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.     

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.     

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.     

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。     

Factors affecting the burden on caregivers of stroke survivors in South Korea

OBJECTIVE: To elucidate the factors related to the caregiver burden in stroke survivors in Seoul, Korea. DESIGN: Cross-sectional study. SETTING: Outpatient clinic of a university hospital in Korea. PARTICIPANTS: We randomly selected 340 stroke patients and evaluated them for 3 years poststroke. Among them, 147 caregivers and patients were finally interviewed. INTERVENTIONS: Patients' demographic data, neurologic symptoms, depression, emotional incontinence, and Modified Rankin Scale (MRS) score were assessed. In addition, primary caregivers' demographic data, hours of care per day, relationship with the patients, health status, anxiety and depression, and the presence of alternative caregivers were assessed. MAIN OUTCOME MEASURES: Caregiver burden was evaluated with the Sense of Competence Questionnaire, which has 3 subdomains with a total of 27 items. RESULTS: Caregiver burden score was high as compared with reports from Western society. Patient factors related to the burden scores were being unemployed ( P <.05), the presence of diabetes mellitus ( P <.05), aphasia ( P <.01), dysarthria ( P <.05), dysphagia ( P <.01), cognitive dysfunction ( P <.01), severe MRS score ( P <.01), emotional incontinence ( P <.05), and depression ( P <.01). Caregiver factors related to high burden scores were being female ( P <.05), unemployment ( P <.01), being daughters-in-law ( P <.01), anxiety ( P <.01), depression ( P <.01), and long caregiving hours ( P <.05). On multivariate analysis, the most significant predictor for overall caregiver burden was caregiver anxiety followed by patient MRS score and caregivers being daughters-in-law. Caregiver depression, current employment status, and patient depression were also factors related to their burden. CONCLUSIONS: Caregiver anxiety, patient physical deficits, and caregivers being daughter-in-law are important factors related to the caregiver burden in our population. Strategies to reduce caregiver burden should be developed based on understanding of these factors.     

The mediating effect of caregiver burden on the caregivers’ quality of life

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver’s QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers’ QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers’ QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers’ well-being.Key words: Caregivers, Stroke, Quality of life     

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.     

The self-efficacy of family caregivers for helping cancer patients manage pain at end-of-life

This preliminary study examined the self-efficacy of family caregivers with regard to helping cancer patients manage pain at end of life. A sample of 63 family caregivers of hospice-eligible cancer patients with pain provided ratings of their self-efficacy in assisting the patient in pain management and rated their own mood and level of caregiver strain. Patients completed measures of pain and quality of life. Data analyses revealed that caregivers who rated their self-efficacy as high reported much lower levels of caregiver strain as well as decreased negative mood and increased positive mood. Caregiver self-efficacy in managing the patient's pain was related to the patient's physical well-being. In dyads where the caregiver reported high self-efficacy, the patient reported having more energy, feeling less ill, and spending less time in bed. Considered overall, the results of this study suggest that caregiver self-efficacy in pain management is important in understanding how caregivers adjust to the demands of caring for cancer patients who have pain at the end of life.     

Self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their informal caregivers: associations with symptoms and distress

This study examined self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their caregivers, and associations between self-efficacy and patient and caregiver adjustment. One hundred and fifty-two patients with early stage lung cancer completed measures of self-efficacy, pain, fatigue, quality of life, depression, and anxiety. Their caregivers completed a measure assessing their self-efficacy for helping the patient manage symptoms and measures of psychological distress and caregiver strain. Analyses indicated that, overall, patients and caregivers were relatively low in self-efficacy for managing pain, symptoms, and function, and that there were significant associations between self-efficacy and adjustment. Patients low in self-efficacy reported significantly higher levels of pain, fatigue, lung cancer symptoms, depression, and anxiety, and significantly worse physical and functional well being, as did patients whose caregivers were low in self-efficacy. When patients and caregivers both had low self-efficacy, patients reported higher levels of anxiety and poorer quality of life than when both were high in self-efficacy. There were also significant associations between patient and caregiver self-efficacy and caregiver adjustment, with lower levels of self-efficacy associated with higher levels of caregiver strain and psychological distress. These preliminary findings raise the possibility that patient and caregiver self-efficacy for managing pain, symptoms, and function may be important factors affecting adjustment, and that interventions targeted at increasing self-efficacy may be useful in this population.     

Life satisfaction and strain among informal caregivers of patients with traumatic brain injury in Malaysia

Purpose: This study aims to determine the life satisfaction and strain on informal caregivers when caring for traumatic brain injury (TBI) patients and to examine the factors predicting the level of strain among the informal caregivers.

Method: A cross-sectional survey on a purposive sampling was performed in a single centre in Malaysia recruiting caregivers of patients with TBI. Life Satisfaction Questionnaire-9 and Caregiver Strain Index questionnaires were used to ascertain the life satisfaction and strain of caregivers respectively. Relationship between life satisfaction and strain was analysed, together with factors significantly associated with strain.

Results: A total of 141 caregivers (77.3% women, average age of 46.1 years?±12.8 and mean duration of caregiving of 24.8 months?±?14.3) were included in the analysis. Most caregivers (75%) were satisfied with their lives but more than half claimed to have strain (57%). There was a significant relationship between life satisfaction and strain among the caregivers (p?p?=?0.04), presence of patient’s neurobehavioural disturbances (OR 4.48, 95% CI 1.60–12.55, p?=?0.004) and cognitive dysfunctions (OR 31.72, 95% CI 10.27–97.96, p?Conclusion: Caregivers with lower monthly income and caring for TBI patients with cognitive and neurobehavioural disturbances are at higher risk of developing strain. Rehabilitation interventions post-discharge should aim at supporting the caregivers at risk.

• Implications for Rehabilitation

• Informal caregivers of patients with traumatic brain injury who are not satisfied with their lives are most likely experiencing strain.

• Caregivers in Malaysia who are at high risk of experiencing strain are those with lower monthly income and care for patients with significant cognitive and neurobehavioural disturbances.

• Efforts to reduce strain in caregivers at risk should be included in the post-discharge rehabilitation programme in Malaysia.

     

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.     

Impact of Alzheimer disease patients' sleep disturbances on their caregivers

Sleep disturbance symptoms are common in persons living with Alzheimer disease (AD). However little is known about the impact of sleep disturbance symptoms in patients living with AD on caregiver burden and quality of life (QOL). The aims of this study were to determine the prevalence of symptoms of disturbed sleep in patients with AD, identify the care-recipient sleep disturbance symptoms that predict caregiver burden and QoL, and determine how care-recipient sleep disturbance symptoms compare to other caregiver and patient characteristics when predicting caregiver QoL. Caregiver burden was assessed using the Screen for Caregiver Burden. Sixty percent of the care-recipients had at least one sleep symptom. In 130 caregiver/patient dyads, nocturnal awakenings, nocturnal wandering, and snoring predicted caregiver burden. Multivariate modeling demonstrated that caregiver burden, caregiver physical and mental health, and caregiver depression were predictors of overall caregiver QoL. Treating disturbed sleep in care-recipients and caregiver mental health symptoms could have important public health impact by improving the lives of the caregiving dyad.     

Evolution of the caregiving experience in the initial 2 years following stroke

Relationships between stroke survivor and family caregiver factors and the caregiver's health-related quality of life (HRQL) and overall quality of life (QoL) were examined in 97 dyads during the first and second years after stroke. Compared to age- and sex-matched population norms, caregivers scored significantly lower on the mental subscales of HRQL, and differences were greater for women than for men. Caregiver characteristics (older age, less burden, and fewer physical symptoms) were associated with better HRQL (mental summary scale) in the first year, with similar findings in the second year. Moderate stroke survivor physical impairment and caregiver characteristics (younger age and better HRQL) were associated with better QoL in the first year. During the second year poorer caregiver physical and mental health and caring for a stroke survivor with communication difficulties were associated with diminished QoL.     

Effect of integrated caregiver support on caregiver burden for people taking care of people with cancer at the end of life: A cohort and quasi-experimental clinical trial

BackgroundPrevious studies have shown small-to-medium effects of support on reducing the caregiver burden for advanced cancer patients. A dearth of studies utilized longitudinal design to examine and evaluate the effect of support for the caregiving burden till the patient's death.ObjectivesTo test the ability of an integrative intervention program for caregivers of advanced cancer patients to lower caregiving burden as death approaches.DesignA two-group comparative design with repeated measures.SettingTwo cancer wards of a single university hospital.ParticipantsAdvanced cancer patients (N = 81) and their caregivers were allocated into two groups: an experimental group (N = 40) receiving coping strategies, assistance, recourses, and education intervention and a control group (N = 41) receiving standard care.MethodsCaregivers received training in the caregiver support intervention at least 3 times every 2 weeks to help them reduce their caregiving burden. Subjective (Caregiver Reaction Assessment) and objective (Heart Rate Variability) measures of caregiver burden were evaluated for caregivers of patients approaching death. Only data within 3 months before the patients’ death were analyzed.ResultsCaregiver self-efficacy significantly increased and the subjective caregiving burden significantly decreased in the experimental group as patients’ death approached. Heart Rate Variability also indicated a calming effect of the intervention, helping caregivers face patients’ death.ConclusionsThe caregiver support intervention can increase caregiver self-efficacy and reduce the subjective caregiving burden. Heart Rate Variability parameters have the potential to be useful for monitoring caregiver burden in facing patients’ death.     

Quality of life in patients with multiple sclerosis in Eastern Slovakia

Purpose.?Quality of life (QoL) is an important measure of the burden of disease and could be useful in evaluating patient management and practical interventions. The aim of this study was to explore the association of psychological and clinical variables with QoL in patients with multiple sclerosis (MS).

Methods.?One hundred and fourteen consecutive patients (mean age 36.1 ± 10.3 years, 72%% female) from one MS centre completed the Hospital Anxiety and Depression Scale, the Fatigue Severity Scale and the Short-Form-36 Health Survey (SF-36). Functional disability was assessed using the Expanded Disability Status Scale. Multiple linear regression analyses were performed to analyse demographic, psychological and clinical data.

Results.?Functional disability, depression and fatigue were found to be related inversely to the physical health subscale. Disease course, anxiety and depression were associated negatively with the mental health subscale.

Conclusions.?Functional disability, depression and fatigue were the main variables related to the perceived physical health subscale, and disease course, anxiety and depression to the perceived mental health subscale in the group of patients with MS. Thus, effective treatment of fatigue, anxiety and depression could be assumed to increase a patient's QoL.     

The Impact of Stigma on Community Reintegration of Veterans With Traumatic Brain Injury and the Well-Being of Their Caregivers

Objective

To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration.

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.     

Caregiver perceptions of accomplishment from assisting people with multiple sclerosis

Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.

Implications for Rehabilitation

• Assistance from informal caregivers enables people with multiple sclerosis to remain in their homes as their functional dependence becomes more permanent and their need for personal assistance increases.

• Caregiver perceptions that assisting the person with multiple sclerosis was emotionally draining and a spousal relationship were significantly associated with negative perceptions of accomplishment.

• Health professionals who treat informal caregivers, as well as health professionals treating people with multiple sclerosis, should be sensitive to the impact care giving has on the emotional health of caregivers, especially spousal 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.