社区生活自理障碍老年人照顾者负担及其影响因素的调查

目的调查社区生活自理障碍老年人照顾者负担水平,探讨影响照顾者负担的相关因素。方法采用非实验性描述性研究,采用日常生活能力量表（ADL）、照顾者人口学资料调查问卷、照顾者负担量表（CBI）调查北京市2个社区72名生活自理障碍老年人及主要照顾者,并进行统计分析。结果72名照顾者轻度负担18名,中度负担50名,重度负担4名。女性照顾者负担大于男性照顾者,有配偶的照顾者比无配偶的照顾者的负担大,不在职照顾者的负担比在职照顾者负担大,自觉身体健康差的照顾者较自觉身体健康好的照顾者的负担大,差异均有统计学意义（P〈0．01或P〈0．05）;生活自理障碍的男性患者照顾者比女性患者照顾者负担大（P〈0．01）,患者ADL得分越高,照顾者的负担越大（P〈0．01）。结论生活自理障碍老年人的照顾者普遍存在不同程度的照顾负担,其总体负担水平处于中度;生活自理障碍老年人照顾者的负担受照顾者的性别、照顾者的婚姻状况、照顾者的自觉身体健康状况、照顾者职业状况、照顾对象的性别及其日常生活能力等因素的影响。     

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.     

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 - 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.     

Psychologically abusive behavior by those caring for the elderly in a domestic context

Psychological abuse of elders is a growing but hidden problem. This study attempted to determine whether caregivers psychologically abuse their elderly care recipients and identify risk factors contributing to such abuse. Ninety-two caregivers completed this study. The Demographic Sheet, the Caregiver Psychological Elder Abuse Behavior scale (CPEAB), and the Caregiver's Burden Scale were used to collect data. The CPEAB scores for caregivers of the elderly were 20 to 51 (mean 30.45 +/- 7.03). The level of abusive behavior was positively associated with gender, education level, and caregiver's burden and negatively correlated with age (P < .01-.05), suggesting that female caregivers, caregivers with higher levels of education, and caregivers with high burdens demonstrated more severe psychologically abusive behavior. Burden and age accounted for 25.9% of the variance for abusive behaviors. This study provides preliminary data estimating caregiver psychologically abusive behavior and its related risk factors. Analytical results provide important information for medical and social interventions and policies for improving the quality of life of elderly people.     

Caregiver burden of family members of persons living with HIV in Thailand

Lee S-J, Li L, Jiraphongsa C, Rotheram-Borus MJ. International Journal of Nursing Practice 2010; 16 : 57–63
Caregiver burden of family members of persons living with HIV in Thailand
Caregivers of people living with HIV (PLH) in Thailand face tremendous caregiver burden. This study examines complex ways in which caregivers' mental health affects their levels of caregiver burden. This study uses data from 409 caregivers of PLH in northern and north-eastern Thailand. Multiple regression models were used to examine the predictors of caregiver burden. Depression was significantly associated with caregiver burden ( P  < 0.0001) and being HIV positive ( P  = 0.015). Inverse associations were observed between depression and quality of life ( P  < 0.0001) and caregiver burden and quality of life ( P  = 0.004). Social support had direct positive association with caregiver's quality of life ( P  < 0.0001). Our findings underscore the complex relationship between caregiver burden, depression and HIV-status. Interventions that address the caregiver burden are urgently needed.     

Prevalence and predictors of anxiety and depression among family caregivers of cancer patients: a nationwide survey of patient–family caregiver dyads in Korea

Purpose

This study aimed to identify the prevalence and predictors of anxiety and depression among family caregivers of patients with cancer in Korea.

Methods

A national, multicenter, cross-sectional survey was conducted with 897 family caregivers. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression in patient–family caregiver dyads.

Results

The prevalence of anxiety in family caregivers was 38.1 %:20.3 % reported mild anxiety, 13.3 % reported moderate anxiety, and 4.6 % reported severe anxiety. The prevalence of depression was 82.2 %:40.4 % reported mild depression, 25.5 % reported moderate depression, and 16.3 % reported severe depression. Family caregivers who were younger, were caring for male patients, or had a low quality of life (QOL) in relation to three of the variables measured in the Korean Caregiver Quality of Life Index-Cancer (CQOLC-K): burden, disturbance, and financial concerns reported increased anxiety. Becoming unemployed during caregiving, being the spouse of a patient and having low QOL in relation to three of the variables measured by the CQOLC-K: burden, disturbance, and positive adaptation were associated with depression among family caregivers. The predictive validity of the selected variables were 0.861 (95 % CI: 0.844–0.892) for anxiety and 0.794 (95 % CI: 0.751–0.828) for depression.

Conclusions

Family caregivers of patients with cancer experienced high levels of anxiety and depression. Socio-demographic factors and QOL were predictors of anxiety and depression in family caregivers.     

Indicators of Health-Related Quality of Life in Heart Failure Family Caregivers

Indicators of caregiver health-related quality of life (HRQL) were identified among 50 caregivers of older patients living with heart failure (HF). Using a cross-sectional design, caregivers were interviewed for perceptions pertaining to caregiver burden, depressive symptoms, patient disease severity, and HRQL. Caregiver burden explained 62% of the variance in caregiver HRQL, adjusted R ² = .58, F (5, 44) = 14.54, p < .01. Caregiver depressive symptoms explained an additional 2% of variance in HRQL. Significant indicators of caregiver HRQL were in the burden domains of caregiver health and caregiver finances. The findings suggest the need for nurses to conduct caregiver health assessments to include screening for depression and assessment of the financial impact caregiving has on the caregiver. Interventions to improve caregiver health and lessen financial burdens should be investigated in future HRQL studies among HF caregivers.     

Anxiety and Depression Associated With Caregiver Burden in Caregivers of Stroke Survivors With Spasticity

Objective

To investigate the relationship between anxiety/depression and caregiver burden in informal caregivers of stroke survivors with spasticity.

Design

Data were collected via online surveys from informal caregivers 18 years or older who cared for stroke survivors.

Setting

Internet-based survey.

Participants

2007 through 2009 U.S. National Health and Wellness Survey database or Lightspeed Research general panel respondents (N=153).

Interventions

Not applicable.

Main Outcome Measures

Anxiety and depression were self-reported by the caregiver as a physician diagnosis. Depression severity was measured by the Patient Health Questionnaire-9 (PHQ-9). Caregiver burden was measured by the Oberst Caregiving Burden Scale (OCBS) and the Bakas Caregiving Outcomes Scale (BCOS). Logistic regression analyses were conducted with anxiety, depression, and the PHQ-9 depression severity categories as a result of each caregiver burden scale.

Results

Data were analyzed for 153 informal caregivers; they were mostly women (70.6%) and white (78.4%), with a mean age of 51.6 years. For every 1-point increase in the OCBS Difficulty Scale, the odds of anxiety or depression were 2.57 times as great (P<.001) and 1.88 times as great (P=.007), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 2.48 times as great (P<.001). For every 1-point decrease in the BCOS, the odds of anxiety or depression were 2.43 times as great (P<.001) and 2.27 times as great (P=.002), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 4.55 times as great (P<.001).

Conclusions

As caregiver burden increases, caregivers are more likely to have anxiety and depression. Depression severity also increases. Providing treatment to stroke survivors with spasticity that lessens the time and more importantly, the difficulty of caregiving may lead to a reduction in caregiver anxiety and depression.     

肝癌患者主要家庭照顾者的心理状态及社会支持与压力负荷的相关性分析

目的探讨肝癌患者主要家庭照顾者的心理状态、压力负荷以及社会支持的相关性。方法选择住院治疗的106名肝癌患者主要家庭照顾者为研究对象,应用-般资料调查问卷、症状自评量表（SCL．90）、照顾者压力指标（CSI）和社会支持量表进行调查评定。结果106名肝癌恩者主要照顾者SCL-90量表中躯体化（1．60±0．15）分,抑郁（1．76±0．42）分,焦虑（1．68±0．53）分,均高于江苏省常模,差异有统计学意义（t值分别为-2．844,-2．744,-3．587;P〈0．05）。主要照顾者CSI总分为（8．23±2．69）分,其中≥7分者占81．1％。主要照顾者的压力负荷与社会支持、心理状态与社会支持的各维度之间均呈负相关（r=-0．23--0．61;P〈0．05）,心理状态与压力负荷的各维度之间均呈正相关（r=0．11—0．63;P〈0．05）。结论肝癌患者主要照顾者存在不良心理健康状况,应采取更多的措施以提高照顾者社会支持水平,减轻其压力负荷。     

Comparing Perceived Burden for Korean and American Informal Caregivers of Stroke Survivors

Little is known about the burden of cross‐cultural care for stroke patients. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (using the Sense of Competence Questionnaire) and social support (using the ENRICHD Social Support Inventory) also were measured. The overall‐sense‐of‐burden‐from‐caregiving score was significantly higher in the Korean cohort than in the American cohort, as was the scale regarding satisfaction with the relationship with the recipient of care. The primary predictors of overall burden for the combined sample were caregiver and patient depression and insufficient social support. Lower perceived social support among Korean caregivers was strongly related to caregiver depression, while it was more strongly related to increased hours of caregiving in the American sample. These findings can help rehabilitation nurses plan supportive interventions that incorporate cultural values for stroke survivors and their caregivers.     

Examining Caregiver Outcomes in the CONNECT Intervention for Patients With Advanced Cancer

ContextPalliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood.ObjectivesTo determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer.MethodsIn this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0–48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0–21; HADS-D, range 0–21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0–189).ResultsWe enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07–0.29, P = 0.90), depression (adjusted mean difference -0.22, 95% CI -0.97–0.55, P = 0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25–1.43, P = 0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95–17.77, P = 0.030).ConclusionCaregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions.     

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended.     

脑卒中患者主要照顾者的负担和应对方式及其相关性分析

目的探讨脑卒中患者的主要照顾者的负担水平与应对方式以及二者的相关性。方法采用Zarit照顾者负担量表和简易应对方式问卷调查120位脑卒中患者的主要照顾者。结果脑卒中患者的主要照顾者的负担总分（39．54±13．88）分,86．7％的照顾者负担处于轻、中度水平;照顾者多采取积极应对方式应对负担,偶尔也采取消极应对方式;负担与积极应对方式呈负相关,与消极应对方式呈正相关,差异均有统计学意义（P〈0．01）。结论脑卒中患者的主要照顾者普遍存在不同程度的照顾负担,脑卒中患者主要照顾者的负担与其应对方式密切相关,护理工作者应正确引导照顾者采取适当的应对方式,减轻照顾负担。     

Pain in persons with dementia and the direct and indirect impacts on caregiver burden

ObjectivesUnresolved pain is related to neuropsychiatric symptoms (NPS) in persons living with dementia (PLWD), and an increase in NPS is distressing for PLWD and their caregivers. Hence, we examined whether pain in PLWD was related to caregiver burden and whether caregiver upset with NPS mediated this relationship.MethodWe examined, cross-sectionally, the relationships among pain in PLWD, caregiver burden, and upset with NPS. Data from 272 PLWD and their caregivers who participated in the Advancing Caregiver Training (ACT) trial were analyzed using structural equation modeling (SEM).ResultsModel fit was satisfactory, and caregiver upset with NPS fully mediated the association between pain in PLWD and caregiver burden.ConclusionCaregiver upset with NPS helps explain the relationship between pain in PLWD and burden in their caregivers. Pain and NPS are amenable to modification, as is caregiver burden, suggesting great opportunity to impact the lives of PLWD and their caregivers.     

脊髓损伤患者照顾者的照顾负担及其影响因素研究

目的调查脊髓损伤患者照顾者的照顾负担水平,并分析其影响因素。方法通过便利抽样法,采用生活自理能力量表、照顾者为患者提供护理情况问卷、一般自我效能量表、社会支持量表、Zarit护理负担量表和简易应对方式问卷,对150例脊髓损伤患者及其照顾者进行调查。结果脊髓损伤患者照顾者的照顾负担总分(52.91±11.56)分,88%的照顾者的负担处于中、重度水平;多元逐步回归分析显示,照顾者照顾负担的影响因素有:并发症、照顾时间、消极应对方式、患者的自理能力、照顾者的照顾能力、自我效能及积极应对方式。结论护理工作者应重视脊髓损伤患者照顾者的照顾负担,鼓励患者自理,增强社会支持系统,指导其采取积极的应对方式,以减轻照顾者的照顾负担。     

Relationships between family resilience,breast cancer survivors’ individual resilience,and caregiver burden: A cross-sectional study

BackgroundCaregivers of breast cancer survivors experience various types of burden, which in turn is linked to patients’ physical and psychological status. Family resilience might be able to decrease caregiver burden and facilitate survivors’ individual resilience, and individual resilience might be related to caregiver burden. Nevertheless, these relationships have not yet been confirmed.ObjectiveTo determine the relationships between family resilience, breast cancer survivors’ resilience, and principal caregivers’ caregiver burden, as well as determine whether breast cancer survivors’ individual resilience plays a mediating role in the relationship between family resilience and caregiver burden.DesignCross-sectional study design.SettingThe comprehensive cancer center of a public hospital in Shandong Province, China.ParticipantsThe sample comprised 108 dyads of early-stage breast cancer survivors and their principal caregivers.MethodsThe principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview, while the breast cancer survivors completed the 10-item Chinese version of the Connor-Davidson Resilience Scale and provided their sociodemographic information. The mediating effect of individual resilience was estimated using the bootstrap method via IBM SPSS Amos 21.0.ResultsCaregiver burden was significantly negatively associated with both family resilience and breast cancer survivors' individual resilience (both p < .01). Furthermore, individual resilience mediated the relationship between family resilience and caregiver burden (b = −0.052; 95% confidence interval: −.412, −.036).ConclusionsThe findings suggest that both family resilience and breast cancer survivors’ individual resilience may ease caregiver burden among the principal caregivers of breast cancer survivors, and family resilience tends to promote the survivors’ individual resilience. Therefore, family resilience and survivors’ individual resilience should be enhanced for breast cancer survivors and their family to ease the principal caregivers’ caregiver burden.     

先天性心脏病学龄前患儿主要照顾者负担及其影响因素分析

目的了解先天性心脏病学龄前患儿主要照顾者负担情况,探讨其影响因素。方法采用一般情况问卷、Zarit照顾者负担量表(Zarit caregiver burden interview,ZBI)对82名先天性心脏病学龄前患儿主要照顾者进行调查,采用多元线性逐步回归分析对照顾者负担的影响因素进行分析。结果 82名主要照顾者ZBI得分41~78分,平均(56.93±8.13)分,患儿年龄及主要照顾者文化程度、每天照顾患儿时间均是影响患儿主要照顾者负担的主要因素(P0.05)。结论先天性心脏病患儿主要照顾者的照顾负担较重,护理人员应从生理、心理方面给予患儿照顾者充分的关心和爱护,从而降低其照顾负担。     

Psychological Distress,Quality of Life,and Burden in Caregivers During Community Reintegration After Spinal Cord Injury

Objectives

To examine relations between psychological distress, health-related quality of life (HR-QOL), and burden among caregivers of people with traumatic spinal cord injury (SCI) over time, and to determine whether the data are more consistent with a wear and tear or adaptation trajectory.

Design

Prospective longitudinal cohort study with measurements at 4 time points (6wk prior to discharge from subacute inpatient rehabilitation and 6wk, 1y, and 2y postdischarge to community).

Setting

Rehabilitation units.

Participants

Participants (N=44; spouses, parents, others) nominated as a primary caregiver by the person with SCI.

Interventions

Not applicable.

Main Outcome Measures

General Health Questionnaire-28 (GHQ-28), Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), and Caregiver Strain Index (CSI) assessed the extent of psychological distress, HR-QOL, and burden, respectively, among caregivers. Functional status and community participation/care needs of the persons with SCI were assessed by the FIM and Craig Handicap Assessment and Reporting Technique, respectively.

Results

Multilevel piecewise models showed that psychological distress (GHQ-28 score) decreased significantly after discharge (slope estimate =−.03, P<.008). At the predischarge time point, the caregivers’ mental component summary score on the SF-36 was significantly lower than Australian national norms. The scores improved from predischarge to 6 weeks postdischarge (slope estimate =.39, P<.001), but they did not change significantly across the following 2 time points (slope estimate =.02, P=.250). At all 3 postdischarge time points, the mental component summary scores were not significantly different to national norms. In contrast, the physical component summary score of the SF-36 did not significantly change across the predischarge and 6-week postdischarge time points (slope estimate =−.14, P=.121) and the 3 postdischarge time points (slope estimate <.01, P=.947). Scores at all 4 time points were not significantly different to the national norms. Caregiver burden showed no significant change over the study period (predischarge to 6wk postdischarge slope estimate =.02, P=.426; 3 postdischarge time point slope estimates <−.01, P=.334). Reflecting this, 42% of caregivers met CSI caseness criterion at the first time point, and 46% met the criterion at the fourth (2y) time point. Higher burden was significantly correlated with increased hours of care being provided by the caregiver and lower FIM scores and lower community participation (for the person with SCI) at each time point. Psychological distress correlated with caregiver burden at 6 weeks and 1 year postdischarge but not at 2 years postdischarge.

Conclusions

The trajectory of scores for psychological distress and HR-QOL was consistent with caregiver adaptation to the challenge of providing support to a person with SCI in the early postdischarge period. Caregiver burden did not display similar reductions but did not worsen over the study period.     

Subjective responses to caregiving for a spouse with dementia

Family members, typically spouses, serve as the primary caregivers for individuals with dementia. While it is recognized that caregivers experience both positive and negative subjective responses to caregiving, relatively little research has been done on the relationship between these types of responses. The objectives of the study were to examine the relationships between and among spouse caregivers' positive and negative subjective responses to caregiving, and increase understanding of the experience of being a spouse caregiver for a person with dementia. Fifty spouse caregivers completed quantitative measures of positive subjective responses (Positive Aspects of Caregiving and Caregiver Competence) and negative subjective responses (Relational Deprivation, Role Captivity, and Loss of Self). Additionally, participants were interviewed concerning their caregiving experiences. Positive Aspects of Caregiving and Caregiving Competence were significantly related to each other (p < .01), as were the three measures of negative subjective responses (p < .01). No significant correlations were found between any measures of a positive and a negative subjective response, suggesting the two types of responses are independent. Duration of caregiving was significantly related to Positive Aspects of Caregiving (p < .05), Caregiver Competence (p < .05), and Relational Deprivation (p < .01). Qualitative interview data revealed that participants simultaneously experienced caregiving as self-affirming, while also enduring losses and difficulties resulting from their caregiving role. Integrating the positive and negative aspects of the whole of caregiving is important to understand the caregiving experience and to design interventions to support caregivers.