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.     

Rethinking Intervention Strategies in Stroke Family Caregiving

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke‐recovery trajectory.     

Caregiver care

In 2009, nearly 66 million Americans (three in 10 U.S. households) reported at least one person providing unpaid care as a family caregiver. More adults with chronic conditions and disabilities are living at home than ever before, and family caregivers have an even higher level of responsibility. Caring for loved ones is associated with several benefits, including personal fulfillment. However, caregiving is also associated with physical, psychological, and financial burdens. Primary care physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of caregiver or care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life. Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life.     

Caregivers of chronically ill elderly: perceived burden

Family members play a major role in providing caregiving assistance to elderly persons and their families. The effect of stressors on family members caring for a physically or mentally ill person has been referred to as caregiver burden. It is an important concern and will become more so with the inevitable aging of the population. Community health and home health nurses must be able to recognize those factors associated with caregiver burden to effectively render care to their clients and families. This study examined caregiver characteristics and the degree to which these variables affect caregiver burden. Although much research focuses on caregivers of Alzheimers clients, this research utilized a wider variety of client diagnoses to examine caregiver burden of those clients. A sample representing 88 caregivers of elderly chronically ill persons was obtained from various sources in the community. Demographic data about the caregiver was collected. The amount of burden they experienced was recorded using the Burden Interview (Zarit et al., 1986). This study found that there was a positive correlation between increased activities of care performed by the caregiver and caregiver burden. This included both the provision of direct care such as bathing and indirect care such as running errands, preparing meals, and performing housework. It was found that sons, as caregivers, reported significantly less burden than did daughters or other relatives. Community health and home health nurses working with families in a caregiving situation have an opportunity to reduce caregiver burden. This is done by assessment of the caregiving environment and implementation of plans for early intervention.     

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.     

脑卒中患者居家主要照顾者负荷水平与影响因素的调查

目的　探讨脑卒中患者居家主要照顾者的负荷水平及其影响因素。方法　选取脑卒中患者居家主要照顾者79例,用自编脑卒中患者居家主要照顾者负荷量表和社会支持量表进行评定。结果　脑卒中患者居家主要照顾者负荷的得分指标为5 7.88%,处于中等水平,身体负荷最重,其次为经济负荷。对负荷影响最大的因素为照顾对象需人照顾项目总分为(β=为0 .4 5 5 ) ,其次为社会支持度(β=为0 .4 0 5 ) ,均有显著性意义(P<0 .0 0 1 )。共它影响因素包括照顾对象是否有慢性疾病(P<0 .0 5 )、照顾对象医疗费用支付形式(P<0 .0 1 )、照顾对象家中常见症状(P<0 .0 0 1 )、照顾者每天用于照顾患者时间(P<0 .0 0 1 )和照顾者是否有宗教信仰(P<0 .0 5 )。结论　脑卒中患者居家主要照顾者承受着较重的身体负荷和经济负荷。在社会支持方面信息性支持是最为不足的。因此,要为照顾者提供可及、可承受的社区服务,建立多种渠道加强信息性支持,以提高社会支持度,同时给予主要照顾者更多的情感和精神支持,这样才能全面降低脑卒中患者居家主要照顾者的负荷水平,促进其身心两方面的健康,以提高脑卒中患者的照顾质量。     

Caregiver burden among dementia patient caregivers: a review of the literature

Purpose: To identify current evidence of factors influencing dementia-related caregiver burden (CB), describe patient and caregiver characteristics associated with CB, and describe evidence-based interventions designed to lessen the burden of caregiving.
Data sources: Comprehensive literature review of Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Psych Info was performed for the years 1996–2006 of peer-reviewed journals using keywords CB and dementia.
Conclusion: Dementia caregiving has been associated with negative effects on caregiver health and early nursing home placement for dementia patients. Many factors influence the impact of the caregiving experience such as gender, relationship to the patient, culture, and personal characteristics. Although various interventions have been developed with the goal of alleviating CB, evidence suggests that individually developed multicomponent interventions including a diversity of services will decrease burden, improve quality of life, and enable caregivers to provide at-home care for longer periods prior to institutionalization.
Implications for practice: The ability to properly assess the dementia patient–caregiver dyad related to CB is critical to decreasing its negative physical and psychological health outcomes. Appropriately tailored interventions can improve the health and well-being of both caregiver and patient.     

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     

Effectiveness of a strength-oriented psychoeducation on caregiving competence,problem-solving abilities,psychosocial outcomes and physical health among family caregiver of stroke survivors: A randomised controlled trial

BackgroundFamily caregivers provide the foundation for long-term home care of stroke survivors. The overwhelming stress associated with caregiving hinders the ability of family caregivers to utilise their internal and external resources to cope with this situation, thereby placing their own health at risk. We conducted a randomised controlled trial of a strength-oriented psychoeducational programme on conventional stroke rehabilitation for family caregivers.ObjectivesTo evaluate the effectiveness of a strength-oriented psychoeducational programme on the caregiving competence, problem-solving coping abilities, caregiver’s depressive symptoms, caregiving burden and resources (family functioning, social support) and physical health (such as caregiving-related injury), as well as potential placement of stroke survivors.DesignA prospective multi-centre and single-blinded randomised controlled trial stratified by survivors’ history of stroke.Setting and participantsAdult stroke patients and their family caregivers were recruited from the medical wards of a regional acute and two rehabilitation hospitals in the Eastern New Territories of Hong Kong.MethodsThe design of the trial was based on the relational/problem-solving model. Family caregivers of stroke survivors who had been admitted to the study hospitals completed a set of questionnaires before randomisation, immediately, one- and three-months post-intervention. The control group received usual care, whereas the intervention group received an additional 26-week strength-oriented psychoeducational programme (two structured individual face-to-face pre-discharge education sessions on stroke and its associated caregiving skills and six biweekly post-discharge telephone-based problem-solving coping skills training sessions). Data were analysed using the generalized estimating equation and multiple regression models and chi-square tests.ResultsWe recruited 128 caregiver–survivor dyads. The intervention group demonstrated significantly greater improvements throughout the study (p < 0.01) in terms of caregiving competence, problem-solving coping abilities and social support satisfaction. This group also displayed significantly greater improvements in terms of family functioning (p < 0.05) at one-month post-intervention, an increased number of social support (p < 0.001) and a lower level of burden at three-month post-intervention. However, there was no significant effect on enabling stroke survivors to remain in their home. Post-hoc analysis showed a significant and indirect effect of problem-solving coping abilities, which suggested its mediating effect on caregiving competence of stroke caregivers.ConclusionsFindings suggest that incorporating a strength-oriented psychoeducational programme into the existing stroke rehabilitation protocol can foster a healthy transition to caregiving among family members of stroke survivors.     

How much should we expect? Family caregiving of AIDS patients in rural Uganda.

The aim of this study was to measure the burden of care for family caregivers of AIDS patients. A cross-sectional exploratory design was used to describe the care experiences of family caregivers of AIDS care recipients. A questionnaire was used to interview 120 family caregivers of AIDS patients from four rural areas in western Uganda. The questions asked were related to 12 domains of family caregiving. Care burden scores of caregivers were calculated. It was found that care burden scores were high in all domains except those regarding relationships within the families and substance abuse. Serious work overload and low health status were reported. The high burden of caregiving puts family caregivers at risk for decreased health status and increased social isolation and depression.     

积极感受在脑卒中主要照顾者相依关系与照顾负担的中介效果

目的 探讨积极感受在脑卒中主要照顾者照顾负担与相依关系的中介作用,为提高主要照顾者身心健康提供理论参考。方法 采取便利抽样法抽取神经内科病区194例住院脑卒中主要照顾者为研究对象,采用一般资料调查表、积极感受量表、相依关系量表和照顾负担量表对主要照顾者进行调查。结果 主要照顾者照顾负担得分为(36.96±14.56)分、积极感受得分为(31.06±8.73)分、相依关系得分为(32.95±14.47)分。积极感受与相依关系呈正相关(r=0.50,P＜ 0.01),与照顾负担得分呈负相关(r=-0.20,P＜0.01),相依关系与照顾负担呈负相关(r=-0.59,P＜0.01)。Bootstrap法进一步验证了积极感受的中介效应。结论 积极感受是脑卒中照顾者照顾负担与相依关系间的部分中介变量。医护人员对照顾者应多加关注,了解其在照顾过程中的积极感受及与患者的相依关系水平,及时给予干预,进一步缓解其感知的照顾负担,提高照顾者的生活质量,促进脑卒中患者主要照顾者的身心健康。     

Impact of caregiving on Finnish family caregivers

Scand J Caring Sci; 2012; 26; 211–218 Impact of caregiving on Finnish family caregivers Background: Numerous studies have examined the caregiver burden that family caregivers often experience. However, caregiving situations may also include positive elements that have recently received greater research attention. Aim: The aim was to examine the positive value and negative impact of caregiving for the family caregiver. Method: Caregiving experience was measured with the modified 15‐item Carers of Older People in Europe Index. Surveys were completed by family caregivers at the baseline and after 6 months. Results: At the baseline, most family caregivers thought that caregiving was worthwhile, had a good relationship with the person they cared for and coped well as a caregiver. Fifty‐five per cent of the respondents did not feel trapped in their caregiver role, though a third did, and a majority found caregiving to be too demanding. Most perceived themselves to be supported by their family, while 40% did not feel supported by health and social services. During the 6‐month study period, the negative impact score declined, and the scores for positive value and quality of support improved. The care recipient’s management at home (p < 0.001) was the single best predictor of the negative impact on the family caregiver; the family caregiver’s older age (p < 0.01) best predicted the quality of support; and the family caregiver’s good relationship with the care recipient (p < 0.01) best predicted the positive value of caregiving. Conclusions: The study indicated that even if the health status of the care recipient dramatically worsened, the family caregiver’s experiences of caregiving became more positive. This is because family caregiving was perceived to be worthwhile, most family caregivers had a close relationship with the person they cared for and they received support from their family. Interventions that focus on family caregivers’ positive experiences of caregiving would be important in protecting them from the negative consequences of caregiving.     

Do Caregiver Experiences Shape End-of-Life Care Perceptions? Burden,Benefits, and Care Quality Assessment

ContextResearchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority.ObjectivesThis study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions.MethodsThis study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011–2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics.ResultsNo or minimal caregiving burden is associated with ≥0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with ≥0.80 probability of giving such reports, even when perceiving high burden.ConclusionCaregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.     

A Stress‐Busting Program for Family Caregivers

Aging baby boomers, longer life spans, and rising levels of Alzheimer's disease and related dementias (ADRD) will result in a caregiver crisis in the near future. The ways in which caregivers deal with stresses related to caregiving will be critical to both their own well‐being and their ability to care for others. The purpose of this article is to describe the Stress‐Busting Program (SBP) for family caregivers and its effectiveness. The essential components of the SBP are education, stress management, problem solving, and support delivered in a group setting for 9 weeks. Results of the SBP indicate that throughout the program, caregivers experienced significant improvements in general health, vitality, social function, and mental health scores and decreases in anxiety, anger/hostility, depression, perceived stress, and caregiver burden. The SBP is a cost‐effective health‐promotion strategy for caregivers who have substantial ongoing stress.     

Family carers of ICU survivors: a survey of the burden they experience

Intensive care unit (ICU) survivors may experience deterioration in their quality of life for months following their return home, with families assuming a caregiving role. The aim of this study was to measure the burden associated with caring for a family member who had been critically ill. The study also sought to describe the relationship between three factors (filial obligation, social support, self-efficacy) and caregiver burden. Seventy-one family carers, 51 females (72%) and 20 (28%) males of long-term intensive care patients completed a mailed survey, after signing an informed consent form. Although the vast majority of the caregivers were providing substantial number of hours of care each week, they scored lower than the midpoint on all caregiver burden inventory subscales. Filial obligation was found to be positively associated with caregiver burden; however, there was no association between social support, self-efficacy and caregiver burden. Male caregivers experienced significantly more burden than female caregivers. The findings suggest that an understanding of the factors that impact on caregiver burden of families of ICU survivors is only beginning to emerge.     

Transformative aspects of caregiving at life's end

We do not know to what extent the needs of caregivers involved with patients at the end of life are being met by care providers and whether caregiving at life's end can be a positive experience. We used the Hospice Experience Model of Care as a framework for understanding the effect of transformative tasks on caregiving at life's end. We compared current and bereaved caregivers and then, holding background characteristics constant, tested the independent effects of three transformative mediators: self-acceptance, meaning, and closure, as well as comfort with caregiving on several stressors when explaining differences in caregiver burden and gain. Transformative aspects of caregiving do not mediate the stressors associated with burden but do mediate one stressor associated with caregiver gain. Two mediators reduce caregiver burden and all four of the mediators improve caregiver gain. Caregivers who are able to attend to these transformative aspects find more gain in the caregiving experience.     

The relationship between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia

Aim. The aim of this study is to examine associations between caregiver burden, perceived health and sense of coherence in family caregivers to persons with dementia living at home. Background. Most of the studies on family caregivers have focused on burden and morbidity. However, the caregiver's sense of coherence and perceived health have not been studied earlier in relation to caregiver burden. Design. A cross‐sectional investigation design was used. Methods. Older persons, 2238 subjects, with any form of social services, were invited to an assessment of cognitive capacity. Those who had cognitive decline (255) were invited for a medical examination and 130 persons were diagnosed as having dementia. The family caregivers to persons with dementia answered a questionnaire including a caregiver burden scale, the Nottingham health profile scale, sense of coherence scale and the Euroqol instrument. Results. The family caregivers experienced moderate burden, and strong associations were noted between burden, especially isolation, disappointment and emotional involvement with perceived health and sense of coherence, adjusted for age and relationship. Caregivers with lower burden reported significantly better perceived health and higher mean score of sense of coherence than caregivers with higher burden. Conclusions. Assessment of status of family caregivers of persons with dementia living at home seems to be gaining considerable importance. The caregiver burden scale and the sense of coherence scale seem to be highly useful for identifying carers at risk of stress, pattern of burden and coping strategies. Relevance to clinical practice. Nurses can help family caregivers to identify their negative experiences about caregiving and can help them reflect upon their coping strategies to find balance in their situation. Risk groups of caregivers may be identified, especially those with low perceived health and sense of coherence, for early interventions to reduce burden.