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1.
Caregiver burden during the year following severe traumatic brain injury   总被引:1,自引:0,他引:1  
Fifty-two primary caregivers of people with a severe traumatic brain injury (TBI) were assessed at 6-months and 1-year postinjury. Caregiver appraisal of the person with TBI's physical, cognitive, emotional, behavioural, and social functioning was assessed. Caregiver psychosocial functioning and levels of subjective and objective burden were also assessed. Some aspects of the difficulties reported for the people with TBI remained stable, while others increased in frequency, over time. At 6-months postinjury, approximately one third of caregivers reported clinically significant symptoms of anxiety and depression, and poor social adjustment. By 1-year postinjury, the prevalence of anxiety and depression remained the same, although only one-quarter continued to report poor social adjustment. There was some evidence of adaptation by caregivers, as the frequency with which various types of objective burden were reported remained stable, while the distress caused by these decreased in the first year postinjury. It appears that the impact on caregivers of physical impairment is comparatively short-lived and that caregivers learn some practical ways to manage the behavioural problems of the people with TBI. Despite this, over time the person with TBI's behavioural and cognitive problems begins to play a larger role in the level of distress experienced by the caregiver. However, it is the person with TBI's social isolation that has a stable and consistent role in the experience of subjective burden for primary caregivers in the first year postinjury.  相似文献   

2.
Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N = 120) participated. Years postinjury ranged from 0.3 to 9.9 (M = 4.8, SD = 2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.  相似文献   

3.
Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N=120) participated. Years postinjury ranged from 0.3 to 9.9 ( M=4.8, SD=2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.  相似文献   

4.
Objectives: To investigate caregiver burden in dementia and explore factors associated with different types of burden in a country without formal caregiver support using a province in China as a case.Method: Cross-sectional questionnaire survey was used to collect data. One hundred and fifty-two family caregivers of people with dementia in community settings were recruited from 2012 to 2013 using convenience sampling. Objective burden was measured by caregiving hours and dementia-related financial burden. Subjective burden was measured and analysed using the Caregiver Burden Inventory and the Neuropsychiatric Inventory-Questionnaire. Multivariate regression models were employed to analyse factors associated with each type of subjective burden.Results: Five types of subjective burden were measured by the Caregiver Burden Inventory, namely, physical burden, emotional burden, time-dependence burden, developmental burden, and social burden. Caregiver distress, as a subjective burden, was measured by the Neuropsychiatric Inventory-Questionnaire and reported by relating to the severity of care recipients’ behavioural and psychological symptoms of dementia. This caregiver cohort showed a high level of physical, time-dependence, and developmental burdens, but a low level of emotional and social burdens. Factors contributing to each type of subjective burden measured by the Caregiver Burden Inventory differed from each other.Conclusion: The high level of objective and subjective burdens identified in this study suggests that government-funded formal caregiver support should be established and services should be designed to target different types of burdens and factors contributing to these burdens.  相似文献   

5.
Proximal spinal muscular atrophy (SMA) causes severe physical limitations but also has a major impact on the lives of parents. The aim of this study was to investigate participation and mental well-being (burden, emotional distress and satisfaction with participation) of parents of home-living patients with SMA. Caregiver burden was assessed with the Caregiver Strain Index, emotional distress with the Hospital Anxiety and Depression Scale and satisfaction with participation with the Utrecht Scale for Evaluation of Rehabilitation-Participation. Because the majority of parents were mothers of home-living SMA patients (76%), further analyses were restricted to mothers. Seventy-seven percent of mothers of patients with SMA had paid work. A substantial proportion of mothers (76%) perceived high caregiver burden. Burden, emotional distress and satisfaction with participation were comparable between mothers of children and mothers of adults with SMA. Caregivers’ participation in leisure activities was significantly related to their perceived level of caregiver burden, emotional distress and satisfaction with participation. Mothers engaging in more social and leisure activities reported lower emotional distress and caregiver burden. Considering the high level of burden attention should be paid to mental well-being of primary caregivers of patients with SMA. Caregivers should be motivated to keep participating in social/leisure activities.  相似文献   

6.
Perception of caregiving after traumatic brain injury (TBI) has been shown to be an important part of both survivor and family adjustment. The roles of coping style, family functioning, perceived social support and the TBI survivor's functional status have not been fully examined with respect to appraisal of caregiving. This study examined these factors with respect to both positive and negative appraisals of caregiving in four main areas: perceived burden, caregiving relationship satisfaction, beliefs about caregiving, and mastery with caregiving. Sixty primary caregivers of individuals who sustained a TBI within the last 6 months to 15 years were administered the Caregiver Appraisal Scale, as well as the Coping Inventory for Stressful Situations, a 21-item version of the Family Assessment Device, and the Social Provision Scale. These findings were examined in relation to the TBI survivor's scores on the Disability Rating Scale and the Functional Independence Measure at the same time points post-injury. Results revealed that the majority of caregivers in those with moderate to severe brain injuries experienced dissatisfaction with many aspects of caregiving, especially with respect to feelings of burden and mastery. Additionally, emotionally-focused coping, behavioral control issues with respect to family functioning, and perceived social support appear to be most highly related to perceptions of burden, whereas perceived social support alone was the strongest factor in one's perception of caregiving mastery and satisfaction with the caregiving relationship. Interestingly, caregiving ideology was most closely related to avoidance-oriented coping. These results have direct implications for the development of interventions for caregivers of persons with TBI, especially with respect for the need to assess coping style and the development of social support networks.  相似文献   

7.
OBJECTIVES: We investigated the influence of demented people's function and caregiver burden on caregivers' psychological distress. Based on a modified model of Pearlin and colleagues (1990), we assessed the stress of demented people's caregivers in Korea. METHODS: A total of 122 demented people and their caregivers participated in this study. We evaluated dementia severity by the Clinical Dementia Rating (CDR), and caregivers reported their objective and subjective stressors. Objective stressors are the demented people's functional deterioration and behavioral problems, and subjective stressors are caregivers' reaction to objective stressors and the subjective burden in caregiving. The overall psychological distress of caregivers was evaluated by the Beck Depression Inventory (BDI) and the Spielberger Trait Anxiety Inventory-State (STAI-S). RESULTS: There were significant differences in both objective and subjective stressors according to the severity of dementia, but there was no significant difference in caregivers' psychological distress. The goodness-of-fit evaluation model showed the coping and social support variables affected the psychological distress as mediator variables (df = 109, chi (2) = 209.75, NFI = 0.949, RFI = 0.929, IFI = 0.975, TLI = 0.964, RMSEA = 0.087). CONCLUSION: The model suggests that psychological distress of caregivers is related to diverse variables, such as objective and subjective stressors, coping, and social support. This study provides verification of the modified model of Pearlin and coworkers in Koreans, and lays a foundation for practical use and further study.  相似文献   

8.
OBJECTIVE: The aims of this study are to characterize the levels of emotional distress and quality of life among caregivers of lung transplant candidates and to examine the relation of coping styles and perceived caregiver burden to caregivers' self-reported emotional distress. METHODS: A consecutive series of primary caregivers of potential lung transplant candidates completed a battery of psychosocial measures, including the Beck Depression Inventory-II (BDI-II), State-Trait Anxiety Inventory, Medical Coping Modes Questionnaire (MCMQ), Scale for Caregiver Burden (SCB), and Medical Outcomes Survey, Short Form-36 (SF-36). RESULTS: Only 12 of the 82 caregivers (14.6%) who volunteered for the study reported clinically significant levels of depression (BDI-II > or =14), and only 2 caregivers (2.4%) reported clinically significant levels of anxiety (STAI > or =60). Passive coping strategies were associated with higher levels of emotional distress; specifically, resignation was associated with increased depression (r=.27, P<.04), while avoidance was associated with increased anxiety (r=.29, P<.04). In addition, caregivers who reported greater perceived caregiver burden experienced higher levels of depression (r=.45, P<.001) and anxiety (r=.43, P<.01). Moreover, the social functioning of caregivers of lung transplant patients was more than one standard deviation from a normative sample of the population (Cohen's d=1.16), indicating that caregivers of transplant patients experienced greater impairment in this area. DISCUSSION: Although most caregivers of transplant patients do not report significant impairment in functioning, assessing caregivers' coping strategies and caregiving burden may identify those caregivers who experience increased emotional distress.  相似文献   

9.
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.  相似文献   

10.
Caregiver burden has been studied extensively in family caregivers of Alzheimer's patients. Behavioral disturbances have been widely reported to be a source of distress and burden for family caregivers. However, the study of the effects of behavioral disturbance on distress for professional caregivers in long-term care facilities has been relatively ignored. This study was conducted to evaluate the effects of neuropsychiatric symptoms among patients with dementia on distress in nursing home caregivers. One hundred and five professional caregiver interviews were done in order to assess distress related to the frequency and severity of neuropsychiatric symptoms in one 125-bed proprietary nursing home staffed according to industry standards. Twelve licensed vocational nurses (LVNs) and 12 certified nurses aids (CNAs) were interviewed regarding 69 nursing home residents using the Neuropsychiatric Inventory-Nursing Home Version (NPI-NH). Agitation and apathy were found to be the two most distressing behaviors for both the LVNs and CNAs, but while the level of distress for the LVNs approaches that reported by family members in other published research, the CNAs report very little overall distress. In summary, professional caregiver distress appears to be a significant problem in LVN caregivers in long-term care settings.  相似文献   

11.
The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n?=?31 parents, n?=?21 partners/spouses; 77% female; mean age?=?57.96 years, range?=?34–78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.  相似文献   

12.
Do caregiver management strategies influence patient behaviour in dementia?   总被引:2,自引:0,他引:2  
OBJECTIVES: Little is known about the effectiveness of caregiver management strategies on the functioning of the demented patient. However, identification of specific caregiver strategies may provide useful information on the management and manifestation of behavioural problems in dementia. METHODS: Ninety-nine patients with dementia and their informal caregivers were followed up for one year. Interviews were used to assess differences in caregiver management strategies. Behavioural disturbances in the patient were measured with the Neuropsychiatric Inventory (NPI). Repeated measures analysis were carried out to investigate the relationship between caregiver management strategies and patient behaviour. RESULTS: Three caregiver management strategies were identified, based on whether caregivers accepted, or not, the caregiving situation and dementia related problems. Caregivers characterized by non-acceptance were typified as 'Non-adapters'; caregivers characterized by acceptance were further subdivided into two groups typified as 'Nurturers' and 'Supporters'. Caregiver characteristics such as sex, education and personality were important determinants of management strategies. MANOVA showed that non-adapters reported significantly more hyperactivity symptoms in patients and felt less competent than did supporters. CONCLUSIONS: Caregiver management strategies would appear to be associated with behavioural problems in dementia, and are important in predicting patient behaviour and caregiver burden. Intervention programmes should aim at teaching caregivers adequate management strategies.  相似文献   

13.
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.  相似文献   

14.
In studies on caregiving, high levels of perceived burden are commonly considered as synonymous with poor well-being. This study aimed at better disentangling the relationship between burden and well-being dimensions through their joint investigation. To this purpose, perceived well-being and social resources were evaluated among caregivers reporting different levels of burden. Participants were 91 caregivers (mean age = 50.4; SD = 9.6), parents of people diagnosed with severe neuromotor and cognitive disorders. Participants completed a semi-structured interview and a set of scaled questionnaires: Caregiver Burden Inventory (CBI), Satisfaction with Life Scale, Positive and Negative Affect Schedule, Depression Anxiety Stress Scale, Eudaimonic and Hedonic Happiness Investigation, Resilience Scale for Adults, and Multidimensional Scale of Perceived Social Support. Participants were divided into two groups according to their perceived burden level, assessed through CBI. In both groups, the subjective components of burden accounted for the major fraction of the total burden level. Participants perceiving high burden reported higher levels of depression related emotions, lower life satisfaction and lower resilience than participants perceiving low burden. No group difference emerged in perceived meaningfulness and social support. A regression analysis showed that the best predictor of perceived burden was life satisfaction, followed to a lesser extent by resilience, while depression related emotions did not provide significant contribution. Findings suggest that the joint assessment of burden and well-being dimensions, that are co-existing in caregivers’ experience, allow for the identification of personal and relational resources that can be usefully included in interventions addressed to caregivers.  相似文献   

15.
Comprehensive Alzheimer's disease (AD) treatment should address caregiver well-being. We predicted that caregiver burden would be lower among caregivers of AD patients who received donepezil relative to caregivers of patients not treated with donepezil. A self-administered, nationwide survey of AD caregivers was used to match caregivers of patients treated with donepezil (n = 274) to caregivers of patients not treated with donepezil (n = 274). The Caregiver Burden Scale measured time demands and distress linked to commonly performed caregiving tasks. Respondents were three-quarters female, with an average age of 60 years. Results demonstrated that donepezil caregivers reported significantly lower scores on difficulty of caregiving. This difference remained when statistical controls for multiple patient and caregiver variables were imposed. However, selection factors must be recognized as a possible explanation for differences. The groups reported no difference on the time-demand subscale. In conclusion, better management of AD symptoms through donepezil treatment may reduce the burden of caregiving, providing physicians with a pharmacologic approach to improving quality of life for AD patients and their families.  相似文献   

16.
This study investigated attentional impairments and recovery in pre-school children following traumatic brain injury (TBI). Children aged between 3-8 years were assigned to two groups on the basis of severity of injury: (i) mild TBI and (ii) severe TBI. Children were evaluated at the acute stage postinjury (0-3 months) and again at 6 months on a range of standardized intellectual and attention measures. In addition, a specifically developed behavioural attention measure was employed. Results revealed a tendency for children with severe injuries to exhibit greater attentional impairments in the acute phase post-injury. In addition, children who sustained a severe TBI demonstrated significant recovery in attentional functioning over time. Results indicated differential recovery rates for separate components of attention. Both groups demonstrated a trend towards recovery of arousal and motivation over time, while focused attention, impulsivity and hyperactivity remained stable.  相似文献   

17.
OBJECTIVE: The aims of this study were to measure changes over 3-years in caregiving burden and emotional distress in relatives of people with schizophrenia and to identify factors predicting the levels of caregiving burden. METHOD: A cohort of 51 caregivers of patients with schizophrenia attending the South-Verona Community Mental Health Service was assessed over 3-years with the Involvement Evaluation Questionnaire, European Version. Predictors of caregiving burden included both caregivers' and patients' characteristics and patterns of carer-patient interaction. RESULTS: Baseline levels of family burden were high in worrying and urging domains. Fifty-one per cent of caregivers experienced significant emotional distress. Both overall burden and emotional distress improved. Higher patients' psychopathology, higher numbers of patient-rated needs, patients' lower global functioning and patients' poorer quality of life were found to be related to the severity of family burden. The only significant predictor of caregivers' burden at follow-up was the baseline level of caregivers' burden itself. CONCLUSION: A policy addressing the caring burden of informal caregivers beyond patients' symptoms reduction should be considered.  相似文献   

18.
The objective was to evaluate the course and severity of dementia-related symptoms and their relationship to caregivers' subjective burden and depression over time. Forty-five patients with dementia and their caregivers were followed over a period of 2 years. Patients' cognition, function, and behavioral/psychological symptoms were assessed by the Mini Mental State Examination, Syndrome Kurz Test, Geriatric Depression Screening scale, Instrumental Activities of Daily Living Scale, Physical Self Maintenance Scale, Behavioral Abnormalities in Alzheimer's Disease Rating Scale, and Nurses Observation Scale for Geriatric Patients. Caregivers' depression and subjective burden were evaluated by the Geriatric Depression Screening scale or Beck Depression Inventory and the Caregiver Burden Interview. Global dementia severity, functional impairment, and behavioral disturbances increased significantly over the 2-year observation period. Caregivers' burden remained stable, and severe depression decreased over time. There were significant associations between burden and dementia-related symptoms. For deficits in activities of daily living as well as behavioral disturbances, these associations became stronger over time. It was concluded that stage of dementia, functional deficits, and behavioral disturbances are important factors when evaluating the relationship between patients' symptoms and caregivers' well-being.  相似文献   

19.
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.  相似文献   


20.
BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are a source of distress and burden for caregivers. This study attempts to determine the neuropsychiatric symptoms, demographic characteristics, and referral patterns of outpatients with dementia compared with patients admitted to the acute psychogeriatric wards of Woodbridge Hospital. We also assessed the impact of neuropsychiatric symptoms on distress in family and professional caregivers. METHOD: Eighty-five consecutive patients with a first-time diagnosis of dementia were recruited. They were assessed using the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D). The professional caregiver distress questions were rephrased to assess the "occupational disruptiveness" of behaviors in the nursing home version (NPI-NH). RESULTS: Neuropsychiatric symptoms were common and were positively correlated with caregiver distress. Family caregivers were significantly more distressed than professional caregivers over the delusion, agitation, depression and aberrant motor domains, although the severity of the behavioral disturbances reported was not higher in the sample. The median NPI scores for the agitation and disinhibition domains were significantly higher in the inpatient group, contrasting with a higher score for the depression domain among the outpatient group. CONCLUSIONS: This study highlights the prevalence of neuropsychiatric symptoms in dementia and illustrates the strong correlation between the severity of behavioral disturbances and caregiver distress.  相似文献   

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