrenia patients was the most important factor determining the caregiver burden level. Comprehensive multidisciplinary care of chronic schizophrenia patients is needed, care that supports the needs and improves the psychiatric symptoms of the patients, helps to decrease the caregiver burden level, and facilitates family participation in treatment.     

Caregiver burden after stroke: towards a structural model

Background and purposeStroke may impose a severe burden on both the patients and their caregivers. Although there is substantial literature relating to the adverse impact of stroke on patients, considerably less is known about its impact on their caregivers. The aim of this study was to analyse predictive factors of the overall burden in caregivers of stroke victims and to verify the structural model of burden, built on the basis of theoretical and empirical assumptions.Material and methodsOne hundred and fifty pairs of patients and their caregivers were evaluated. The Caregiver Burden Scale (CB), Hospital Anxiety and Depression Scale (HADS), Sense of Coherence Scale (SOC), Social Support Scale, Geriatric Depression Scale, Barthel Index and Scandinavian Stroke Scale were all used to evaluate caregiver burden and the characteristics of patients and caregivers.ResultsThe caregivers experienced a moderate burden (mean CB = 2.08) and emotional distress (mean total HADS = 14.1). Path analysis showed that higher burden was associated with a lower SOC score, higher emotional distress, and lower patient's functional status. Higher emotional distress, in turn, was associated with lower SOC and lower patient's functional status. These results show that the burden and the degree of emotional disturbance are two distinct negative consequences of caregiving.ConclusionsThe negative consequences of caregiving depend mainly on the caregiver's intra-psychic factors and the patient's disability. Professional interventions should be targeted at enhancing caregivers’ ability to cope with stress, improving their caregiving skills and reducing the physical dependence of patients.     

脑卒中老人主要照顾者照顾负担现状及相关因素研究

目的了解住院老年脑卒中患者主要照顾者的照顾负担并分析其影响因素。方法应用照顾者负担量表(caregiver burden inventory,CBI)、社会支持评定量表(social support rating scale,SSRS)、照顾者积极感受量表(positive aspects of caregiver,PAC),对211例住院老年脑卒中患者及其主要照顾者进行问卷调查。结果住院脑卒中患者子女照顾者的照顾负担得分总分(57.37±10.15)分,对应条目均分为(2.39±0.42)分。逐步多元回归分析显示,住院老年脑卒中患者BI指数、有无抑郁,照顾者年龄、照顾年限、社会支持水平、照顾者积极感受为照顾负担的影响因素。结论脑卒中照顾者的照顾负担亟待重视,其影响因素涉及多个方面。医护人员应针对相关因素,帮助减轻照顾者和老年脑卒中患者双方负担。     

Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study

OBJECTIVES: Caring for a relative with schizophrenia or dementia has been associated with reports of caregiver burden, symptoms of anxiety, depression, poor self-rated health, and elevated health service use; however, comparable data for caregivers of relatives with bipolar disorder are lacking. This study reports preliminary data on the health, psychological distress and health service use of caregivers of patients with bipolar disorder. It additionally evaluates the relationship of the level of burden caregivers report experiencing to their use of health services, controlling for level of psychological distress and health status. METHODS: Subjects were primary caregivers of 264 patients with Research Diagnostic Criteria-diagnosed bipolar disorder and their bipolar relatives. Caregiver mental health and primary care service use were assessed retrospectively for the 7-month period prior to inpatient or outpatient admission of the bipolar patient. Caregiver depression, anxiety, medical conditions and patient symptomatology were assessed as well. RESULTS: Hierarchical logistic regression analysis demonstrated that caregiver burden significantly increased the likelihood of mental health service use (OR = 13.53, p < 0.001) even after controlling for caregiver psychological distress and medical conditions, while anxiety and depression level, but not burden, significantly increased the likelihood of primary care service use, controlling for other variables (OR = 1.72, p = 0.02). CONCLUSIONS: Burdens experienced by family caregivers appear to increase use of health services, and presumably cost, and may be reduced by psychosocial intervention.     

Burden on caregivers of older patients with bipolar disorder

Objectives: Available data suggest high burden on caregivers of patientswith bipolar disorder (BD), yet the well-being of patients with BD increasingly depends on family members, partners and close friends. Aspatients with BD get older, the need for informal care may shift. We aimed to describe the caregivers of older adults with BD (OABD) and explore what patients' and caregivers' characteristics are associated with caregiver burden.

Method: Forty-seven caregivers of OABD were questioned about their perceived burden and depressive symptoms. Linear regression analyses were performed to examine the influence of various patients' and caregivers' characteristics on caregiver burden or depression.

Results: More than half of all caregivers experienced some degree of burden,and 6.4% reported depressive symptoms. The number of psychiatric admissions and social functioning were the only patients' characteristics associated with higher burden. Caregiver burden was significantly associated with caregiver's other obligations. None of the patient or caregiver characteristics was significantly associated with depression in caregivers of OABD.

Conclusion: In OABD, even with few residual symptoms, more than half of all caregivers experience substantial burden. Future studies are needed to confirm if improving social functioning and preventing psychiatric hospitalizations decrease the burden on the caregivers of OABD.     

Gender difference and caregivers' burden in early-onset Alzheimer's disease

Background: Caregiver burden is the stress experienced as a result of caregiving. Despite the increasing number of Alzheimer's disease (AD) patients who are cared for at home, little has been published about the caregiver burden pertaining to caregivers of early‐onset AD patients. The objective of this study was to examine the difference between the genders with respect to the careburden of early‐onset AD caregivers. Methods: Twenty‐four patients with early‐onset AD and their caregivers participated in this study. Dementia severity, caregiver's burden, depressive mood and behavioral disturbance were measured and examined. Results: There was no significant difference between female and male caregivers in terms of careburden or depressive mood. However, when correlations were considered, female caregivers showed significant associations between careburden and the patient's age. Associations between the subscales of careburden were also shown for female caregivers. However. there was no significant correlation between the subscales of careburden and dementia severity and the number of behavioral problems for either female or male caregivers. Depression scores showed only correlations with the subscales of careburden for female caregivers. Conclusion: The present study examined the difference between the genders with respect to the care burden experienced by caregivers of early‐onset AD patients. The results reinforce those of previous studies in that female caregivers are more likely to experience careburden than male caregivers. The present study indicates the importance of mental health support for female caregivers.     

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.     

Patient and caregiver quality of life in psychogenic non-epileptic seizures compared to epileptic seizures

PurposeLittle is known about the effect of psychogenic non epileptic seizures (PNES) to caregiver quality of life (QOL), particularly as it compares to epileptic seizures (ES). We sought to characterize this effect and identify its determinants.MethodsThe study population comprised of 126 ES and 33 PNES patients who underwent video EEG monitoring along with 48 and 18 caregivers respectively who accompanied them to their investigations. Patients completed questionnaires providing demographic, disease-related, cognitive, psychiatric, sleep and QOL information on admission, prior to their diagnosis being clarified. Their caregivers completed questionnaires providing demographic, disease burden and generic QOL information. Paraclinical data were also gathered. Regression analysis was used to identify patient and caregiver related determinants of patient and caregiver QOL.ResultsQOL scores were significantly worse for PNES than ES patients and were mainly linked to depression levels. PNES and ES caregivers had comparable demographic characteristics and QOL scores. ES caregiver QOL was better in employed caregivers with lower burden scores for the physical component summary (PCS) and worse in female caregivers of depressed patients with higher burden scores for the mental component summary (MCS). Caregiver burden score was the strongest correlate of PNES caregiver MCS QOL score.ConclusionCaregiver QOL in PNES does not differ from caregiver QOL in ES, while patient QOL is worse in PNES. Caregiver burden emerges as a consistent correlate of caregiver QOL both in ES and PNES. These findings advocate for consideration of caregiver burden and QOL in PNES in clinical practice and for future research paradigms.     

Patients', doctors', and caregivers' assessment of disability using the UPDRS‐ADL section: Are these ratings interchangeable?

This multicenter study sought to analyze the validity and reliability of the Unified Parkinson's Disease Rating Scale (UPDRS)-section 2 (Activities of Daily Living, ADL) as applied by patients and caregivers. Sixty pairs of PD patients-caregivers were enrolled for study purposes. Neurologists used a set of scales to determine disease severity and patients' functional state. Patients and caregivers used adapted versions of the UPDRS-section 2 in tandem with other measures. Wilcoxon and Mann-Whitney tests, weighted kappa, intraclass and Spearman's correlation coefficients, as well as multivariate linear regression models were applied. On the whole, PD patient self-assessment and caregiver evaluation of patients' disability showed close concordance with neurologists' ratings. Correlation between caregiver ratings and clinical evaluation tended to be slightly lower than that for patient-based self-assessment. Depression showed a positive correlation with disability and had a nonsystematic influence on UPDRS-section 2 (ADL) scores. As expected, there was a significant correlation between perceived disability and health-related quality of life measures. Caregiver burden did not reduce the level of agreement with neurologists as to the overall rating of any given patient's disability. In PD, UPDRS-section 2-based assessment of disability by patients themselves and caregivers is a valid and reliable outcome.     

Independent validation of the scales for outcomes in Parkinson’s disease‐autonomic (SCOPA‐AUT)

Background and purpose: Autonomic dysfunction is common in Parkinson’s disease (PD) and causes a great impact in health‐related quality of life (HRQL) and functional status of patients. This study is the first independent validation of the Scales for Outcomes in PD‐Autonomic (SCOPA‐AUT). Methods: In an observational, cross‐sectional study (ELEP Study), 387 PD patients were assessed using, in addition to the SCOPA‐AUT, the Hoehn and Yahr staging, SCOPA‐Motor, SCOPA‐Cognition, Cumulative Illness Rating Scale‐Geriatrics, modified Parkinson Psychosis Rating Scale, Clinical Impression of Severity Index for PD, Hospital Anxiety and Depression Scale, SCOPA‐Sleep, SCOPA‐Psychosocial, pain and fatigue visual analogue scales, and EQ‐5D. SCOPA‐AUT acceptability, internal consistency, construct validity, and precision were explored. Results: Data quality was satisfactory (97%). SCOPA‐AUT total score did not show floor or ceiling effect, and skewness was 0.40. Cronbach’s alpha coefficients ranged from 0.64 (Cardiovascular and Thermorregulatory subscales) to 0.95 (Sexual dysfunction, women). Item homogeneity index was low (0.24) for Gastrointestinal subscale. Factor analysis identified eight factors for men (68% of the variance) and seven factors for women (65% of the variance). SCOPA‐AUT correlated at a high level with specific HRQL and functional measures (r_S = 0.52–0.56). SCOPA‐AUT scores were higher for older patients, for more advanced disease, and for patients treated only with levodopa (Kruskal–Wallis test, P < 0.01). Standard error of measurement for SCOPA‐AUT subscales was 0.81 (sexual, men) – 2.26 (gastrointestinal). Conclusions: Despite its heterogeneous content, which determines some weaknesses in the psychometric attributes of its subscales, SCOPA‐AUT is an acceptable, consistent, valid and precise scale.     

Family caregiver burden and quality of home care in the context of the Long-Term Care insurance scheme: an overview

This review outlines the findings of 22 studies conducted between 1997 and 2005 by Arai and 19 collaborators regarding caregiver burden and assessment of quality of home care for the elderly. The published research covers the following: cross‐sectional studies on caregiver burden; changes in caregiver burden; appropriateness of the Long‐Term Care insurance assessment scheme; attitudes towards caregiving among caregivers; the development of the short Japanese version of the Zarit Caregiver Burden Interview (J‐ZBI_8); and the effectiveness of service use in reducing caregiver burden and development of a Home Care Quality Assessment Index (HCQAI).     

Coping style and health-related quality of life in caregivers of epilepsy patients

Epilepsy has a significant impact on health-related quality of life (HRQOL) of patients and personal coping style is an important determinant. Less is known about home caregivers. This study investigates HRQOL and coping style of both patients and caregivers and their interaction. Epilepsy patients attending the outpatient clinic of the University Medical Centre in Utrecht and their caregivers were sent EQ5D and RAND-36 questionnaires. The Utrecht Coping List was used to chart personal coping styles. HRQOL scores of patients and caregivers were compared to the general Dutch population. The association between patient and caregiver HRQOL scores was calculated. A stepwise backward multivariate linear regression analysis was used to explain variances in caregiver HRQOL. Eighty-six couples (49%) returned all questionnaires. Caregiver HRQOL scores were comparable to the general Dutch population (EQ5D: 0.88-0.88; p?=?0.90, RAND-36 MCS: -2 points; p?=?0.16), while patients HRQOL scores were lower (EQ5D: 0.79; p?相似文献   

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator

Objectives: The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan.

Method: This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal.

Results: Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant.

Conclusion: Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.