The caregiving experience: how much do health professionals understand?

Legal, social and economic factors have changed the delivery of care to people who have a mental disorder. Many of these people are now treated in the community and they live with or in close proximity to their family. The aim of this paper is to provide health professionals with an insight into the experience of being a caregiver to a person with a person with a mental disorder. For these families caregiving becomes an integral part of everyday life. Positive outcomes for both the caregiver and the ill family member are more likely to occur when effective levels of collaboration exist between health professionals and caregivers. Collaboration is enhanced when caregivers and health professionals value each other's contribution to the ill family member's care. Often the burden, stress, and socio-economic effects on the family caring for a person with mental illness is not sufficiently appreciated and further increases this burden. A review of the literature from the caregiver's perception is presented. An increased understanding of the caregiving experience will enable health professionals to develop and implement strategies that facilitate positive outcomes for the caregiver and the ill family member.     

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.     

Differences in family caregiver outcomes by their level of involvement in discharge planning.

Family caregivers play vital roles in assisting elders after they are released from the hospital. Although health care professionals advocate involving family caregivers in discharge planning for elders, little is known about the extent to which this involvement benefits or jeopardizes the caregiver's health and their perceptions of the caregiving experience. The purpose of this study was to determine whether the level of family caregiver involvement in discharge planning for an elder made a difference in caregiver health, discharge planning satisfaction, perception of care continuity, preparedness to assist the elder, and acceptance of the caregiving role 2 weeks and 2 months postdischarge. The sample consisted of 130 family caregivers for elders hospitalized with heart failure. Telephone interviews were conducted 2 weeks and 2 months postdischarge. The findings indicated that family caregivers who reported more involvement in discharge planning had significantly higher scores on satisfaction, feelings of preparedness, and perception of care continuity 2 weeks following the elder's hospitalization than those who reported little or no involvement in planning. Caregivers who reported more involvement in planning also were more accepting of the caregiving role. At 2 months postdischarge, caregivers who reported more involvement in discharge planning reported better health and more acceptance of the caregiving role than those who had little or no involvement in planning.     

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.     

Can burdened caregivers be effective facilitators of elder care‐recipient health care?

BACKGROUND: Caregiving by informal family caregivers of dependent older people in the community may be affected by burden and by the personal and social resources available to the caregiver. Given the increase in the dependent older population, study of factors affecting informal caregiving is necessary. AIMS: To examine caregiver resources, burden and competence as predictors of health-care facilitation on behalf of older patients. DESIGN: Cross-sectional data were collected by an interview schedule from 240 randomly sampled spousal and filial caregivers in Jerusalem. Study variables included caregiver background variables, general self-concept and feelings of caregiver competence, informal and formal social support, burden and levels of health-care facilitation. Path analysis was performed to clarify the direct and indirect predictors of health-care facilitation. RESULTS: Caregiver facilitation of health-care was positively related both to the presence of personal and social resources and to burden levels. The results suggest that quality caregiving can coexist with burden, provided that ample caregiver resources are present. The most important resources were caregiver sense of competence and support from the professional health-care provider. DISCUSSION: Caregiving burden is not readily reducible, given the chronic nature of older people's health problems. However, caregiver resources can be bolstered, particularly by health professionals. Nurses, who are orientated to holistic family centred care, are especially well-suited for this important intervention.     

Family caregiver assessment. Essential for effective home health care

Home health care nurses do not routinely assess the health of family caregivers despite their essential contribution to the client's care. In this study, home care nurses collected data on 51 older family caregivers from their caseloads to assess their health. The average age of the caregivers was 75.1 years (SD = 6.09). Most (66.7%) were women and were the home health client's spouse (82.4%). These individuals had been caregivers for up to 20 years, and reported spending an average of 13.3 hours per day in this role (SD = 9.15). Approximately half (n = 25) of the caregivers reported poor or fair health, with 33.3% (17) reporting a decline in their health over the previous 6 months. Unmet health needs included the need for blood pressure monitoring, mammograms, PAP smears, and prostate examinations. Referrals to other health care providers or community agencies were required by 78.4% of the caregivers, 78.4% required health teaching, and 23.5% required home health services themselves. Those requiring home health care were more likely to be on more medications and classify their health as fair or poor. These findings confirm those of a pilot study conducted on 51 other family caregivers. Nurses serving the geriatric population need to conduct systematic family caregiver assessments to identify caregiver health needs that could impair their caregiving ability. In particular, for home health care to be effective, nurses must conduct caregiver assessments.     

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.     

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.     

Caregiving for the terminally ill: at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.     

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.     

Giving voice to informal caregivers of older adults.

This study focused on the experiences of informal caregivers of older adults and explored whether employment, use of home-care services, or other factors influence the health of caregivers and their ability to manage their caregiving and other responsibilities. Focus groups conducted with 26 caregivers and personal interviews with 4 caregivers identified 12 themes under 5 conceptual areas: caregiver health, relationships, independence, employment, and use of home-care services. The findings reveal that caregiving coupled with other responsibilities can have serious health effects. Participants spoke of the tenuous balance of decision-making control between caregiver and care recipient. Many caregivers expressed a desire to be included as part of the formal health-care team. Implications for nursing are discussed.     

Preventive health practices: comparison of family caregivers 50 and older

The purpose of this study was to describe adherence to recommended preventive health practices among middle-aged and older male and female family caregivers of individuals receiving home health services. Perceptions of the burden and benefit of caregiving, wellness orientation, social participation, and community resource use by the caregiving dyad (caregiver and carereceiver) were also explored using the t test and the chi2 test to detect gender differences. A sample of 319 participants 50 and older was recruited from a home health agency in southwestern Pennsylvania to participate in a telephone survey. Results revealed that caregivers had performed 86% of age- and gender-appropriate preventive health practices, but they currently adhered to guidelines for 63% of such behaviors, regardless of gender. Men experienced less burden than women, and were more likely to acknowledge that caregiving made them feel useful and appreciated and gave more meaning to their lives. The study suggests that family caregivers may be as vigilant in their preventive health behavior as the general population, despite their responsibilities. Nurses in contact with middle-aged and older family caregivers are well positioned to encourage health promotion and disease prevention behaviors in this accessible population.     

Concept analysis: abuse of ageing caregivers by elderly care recipients

PURPOSE: The purpose of this article is to clarify the concept of abuse within the context of ageing women who are at risk for or experiencing physical or emotional injury inflicted by elderly family members for whom they provide care. BACKGROUND: The study of abuse of ageing individuals in family caregiving situations has traditionally focused on abuse of the dependent care receiver. However, evidence supports the health risks related to abuse of ageing caregivers as well. Women, usually spouses, daughters, or daughters-in-law, most frequently assume the caregiver role. METHODS: A modification of the strategies for concept analysis proposed by Walker and Avant (1995) is used to clarify the concept of caregiver abuse. Searches of the professional literature reveal that caregiver abuse is rarely addressed; therefore, the broader concept of elder abuse is reviewed and then placed within the general context of family caregiving. Audiotapes of the first session of a community based intervention research study entitled Intervention for the Abuse of Ageing Caregivers (Phillips et al., NIH Grant No. R01 DA-AG11155-01, 1996), in which ageing women caregivers described abusive caregiving situations, were analysed qualitatively using the principles of concept analysis. The audiotapes serve as a second source of data for the concept analysis process. FINDINGS: Antecedents, defining characteristics, and consequences of abuse of ageing caregivers were identified through the process of concept analysis. Model, contrary, and borderline cases are presented to illustrate the findings. CONCLUSIONS: Findings supported the need for awareness that ageing caregivers can be placed at risk by verbally and physically abusive behaviours of the elders for whom they provide care. Use of the term 'abuse' by health care professionals has potentially negative consequences for identification and intervention in cases of potential or actual caregiver abuse.     

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended.     

Life of a caregiver simulation: teaching students about frail older adults and their family caregivers

The number of older adults with caregiving needs is rapidly escalating, and the majority of these adults are cared for at home by unpaid family members. Nurse educators must better prepare nurse graduates to meet the needs of this population, as well as to include family caregivers as part of the health care team. This article describes the design, implementation, and preliminary outcomes of a unique learning experience, the Life of a Caregiver Simulation, which uses narrative pedagogy to increase students' awareness and understanding of the needs of older adults, their family caregivers, and the community services they use. Subjective data from students (N = 25) indicated the simulation served as an effective catalyst for students to experience first-hand and understand the stress and burdens of caregiving.     

Caregiving demands,job demands,and health outcomes for employed family caregivers of older adults with dementia: Structural equation modeling

Many family caregivers are also employed full- or part-time and are known to be affected by job demands. This study explored the mediating effect of job demands on the relationship between caregiving demands and caregiver health outcomes in primary family caregivers of older persons with dementia in Taiwan (N?=?214). A cross-sectional design using a self-completed structured questionnaire was implemented. Structural equation modeling analyses showed that job demands partially mediated the relationship between caregiving demands and caregiver health outcomes. The indirect effect of caregiving demands on caregiver health outcomes through job demands was 0.208 (95% confidence interval: 0.053 - 0.335). Nurses should evaluate job demands when screening for high-risk caregiver groups vulnerable to high caregiving demand. Interventions aimed at lessening both caregiving demands and job demands may improve caregiver health outcomes for family caregivers of older adults with dementia.     

Caregiving experiences of families of persons with serious mental health problems in the Niger Delta region of Nigeria

Mental health services are provided at Rumuigbo Hospital, a single facility that renders psychiatric services in Rivers State and surrounding states in the Niger Delta region of Nigeria. Psychiatric services are not provided at primary health‐care clinic or district hospitals, and access to this service can be problematic for many caregivers due to the time and costs involved. Therefore, this study explored the family caregiving experiences of persons with serious mental health problems in terms of the mental health‐care policy and health systems environment. A qualitative study using a purposive sampling technique was conducted among 20 caregivers attending a neuropsychiatric clinic in Port Harcourt, Rivers State, Nigeria. The results show that 78% of caregivers lived outside Port Harcourt and 65% had no regular monthly income. Stigma, poor knowledge in managing symptoms of ill relatives, financial implications, lack of support network, and absence of community outreach clinics were found to affect family caregiving experiences. Policies need to be developed and implemented that provide mental health care through primary health‐care services to ameliorate families' financial burden, enable early diagnosis and treatment, reduce the need to travel, and improve the quality of life of family caregivers.     

Caring for the terminally ill: experiences of Latvian family caregivers

AIM: To increase understanding of the experiences and needs of family caregivers of terminally ill persons in Latvia. BACKGROUND: Latvia has high death rates from cardiovascular disease and cancer, and families care for the terminally ill with little preparation and support. Health professionals also have little preparation in supporting these patients and families at the end of life. METHODS: A qualitative study was carried out in the summer of 2004 in Latvia. Data collection was by semi-structured interviews with caregivers (n=18) whose care recipients died at least 1 year previously. FINDINGS: The caregiver narratives addressed experiences that paralleled the trajectory of the patient's illness: the disruption of normal life patterns; taking on the caregiver role; establishing new patterns and learning role competencies; engaging in preparation for dying; and the gains and losses of the caregiving experience as seen in retrospect. CONCLUSIONS: The caregiver narratives suggested a need for more education in practical caregiving; access to patient care equipment and supplies; and a need for ongoing support and guidance by knowledgeable medical personnel during caregiving.