Easing the impact of the family caregiver's role

This article describes problems facing family caregivers of elderly, ill, or disabled people. The physical and emotional impact of caregiving is explored, and the concept of role fatigue is discussed to assist nurses in understanding caregivers' problems and needs. Motivational factors for becoming a caregiver and community sources of support are addressed. Rehabilitation nurses are challenged both to accept the responsibility of identifying caregiver role problems, and to help caregivers obtain assistance that will enable them to continue family members' care in a home environment.     

Everyday occupation, well-being, and identity: the experience of caregivers in families with dementia.

The purpose of this study was to gain understanding of the nature of the daily occupations of caregivers for family members with dementia as related to the caregivers' perceptions of well-being. Qualitative telephone interviews, focused on the experience of caregiving, were conducted with 33 caregiver-respondents; the data were transcribed and analyzed using a phenomenological approach. Everyday occupation emerged as a phenomenon that was central to the caregivers' ways of evaluating and monitoring well-being in the care receivers and themselves. Further, occupational engagement served to help mitigate the potential biographical disruption of the dementia caregiving experience. The implications for occupational therapy personnel are convincing: Everyday occupation holds promise for contributing to the relative well-being of both caregivers and care receivers and for facilitating continuity of relationships and identity for the caregiver.     

Spirituality and psychological well-being: testing a theory of family interdependence among family caregivers and their elders

The family spirituality-psychological well-being model was developed and tested to explore how spirituality influences psychological well-being among elders and caregivers in the context of Korean family caregiving. The sample consisted of 157 Korean elder-family caregiver dyads in Seoul, Korea. The intraclass correlation coefficient and the actor-partner interdependence statistical model were used to analyze the data. There were significant correlations between elders' and caregivers' spirituality and between elders' and caregivers' psychological well-being. Elders' and caregivers' spirituality significantly influenced their own psychological well-being. The caregiver's spirituality significantly influenced the elder's psychological well-being, but the elder's spirituality did not significantly influence the caregiver's psychological well-being. Findings suggest that elders' and caregivers' spirituality should be assessed within the family to provide holistic nursing interventions.     

Care for carers of stroke patients: evidence-based clinical practice guidelines.

Caregivers of stroke patients provide informal care ranging from physical help to psychosocial support. As a result, these caregivers may experience high levels of burden, associated with characteristics of the patients and of the caregivers themselves. This burden can result in a deterioration of the caregivers' health status, social life and well-being. The caregivers may thus be seen as colleagues of professional caregivers in sharing the care for the patient, but they should also be seen as "patients" having problems and special needs themselves. In this paper new Dutch clinical practice guidelines are presented. These guidelines are formulated in response to an expressed need to improve professional support for this group. We believe these guidelines are also relevant for other countries, since the evidence was gathered through systematic searches of international literature and none of the guidelines that we were able to find in other countries already included this evidence. New, or more detailed topics in the Dutch guidelines, in comparison with existing international guidelines, are added (e.g. young children). Three topics concerning caregiver burden are presented in more detail in this paper, which are based on systematic literature searches: partners at risk of burden, assessing burden in caregivers and interventions for caregivers.     

Problems experienced by the informal caregivers of cancer patients and their needs for support

Informal caregivers experience problems of their own for which they need support, but despite the efforts of the World Health Organization to include the well-being of family members and caregivers in the concept of palliative care, their needs are rarely assessed systematically. This report explores caregivers' problems and their needs for professional support. Seventy-six caregivers of cancer patients with advanced disease completed a comprehensive needs assessment questionnaire, the Problems and Needs in Palliative Care questionnaire-caregiver form, listing 67 potential problems in their quality of life and their role of caregiver and 9 items concerning informational needs. The results of this study reveal that the "Top 20" list of the problems and needs reported by caregivers includes fears and emotional burdens; for the most part, caregivers did not need any more professional attention than they were already receiving. Many, however, needed support for managing patients' symptoms and wanted professional attention for the availability and coordination of services. Despite communalities, there was diversity in caregivers' individual needs. Personal needs could be identified with the Problems and Needs in Palliative Care questionnaire-caregiver form checklist. Although only a few caregivers were affected by some issues, such as financial problems, help for them was often needed. In conclusion, most caregivers would like more professional attention for 4 or 5 specific issues, often related to their competence as caregivers for their patients. Using structured needs assessments with the Problems and Needs in Palliative Care questionnaire-caregiver form seems a feasible method to identify the needs of individual caregivers in palliative care.     

The emotional needs of care recipients and the psychological well-being of informal caregivers: implications for home care clinicians

In this exploratory study, 77 informal caregivers of older persons in Ohio completed telephone interviews that included questions regarding their perceived difficulty providing emotional and physical care, perceived quality of care, demographic items including caregivers' health status, and a measure of their psychological well-being. Findings suggest that psychological well-being of informal caregivers is diminished when they experience greater difficulty meeting the care recipients' emotional care needs, are in poorer health, or are older. Suggestions for clinical implications and future research based on these findings are discussed.     

The meaning of daily activity in family caregiving for the elderly

Sixty ethnographic interviews with 15 family caregivers for frail older people living in the community were analyzed to understand the meaning of activity in caregiving. Sch?n's (1983) reflection-in-action framework was used to organize the data. Three goals of caregiving activity were derived: (a) getting things done, (b) achieving a sense of health and well-being for the care receiver, and (c) achieving a sense of health and well-being for the caregiver. The family caregiver was conceptualized as a lay practitioner involved in the clinical reasoning and ethical dilemmas integral to the provision of health care for the care receiver. The caregivers' judgments regarding the prioritization and attainment of goals determined the forms of caregiving activities. Implications for occupational therapy practice and the relationship between the caregiver and the professional are discussed.     

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.     

Caregiver respite: coming back after being away

Respite services are seen as one key formal support intervention mitigating the negative consequences of family caregiving. The purpose of this paper is to examine how the caregivers' respite experience influenced their return to the responsibilities of caring for their family members. The discussion is based on a qualitative interpretative study with 20 caregivers exploring the meaning of respite to family caregivers of persons with dementia. Although the beneficial effect of the emotional and physical refreshment and renewal was evident throughout, there were notable variations in how caregivers experienced their return to caregiver responsibilities. Some experienced short-term despondency and feelings of 'let-down' while others felt guilty and emotionally devastated when they returned. Three factors emerged which related to the differential caregiver experiences: the amount of time and quality of the respite interval; the nature and quality of the respite help that was used for the dependent family member; and the condition of their dementia family member when the caregiver resumed the caregiver role. Clinicians must recognize that these factors strongly influence how the responsibilities of caregiving are resumed. Researchers must explore for additional factors which detract from the anticipated positive effects of the caregiver respite experience. Clarification of these factors can provide guidance to service providers to develop respite services that are more attuned to the caregivers' perceptions of benefit for themselves and for their dependent family members.     

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.     

A nursing intervention to decrease depression in family caregivers of persons with dementia

The goal of this study was to evaluate a community-based psychoeducational-nursing intervention designed to teach home caregivers to manage behavioral problems of persons with Alzheimer's disease and related dementias (ADRD) using the Progressively Lowered Stress Threshold (PLST) model, and to compare this intervention with routine information and referrals for case management, community-based services, and support groups. Previous caregiver studies have overwhelmingly pointed to the adverse effects of caregiving on the caregivers' physical and mental health, and high prevalence rates of depression among caregivers of persons with ADRD have consistently been reported. Therefore, a primary aim was to evaluate the impact of the intervention on caregivers' affective responses, especially depression. Data from both the Profile of Moods States and the Geriatric Depression Rating Scale support the effectiveness of this intervention in decreasing depression among caregivers who received the experimental training. Additional analysis of factors associated with caregiver depression are also reported. The pivotal role of psychiatric nurses in the assessment and treatment of depression among caregivers of persons with ADRD is discussed.     

Vigilance. Evolution and definition for caregivers of family members with Alzheimer''s disease

The language of caregiving relies heavily on terms that are frequently negative such as caregiver stress and burden, but these are not universally accepted phenomenon. The purpose of this article is to report on the development of caregiver vigilance and to suggest it offers both neutral terminology and a means to include caregivers' perceptions of their supervisory role. The concept of vigilance emerged from a qualitative study of caregivers of family members with Alzheimer's disease. Vigilance is defined as the caregivers' continual oversight of their care recipients' activities. The five key components of vigilance were watchful supervision, protective intervening, anticipating, always on duty, and being there. Vigilant caregivers saw themselves as "on duty" even when they were not "doing things." The findings of this study support caregivers' perceptions of 24-hour-a-day responsibility. Nurses need to realize that caregiver vigilance is not necessarily diminished when professional caregivers intervene or institutionalization occurs. Debriefing caregivers about their unique family caregiving knowledge and incorporating it into caregiving is a key strategy for nurses to use to build caregiver trust and reduce their vigilance time.     

Predictors of depression and life satisfaction among spousal caregivers in hospice: application of a stress process model

Using a stress process model, risk factors (caregiving stressors, caregiver health, and negative social interactions) and protective factors (caregiving appraisals and social resources) were examined as predictors of family caregiver well-being (depression and life satisfaction). Eighty spousal caregivers of hospice patients with dementia or lung cancer completed structured interviews and self-report measures assessing components of the stress process model. Results suggest that objective measures of patient impairment or amount of care provided are not strong predictors of caregiver depression or life satisfaction. Female gender, caregiver health problems, and negative social interactions were risk factors for poorer caregiver well-being. Caregivers who subjectively appraised caregiving tasks as less stressful, who found meaning and subjective benefits from caregiving, and with more social resources had lower depression and higher life satisfaction, even after controlling for patient impairment and caregiver appraisal variables. Regression models accounted for 42% of variance in caregiver depression and 52% of variance in caregiver life satisfaction. Counseling for hospice family caregivers could utilize the stress process framework, and pay particular attention to finding meaning or subjective benefits from caregiving, and remaining active in social roles. Further research providing evidence on caregiver risk and protective factors could improve the conceptual and empirical basis for psychosocial interventions for hospice family caregivers.     

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.     

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.     

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.     

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.