Support interventions for caregivers of physically disabled adults: A systematic review

In developing countries family caregivers are an important community‐based resource who provide care for physically disabled adults. Substantial caregiving commitment is known to adversely affect caregiver health and thereby their capacity to provide ongoing care. This systematic review focused on support interventions for caregivers using Thailand as an example. From 1964 to 2011 international and Thai electronic databases and relevant grey literature were searched. Six English papers and 34 Thai papers published between 1990 and 2010 were found. The Critical Appraisal Skills Programme (CASP) tool was modified to appraise methodological quality. All nurse‐led interventions mainly focused on improving caregiving capacity; nearly half considered caregiver health. Only 15 interventions were community‐based. Despite variable research quality all studies showed benefits for caregivers, care recipients, and healthcare services. In developing countries without healthy caregivers physically disabled adults would not receive care. There is an urgent need for further investment in community‐based research to develop effective interventions designed to promote caregiver health and help them maintain their role.     

Improving well-being in caregivers of terminally ill patients. Making the case for patient suffering as a focus for intervention research

Family caregivers are integral to the care of patients with physical or mental impairments. Unfortunately, providing this care is often detrimental to the caregivers' health. As a result, in the last decade, there has been a proliferation of interventions designed to improve caregivers' well-being. Interventions for caregivers of persons at end of life, however, are relatively few in number and are often underdeveloped. They also are typically designed to help reduce the work of caregiving or to help caregivers cope with the physical and emotional demands of providing care. Although useful, these interventions generally ignore a primary stressor for family caregivers -- a loved one's suffering. Patient suffering, whether physical, psychosocial, or spiritual, has a major impact on family caregivers. However, interventions that focus on the relief of patient suffering as a way to improve caregiver well-being have rarely been tested. It is our view that more research in this area could lead to new and more effective interventions for family caregivers of seriously or terminally ill patients. In support of our view, we will define suffering and review the relationships between patient suffering and caregiver well-being. We will then discuss a conceptual framework for intervention design. Finally, we conclude with a discussion of implications and future directions for intervention research.     

社区生活自理障碍老年人照顾者负担及其影响因素的调查

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

Caregiver 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.     

Family caregivers of patients with frontotemporal dementia: An integrative review

ObjectivesThe purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers’ health and well-being, and (3) identify coping strategies used by family caregivers.BackgroundFrontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia.Design and data sourcesAn integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles.ResultsFindings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful.ConclusionsFamily caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden.     

Nursing care plan for the informal caregiver. A case report

We define the caregiver as the person responsible for attending the daily needs of another person who is unable to care for him/herself due to illness or disability. Caregivers are responsible for the physical, emotional and often financial support of these individuals. Family caregivers are described as "informal" by health professionals to refer to those who care for members of their own family without payment. We describe the case of a mother (informal caregiver) with a 24-year-old son who was totally dependent. An individual nursing care plan was developed, in which risk for caregiver role strain related to the severity and chronicity of the care receiver's condition, among other diagnoses, was detected. This plan includes desired outcomes and nursing interventions. Primary care nurses should pay special attention to the care of these informal caregivers.     

Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis.

Because of conflicting results, in order to clarify the state of the science it was necessary to do a systematic analysis of the literature on research testing the effect of interventions on the burden of persons caring for family members with dementia. The purpose of this study was to evaluate, using meta-analytic techniques, those intervention strategies (support group, education, psychoeducation, counseling, respite care, and multicomponent) designed to help caregivers cope with the burden of caregiving. Using meta-analytic methods developed by Glass, McGraw, and Smith (1981) and Hedges and Olkin (1985), 24 published research reports testing 27 treatments for caregivers of adults with dementia were synthesized. Overall, the analysis showed that collectively the interventions had no effect on caregiver burden. Only the category of multicomponent interventions significantly reduced caregiver burden. Burden may be too global an outcome to be affected consistently by intervention. Better and more precise measures are needed to evaluate the effects of caregiver interventions properly.     

Home caregivers of the person with advanced cancer: an Australian perspective

Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well-being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiver-focused nursing interventions.     

Informal caregivers in home palliative care

Abstract

In order to deliver palliative care in line with the WHO definition, we must identify and support caregivers. This paper addresses some fundamental questions in defining, identifying and delivering interventions to caregivers. These considerations are key to organisation of appropriate health services, design and conduct of research, and specification and improvement of outcomes. Firstly we consider how we identify caregivers, and how we conceptualise a caregiver from the perspective of health service providers and researchers. We consider caregiver roles across cultures and settings. We then describe the challenges to selecting appropriate outcomes and what our expectations should be for intervention studies in terms of effectiveness, and the tools we use to assess and measure caregiver needs. We conclude with recommendations for future outcomes research.     

失能老年人照顾者护理负担的研究

本文介绍了失能老年人家庭照顾者护理负担的概念和研究工具,从照顾者、被照顾者、家庭和社会等主体角度出发,分析了失能老年人家庭照顾者护理负担的影响因素和干预措施,并指出解决失能老年人长期照护问题应依靠家庭、社区、社会组织等力量,有效减轻照顾者护理负担。     

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.     

Alzheimer's disease caregiving information and skills. Part II: family caregiver issues and concerns

In recent years researchers have carried out an increasing number of clinical trials with family caregivers of the elderly. The results of these interventions have suggested that caregiver skill-building interventions may be more effective than information/support interventions. Although researchers have given considerable attention to the information and support needed by family caregivers, less is known about how this information and support translates into caregiver skills or into changes in behavior. This is the second in a series of three articles on a study in which researchers used qualitative methods to analyze summaries from the group component of a larger caregiver clinical trial. In this article we describe caregiver issues and concerns in five major areas: (a). dealing with change, (b). managing competing responsibilities and stressors, (c). providing a broad spectrum of care, (d). finding and using resources, and (e). experiencing emotional and physical responses to care. We identify specific skills needed by caregivers in addressing these caregiving issues and concerns, and we compare and contrast skilled with less skilled caregivers. Further work is needed concerning the focus and methods of future caregiver skill-based interventions.     

Family caregiving of persons living with HIV/AIDS in Thailand: caregiver burden, an outcome measure

The present paper provides an initial picture of HIV/AIDS-affected families. It is evident that families play a major role of support for HIV/AIDS patients in Thai society. Caregiver burden is one of the patient-related outcomes, which is the most common outcome measure in caregiver research. The demands on the family caregivers of these patients are enormous and need to be addressed. The determinants that are associated with caregiver burden such as caregiver characteristics, patient characteristics and social stigma are important for nurses to minimize the burden of care so that appropriate interventions can be developed for persons with HIV/AIDS and family members who share the work of managing their care at home.     

Family caregiver burden by relationship to care recipient with dementia in Korea

The purpose of this study is to compare demographic and clinical characteristics of caregivers and care recipients by caregiver type (i.e., daughter, son, daughter-in-law, and spouse) and to compare the caregiver burden among each type of caregiver. A cross-sectional survey design was used involving 157 primary family caregivers and their care recipients who were diagnosed with dementia. Participants were from the Korean capital and the surrounding suburbs. Spouse caregivers rated themselves as having poorer health and less social support than adult child caregivers did. Those cared for by daughters-in-law were older and demonstrated more memory and behavioral problems than those by spouses, sons, or daughters. Spouses perceived the highest burden among caregivers. Nursing interventions could be developed on the basis of the specific type of burden that various caregivers experience. For future studies, exploring the earlier marital relationship between spouse caregiver and care recipient would be useful for understanding the burden of spouse caregivers.     

Caregivers of persons with a brain tumor: a conceptual model

Researchers have documented negative physical and emotional consequences for both family caregivers of persons with cancer as well as caregivers of persons with a neurologic disorder. However, there is a unique subset of caregivers who must provide care for someone who may suffer from both a short, terminal trajectory of disease, as well as neurological and neuropsychiatric sequelae - the caregiver of a person with a primary malignant brain tumor. The purpose of this article was to describe a conceptual framework for providing care for a person with a primary malignant brain tumor. The demands of this particular care situation are described, as well as potential resources available to the caregiver to meet those demands. Finally, the stress response that results from the balance between care demands and caregiver resources is illustrated. Development of a conceptual framework for this caregiving population is the first step in assisting nurses to identify factors that place caregivers of persons with a primary malignant brain tumor at risk for negative consequences, and to design interventions to improve caregiver health.     

Stress on caregivers of the elderly

This article considers the health threats to a vulnerable population, caregivers of the frail elderly who are maintained in the community. A model of competing care demands is derived from Orem's self-care theory and from caregiver literature to propose that the caregiver, when faced with dwindling resources of energy, time, and money, is forced to choose between self-care and dependent care of the elder. Often, the individual neglects his or her own health to continue to give care. The suggested research projects presented here assess those nursing interventions that complement and support caregiving.