Negotiations about helpfulness--the relationship between formal and informal care in home care arrangements

Scand J Caring Sci; 2011; 25; 706–715 Negotiations about helpfulness – the relationship between formal and informal care in home care arrangements Background: Informal caregiving by family members is the most common way of caring for sick people at home. However, the number of care arrangements, in which both formal (nurses) and informal (family members) caregivers are involved, is considerable and increasing. Despite implicit assumptions in research that the involvement of nurses in home care arrangements is inherently beneficial, there is evidence that their involvement may have a destabilising effect. Aims: The purpose of this study was to investigate the relationship between nurses and family caregivers and its impact on the actual care that is provided. Method: Eighty‐eight interviews with family caregivers (n = 57) and nurses (n = 31) were conducted in Germany and analysed according to the Grounded Theory methodology. Findings: The relationship between formal and informal care is an encounter of two quite different perspectives that is focused on a negotiation process about caregiving work and the helpfulness of the actions taken and the interventions used. For family caregivers, it is determined by the goal of facilitating work and care for their sick family member. The nurses’ work is characterised by a process of shaping different realities in different homes. The results reveal the processes that lead to the involvement of nurses into home care arrangements and offer a deeper understanding of the negotiation processes between formal and informal caregivers. Conclusions: To provide sufficient support in home care, nurses need the ability to engage in negotiation processes that take the whole home care arrangement into account. Developmental work is needed to design services that are helpful for family caregivers.     

The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home

Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers’ level of collaboration with nurses was significantly associated with their preparedness for caregiving.     

Informal caregivers'' participation in elderly-patient care: An interrupted time-series study

This study is an evaluation of a project in Finland that aimed to promote the participation of informal caregivers in the hospital care of elderly patients. The staff who worked in the wards that were studied built up activation programmes for informal caregivers, and changed ward policies to encourage caregivers' participation. To explore changes in caregivers' participation in the study and the control wards, non-equivalent control groups were used. During periods of two months in 1991, 1992 and 1993, the data were collected from informal caregivers (N = 369) using a structured questionnaire. The results indicated that total participation of informal caregivers in daily activities increased in long-term care settings, but not in the university hospital. However, a small increase in informal caregivers' participation in some daily activities of elderly patients took place in the study wards of each setting. The findings and implications for nursing are discussed.     

Quality of elderly-patient care: An interrupted time series study

This study is part of a project that aimed to increase the participation of informal caregivers in the hospital care for elderly patients. The staff who worked in the wards that were studied created activity programmes for caregivers and changed their ward policies to encourage the participation of the caregivers. In addition, quality assurance programmes were developed and primary nursing was introduced to ensure individualized, need-based and family centred care. In order to explore the changes in perceived quality of care, and to test the differences in care quality between the study and the control wards (i.e. two wards in a university hospital, two wards in a geriatric unit and two wards of a nursing home), the interrupted time series with a non-equivalent control group time series design was used. During periods of 2 months in 1991, 1992 and 1993 the data were collected from elderly patients ( n = 97) and their informal caregivers ( n = 369) using a structured questionnaire based on need theories. The results indicated that the quality of care was improved, especially in the study wards of the university hospital and of the nursing home. This care quality measure was found to be a useful tool for getting feedback from patients and their caregivers concerning care given. Aspects of nursing practice that needed to be improved were identified (i.e. poor communication between the patient, their caregiver and staff, and lack of support to the patient and caregiver by staff).     

Family Caregiving for Cancer Patients: the State of the Literature and a Direction for Research to Link the Informal and Formal Care Systems to Improve Quality and Outcomes

ObjectivesBased on recent shifts in reimbursement for cancer treatment from fee-for-service to bundled and value-based payment, this concluding article summarizes data from these papers and the large body of literature on caregiving to suggest how caregiving research might be redirected to link the formal with the informal systems to achieve higher-quality and lower-cost care. Caregiver dyads, the tasks of care, and strategies for training are presented.Data SourcesArticles in this issue of Seminars in Oncology Nursing, the larger body of caregiving literature, and the Oncology Care Model driving bundled payments and value-based care.ConclusionResearch on informal caregiving for cancer patients should begin to reframe the rich body of evidence available toward a focus on caregivers reactions to the tasks of care, the training necessary for caregivers to perform them, and how each contributes to quality care at lower costs and appropriate outcomes given patients’ stage of disease and goals of treatment.Implications for Nursing PracticeOncology systems must take a more active role in including patients and their families as partners to manage treatments and side effects to achieve the best possible patient outcomes. They must be able to evaluate the patient and the caregiver to determine what tasks they will be able to perform, and then make sure they have the training and resources to carry out those tasks. Training could be done by social media and through communication using patient portals that could be expanded through the electronic medical records to include caregiver portals, enabling caregiver questions and reports of patients’ conditions.     

The relationship between caregiving and employment. A study of stress in employed and unemployed caregivers of elderly persons

The need for persons to provide care on an informal basis to frail and dependent elderly persons has generated a "caregiving crisis" in this country. Middle age women, the traditional caregivers for most generations, are no longer readily available to provide informal care. Instead, they are likely to be struggling to cope with the dual demands of paid employment and family responsibilities. Significant differences exist between employed and unemployed caregivers in relation to age, marital status, gender, personal health status, and caregiver-care recipient relationships. However, no differences exist in relation to the amount of stress experienced as a consequence of caregiving responsibilities. Occupational health nurses have an ideal opportunity to help employed caregivers cope with their caregiving responsibilities both at the worksite and in their personal lives.     

COPD-intuition or template: nurses' stories of acute exacerbations of chronic obstructive pulmonary disease

Study rational. A number of nurse‐researchers have examined the experience of dyspnoea reduction during non‐acute phases of the chronic obstructive pulmonary disease (COPD). However, nurses working on in‐patient hospital units are frequently required to care for individuals suffering from acute exacerbations of their disease (AECOPD). These critically ill individuals present at health care institutions incapacitated by severe shortness of breath/dyspnoea that is frequently refractory to treatment. To date, little is known about the nurses’ understanding of the care they provide for individuals hospitalized because of these acute episodes of their chronic illness. Study objectives. The research project was undertaken, in part, to develop an understanding of nurses’ experience of caregiving for individuals hospitalized for in‐patient care during an AECOPD. Methodological design. This focused ethnographic narrative examined the caregiving stories of 10 nurse caregivers. The 10 nurse caregivers were interviewed while caring for a patient and their family during an experience of an AECOPD characterized by incapacitating breathlessness. Results. The nurse caregivers told a number of caregiving stories that illustrated a common care template that appears to be based on intuition or pattern recognition focusing on anxiety sometimes to the exclusion of dyspnoea. Conclusions. Analysis of these stories emphasized the need to facilitate nurses individualization of standard templates. More importantly, this analysis illustrated the critical need to develop strategies to facilitate the reshaping of inaccurate templates in the presence of new knowledge.     

Registered nurses' experiences of interaction with patients with mental health challenges in medical wards in Johannesburg

poggenpoel m. , myburgh c.p.h. & morare m.n. (2011) Journal of Nursing Management 19, 950–958 Registered nurses’ experiences of interaction with patients with mental health challenges in medical wards in Johannesburg Aim The aims of this research were to explore and describe registered nurses’ experiences of interacting with patients with mental health challenges in the medical wards of a public hospital in Johannesburg. Background Nurses are the major providers of hospital care and have become an important resource in the delivery of mental health care to patients with mental health challenges. However, the attitude and ability of many nurses in providing this care have been shown to be poor. Method In-depth phenomenological interviews were conducted with eight female registered nurses working in four medical wards where they interact with patients with mental health challenges. Results From the findings it is clear that registered nurses experienced frustration, unhappiness, fear and perception of danger when interacting with patients with mental health challenges in their wards. This could be attributed to a lack of knowledge and skills in mental health. Conclusion Registered nurses have negative experiences with interaction with patients with mental health challenges in medical wards because of a lack of knowledge and skills in mental health. Implications for nursing management Ward managers can facilitate the psychological empowerment of registered nurses.     

Informal carers of older family members: how they manage and what support they receive from respite care

Aims. To describe informal carers’ coping strategies and their experiences of the support provided by respite care. Background. The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution. Design. Survey. Methods. The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers’ Assessment of Managing Index ( Nolan et al. 1995 ) and an index developed by the researchers. Results. Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers’ quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family’s situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship. Conclusions. The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role. Relevance to clinical practice. Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well‐being of the entire family.     

The competing demands of employment and informal caregiving to disabled elders

The competing demands of work and elder care are the subject of this study. The employment decisions of the informal caregivers of a nationally representative sample of disabled elders were examined using a nested multinomial logit model. Findings from the work accommodation model demonstrated that primary caregivers and those caring for elders with greater care needs are more likely to take unpaid leave, reduce work hours, or rearrange their work schedules to assume elder care responsibilities. Being female, white, and in fair-to-poor health also increased the likelihood of work accommodation. The model predicting employment of a caregiver revealed that the prospect of having to accommodate work to the demands of caregiving keeps some people from work entirely. However, not all caregivers would choose to work in the absence of caregiving responsibilities. After controlling for the probability of work accommodation, need for care, and availability of others to care, it is more likely that younger, white and more highly educated caregivers will be employed. The self-selection of working caregivers observed in this study should be considered when forecasting changes in caregiving costs associated with changes in the labor force participation of caregivers as a result of deliberate policies or social and demographic trends.     

The concept of vulnerability in relation to child protection: health visitors'' perceptions

Patients with AIDS are permanently dependent on medical and technical nursing care. During a certain phase of the disease some of the patients have to visit the out-patient clinic of the hospital for regular treatment. It was noticed that AIDS patients find these visits a severe burden. Therefore in Rotterdam an experiment has been started to provide them the technical-medical and nursing care at home instead of at the out-patient clinic. During the experiment, specialized hospital nurses visited the patients at home. They worked in close collaboration with the community nurses. An exploratory study was carried out to assess the prospects and difficulties of this new kind of home care for AIDS patients from a medical, psycho-social and organizational point of view. The results suggested that it is possible to relocate the technical-medical and nursing care from the out-patient clinic to the patients' home. This specialized home care is seen as desirable from the perspectives of the AIDS patients and informal and professional caregivers. However, some organizational aspects, like the co-ordination and communication among caregivers and the availability of the specialized hospital nurses during the weekend, must be improved in the future.     

Caregiving stress among community caregivers for the elderly: does institutionalization make a difference?

Nurses in community settings are frequently exposed to elderly persons who receive a significant amount of physical and/or psychosocial support from one or more informal caregivers. Although numerous investigations exist examining stress and coping in persons who provide such care for elderly persons, little is known about the caregiver's status once full-time caregiving ceases. This study describes emotional and physical components of caregiving stress in a convenience sample of 124 caregivers. Of these, 31 had placed their charge in a nursing home, while 93 had not. A multivariate analysis of variance (MANOVA) between placed-nonplaced groups revealed no significant differences in the total score or Role and Personal Strain subscales of the Burden Interview (J. Zarit & S. Zarit, 1983). Implications for community health nursing practice involve providing ongoing counseling and support of the caregiver and his or her charge, preparing both for the placement experience should it be indicated, and continued follow-up care post-placement. Greater collaboration between community-based and institutionally based nurses can facilitate implementation of these strategies.     

Participation of caregivers in elderly-patient hospital care: informal caregiver approach

This preliminary study is part of an ongoing action research project in three different kinds of hospitals Two wards in each hospital volunteered for the study The purpose was to discover in which activities of daily living informal caregivers currently participate and to what extent Participation of informal caregivers consisted of 17 activities Elderly patients ( n = 45) eligible for the study and informal caregivers ( n = 147) completed a questionnaire They were asked in which daily activities informal caregivers participate and how often, options ranging from daily to never Responses of informal caregivers are reported in this paper Results indicated that relatives and other significant others visited elderly hospital patients often, however, their participation in activities of daily living in hospitals was limited Mostly they gave emotional support and helped the patient to drink, stand up/get into bed and sit Implications for nursing are discussed     

Tacit definitions of informal caregiving

AIMS OF THE STUDY: This study describes three tacit definitions of informal caregiving and explores the extent to which differences in these tacit definitions explain variation in caregivers' negative mood over time. BACKGROUND/RATIONALE: There is a growing need to understand the sources of stress and gratification for informal caregivers. Tacit definitions of informal caregiving refer to caregivers' understanding of what caregiving entails. These definitions are tacit because they arise from caregivers' taken-for-granted understanding rather than formally articulated positions concerning caregiving. DESIGN/METHODS: A random sample of 60 men, all of whom were caregiving partners of men with acquired immunodeficiency syndrome (AIDS), was drawn from a larger cohort of 253 participants in the University of California San Francisco (UCSF) Coping Project (1990-1997). The caregivers were assessed bimonthly for 2 years with procedures that included a semi-structured interview focusing on a recent stressful event involving caregiving, and quantitative measures of well-being. RESULTS/FINDINGS: Interpretive phenomenological case studies of the narrative accounts of the 60 caregivers produced three tacit definitions of caregiving - engagement, conflict and distance. These three tacit definitions were distinguished by differences in learning about caregiving, involvement in health care decisions, caregiving activities and reported sources of stress. The three groups differed on measures of dyadic adjustment, depression, anger and anxiety. CONCLUSIONS: Better understanding of caregivers' tacit definitions can facilitate and enhance effective support and interventions for caregivers.     

Caregiver perceptions of accomplishment from assisting people with multiple sclerosis

Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.

Implications for Rehabilitation

• Assistance from informal caregivers enables people with multiple sclerosis to remain in their homes as their functional dependence becomes more permanent and their need for personal assistance increases.

• Caregiver perceptions that assisting the person with multiple sclerosis was emotionally draining and a spousal relationship were significantly associated with negative perceptions of accomplishment.

• Health professionals who treat informal caregivers, as well as health professionals treating people with multiple sclerosis, should be sensitive to the impact care giving has on the emotional health of caregivers, especially spousal caregivers.