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.     

Stroke caregivers' strain: prevalence and determinants in the first six months after stroke

Purpose. Many disabled stroke survivors live at home supported by informal caregivers. Research has revealed that these caregivers are experiencing strain. This study aims to examine the prevalence and differences over time of caregivers' strain in the first 6 months post-stroke and to predict caregiver strain based on patients' and caregivers' characteristics and service input.

Method. Ninety consecutive patients and their caregivers were assessed at 2, 4 and 6 months post-stroke. The Caregiver Strain Index was used to evaluate strain. Patients' motor function, functional ability, health status, emotion and participation and caregivers' gender and relation to the patient and service input after discharge were measured to determine the predictive factors.

Results. Nearly one out of three caregivers experienced strain. No differences were seen between 2, 4 and 6 months post-stroke. Correlation and multiple regression analyses revealed that in predicting strain, the patients' functional and activity level plays an important role in the sub-acute phase while the participation level gets more important over time.

Conclusions. These findings emphasize the importance of maximal physical recovery and optimal reintegration in the community. This is not only essential for the patients themselves but also a pre-requisite to reduce the strain of their caregivers.     

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.     

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.     

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。     

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.     

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.     

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.     

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.     

Experiencing the loss of mobility: perspectives of older adults with MS

Purpose : The purpose of this study was to develop an understanding the experience and meaning of mobility loss among older adults with multiple sclerosis (MS). This work is part of a larger study on the health concerns and service needs of older adults with MS.

Methods : Twenty-seven people with MS (mean age = 62 years, range = 55 - 82) were interviewed using a phenomenological approach.

Results : Thematic analysis found that three factors contributed to participants' experience of mobility as a person with MS: reality of having MS, mobility needs, and contextual factors. Participants discussed how the reality of MS meant variability in their ability to get around and the importance of trying to remain in control over their mobility experiences. The experience of mobility lead participants to mourn losses, take action, and contemplate their futures. They expressed concerns about the continual declines in their mobility, losing independence, becoming a burden on caregivers, and the potential for having to move into a nursing home.

Conclusions : Findings provide insight into the experience of mobility loss among older adults with MS, and point to potential strategies that can be used to help people cope with and adapt to these losses.     

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.     

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     

Measuring participation in people living with multiple sclerosis: a comparison of self-reported frequency, importance and self-efficacy

Purpose. To compare three dimensions related to participation in everyday situations in community-dwelling adults with multiple sclerosis (MS).

Methods. Mail survey was obtained from 112 respondents. Data were analyzed using Kendall's tau-b correlation coefficients between responses to participation items relative to three question dimensions (importance, frequency, and self-efficacy) and criterion variables (mobility, depression, general health, fatigue and pain).

Results. No significant associations were found between item responses in the importance dimension and the criterion variables. Weak associations were found for items in the frequency dimension, and stronger associations were found for items in the self-efficacy dimension.

Conclusions. Different dimensions of participation in specific life situations yielded different responses and associations of those responses with key criterion measures. Subjective importance of participating in everyday situations is relatively independent of measures of mobility, general health, depression, fatigue and pain. Subjective judgments of self-efficacy for participation are more closely linked to these criterion measures. Caution is warranted when interpreting scales of participation because participation is a complex construct, potentially composed of several dimensions.     

Factors associated with caregiver burden in heart failure family caregivers

Fifty caregivers and 41 heart failure patients participated in a study examining the association of caregiver characteristics and the caregiving environment on caregiver burden. Using a cross-sectional design, caregivers were interviewed face-to-face using a caregiver characteristic/demographic tool designed for this study, the Centers for Epidemiological Studies Short Depression Scale, the Caregiver Reaction Assessment questionnaire, and the New York Heart Association Functional Classification Guide to obtain the caregiver's perception of patient disease severity. Patient medical records were assessed following caregiver interviews for patient demographics, comorbidities, and ejection fraction percentages. Significantly higher levels of burden were found among Caucasian caregivers, those caring for other relatives besides the patient, unemployed caregivers, and single- versus two-family caregivers (respite caregiving). Fifty-one percent of the variance in caregiver burden was accounted for by the variables caregiver advanced age, higher caregiver hours, more caregiver physical health problems, higher levels of caregiver depressive symptoms, and more patient comorbidities. This article concludes with implications for nursing practice and future research.     

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.     

Living setting and utilisation of ADL assistance one year after a stroke with special reference to gender differences

Purpose. To examine living setting and need for ADL assistance before and one year after a first-ever stroke with special focus on gender differences.

Methods. One-year survivors from a population-based stroke study (n = 377) were studied with regard to place of living, need for ADL assistance and who provided the help. Stroke severity, cognitive impairment, post-stroke depression as well as risk factors were evaluated.

Results. Before the stroke 48 patients (13%) lived in special housing (service flats or nursing homes), and one year after the stroke, 50 of the survivors (20%) lived in such accommodations. Before the stroke, 80 (21%) of the patients needed help with their personal ADL, while 90 (36%) needed help after one year. The increased need was fulfilled by relatives. Female spouses more often helped their male counterparts, and they tended to accept a heavier burden. Age, living alone, stroke severity, cognitive impairment, pre-stroke ADL dependency and depression were predictors for special housing.

Conclusions. In a time when more and more stroke survivors are cared for at home, it is important to pay attention to the situation of the caregivers. Female caregivers seem to be in an especially exposed position by accepting a heavier burden.     

Informal caregiving in multiple sclerosis patients: data from the Madrid Demyelinating Disease Group study

PURPOSE: To describe the profile of Multiple Sclerosis (MS) patient caregivers and assess their caregiving burden. METHODS: A total of 91 MS patients, recruited from a Spanish longitudinal survey, and their corresponding caregivers were studied. Caregivers were administered a questionnaire that collected social and demographic data, and a generic caregiver burden interview (the Zarit scale). Furthermore, MS patients were administered a specific health-related quality of life (HRQoL) instrument (the modified Spanish version of the Functional Assessment of Multiple Sclerosis). RESULTS: 24.5% of the sample required caregivers to perform activities of daily life. Caregiver profile was as follows: 67% female; mean age, 51.5 +/- 14.1 years; and mean daily time devoted to care, 11.5 +/- 8.2 h. Most caregivers had some type of support, 67% informal and 31.9% formal. The amount of time spent in caring for relatives was the main item determining the burden of MS-patient caregivers. Moreover, MS patient's HRQoL showed a moderate inverse correlation with caregiver burden. CONCLUSIONS: In contrast to previous studies, most Spanish MS-patient caregivers are female, and there is a considerable percentage of parent caregivers. A greater degree of formal support and an improvement in MS patients' HRQoL may serve to reduce caregiver burden.     

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.     

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.