Unmet expectations: why nursing home staff leave care work

Background.  The shortages of healthcare professionals have been a common topic in care of older people.
Aim and objectives.  The aim of the present study was to illuminate what caused the nursing home caregivers to decide to leave their employment.
Design.  A two-year intervention study was performed in three nursing homes in Sweden.
Method.  This qualitative interview study was conducted with 18 caregivers who decided to leave their employment during the first year. Content analysis was the method used to analyse the interviews.
Result.  The caregivers' decisions to leave their work in care of older people could be encompassed in one main category: 'Unmet Expectations'. Their experiences were lack of encouragement and trust and professional development. Feelings of insecurity, different opinions on the care delivered, being disregarded and betrayed followed as did thoughts of leaving work and pursing other opportunities.
Conclusion.  The main findings indicated that organizational work pressure with information about pending financial cutbacks caused the caregivers to leave the nursing homes.
Relevance to clinical practice.  The study's results show the value of meeting the needs of caregivers, as caregivers consider that they meet the needs of the older people. Optimal use of caregivers' skills, experiences, competence and respect for their aspirations is also likely to result in cost-efficient care.     

The experiences of Taiwanese women caring for parents-in-law

The experiences of Taiwanese women caring for parents-in-law Using grounded theory, semistructured in-depth interviews were conducted to explore the experiences of Taiwanese women who were caregivers for their parents-in-law. Thirty-one Taiwanese women aged 23-58 participated in this study. 'Just doing' emerged as the core category and reflected the Taiwanese women caregivers' process of striving to continue to fulfil the demands of their role during the period of commitment to their parents-in-law's care. The related categories surrounding the core category in the paradigm for this study include: being called, caring for, holding up, keeping harmony, and maintaining filial piety. 'Being called' reflected the reasons that these women became caregivers to their parents-in-law under circumstances heavily influenced by cultural expectations. 'Caring for' provided the context for activities involved in providing daily comfort, keeping watch and seeking assistance when necessary. The category of 'holding up' reflected the caregiver's interpretation of her duty, the extent of the difficulties she experienced and her responses to those difficulties. A philosophy of life, which strongly emphasizes 'keeping harmony' influenced how the caregiver interpreted her caregiving role and her ability to ask for assistance or more resources to overcome difficulties posed by the situation. Maintaining filial piety was identified as a primary duty, a lifelong commitment and a desired outcome. However, striving to achieve this outcome resulted in differing caregiver perceptions, ranging from serenity to personal self-sacrifice. The findings clearly suggested that caregiving behaviours were influenced by cultural expectations when the parent-in-law was ill. This study of Taiwanese women caregivers' experiences may be beneficial in facilitating the development of a comprehensive policy for long-term care as well as suggesting possible intervention strategies for individual and family care. Recommendations for future research focus on cultural determinants of caregiving roles and coping strategies.     

Variables related to caregiver behaviors with cognitively impaired elders in institutional settings

The purpose of this study was to identify variables that might influence the behaviors of institutional caregivers when they interact with institutionalized, cognitively impaired elders. Independent variables included type of care situation, type of institution and nursing unit, and selected characteristics of both the caregiver and elder. The care situation was found to have a significant effect on caregiver behaviors. Caregiver characteristics of knowledge of dementia, experience in working with demented elders, and total years of education were significantly related to several caregiver behaviors. Elder characteristics of years of education, number of diagnoses, time on the nursing unit, age, self-care ability, and extent of dementia were related to several caregiver behaviors. Caregiver behaviors did not vary by the elder's gender. © 1993 John Wiley & Sons, Inc.     

The Influence of Caregiver Mastery on Depressive Symptoms

PURPOSE: The purpose of this study was to explore how the relationship between care recipients' problem behaviors and caregivers' depressive symptoms varies as a function of caregiver mastery, controlling for the effects of caregiver age, gender, and relationship to the care recipient in caregivers of people with primary malignant brain tumor (PMBT). DESIGN: A cross-sectional design was used to gather data via telephone interviews from 95 caregivers of people with primary malignant brain tumor, recruited from 2003 to 2004 from a brain tumor treatment center, two national support groups, and a statewide cancer registry. METHODS: Measures for the study included the Neuropsychiatric Inventory-Questionnaire, Caregiver Mastery, and the Center for Epidemiologic Studies-Depression. A stepwise regression procedure was used to evaluate potential moderating and mediating relationships. FINDINGS: Data did not indicate that caregiver mastery was a moderating variable. The analysis showed caregiver mastery as a partial mediator, with both a direct effect of care recipients' problem behaviors on caregivers' depressive symptoms and an indirect effect through caregiver mastery. Concerning the indirect effect, care recipients' problem behaviors were related to lower levels of caregiver mastery, which in turn were related to more depressive symptoms in caregivers. CONCLUSIONS: Findings showed a link between care recipients' problem behaviors and caregivers' depressive symptoms, a relationship that has not been well established in oncology. This association indicates one mechanism through which problem behaviors in the care recipient might lead to caregiver depressive symptoms.     

Evaluation of an educational program for the caregivers of persons diagnosed with a malignant glioma.

BACKGROUND: Caring for a loved one with a malignant glioma can be a formidable responsibility. The guarded prognosis, side effects of treatments, and changes in brain function, personality and behaviour pose unique challenges in care provision by family members. It is rare that institutions provide educational programs for caregivers. PURPOSE: To evaluate the impact of providing information in an educational program to caregivers of patients diagnosed with a malignant glioma. METHODS: A structured educational program for caregivers of brain tumour patients was developed based upon multidisciplinary expert opinion and caregiver feedback. Twenty-four caregiver participants were enrolled in the program. Knowledge was assessed before, immediately following, and four to six weeks following the program. Open-ended questions were used to explore the caregivers' experiences, as well as additional benefits derived from the program. RESULTS: Knowledge scores on testing immediately after the program and four to six weeks following the program were statistically significantly improved from baseline testing, although there was a decline in scores four to six weeks after the program. These findings demonstrate effective knowledge transfer (recall of the information) immediately after the education program and four to six weeks later. Specific qualitative and quantitative data serve as a basis for understanding caregivers' needs and experiences.     

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.     

Evaluation of a weekend respite program for persons with Alzheimer disease.

The documented under-use of respite programs in the face of unmet family caregiver needs is puzzling. The purpose of this study was to explore family caregivers' experience with a pilot respite program of weekend care for persons with Alzheimer disease (AD) or a related dementia. The goal-free evaluation approach captured the responses of 18 family caregivers to a pilot program developed by a community nursing organization. A content analysis of the caregiver interviews identified 3 categories: caregiver self-care, relief for the caregiver, and safety and comfort of the family member. The results suggest a link between the family caregiver achieving respite and the safety and comfort of the family member. The caregivers' perspective regarding the costs and benefits of respite influences the frequency with which they use the program. Research implications are 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.     

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.     

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample This study explored the needs of family caregivers during the transition from hospital to home. Data from 37 face-to-face interviews with 16 caregivers before discharge and at 2 weeks and 1 month after discharge were subjected to constant comparative analysis. Findings revealed changes in family caregivers' needs during the discharge transition. While preparing to take caregiving responsibility, caregivers reported a need for various types of information. After the discharge, but before home caregiving settled into a pattern, they needed help with caregiving practices. After reaching a pattern for providing family care, caregivers frequently reported needs for continuous emotional support. These findings provide a basis for transitional care services such as discharge planning and home health care services.     

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.     

Dis/integrated care: family caregivers and in-hospital respite care

AIM: The aim of this study was to explore family caregivers' experiences of in-hospital respite care for people with dementia and the factors that influenced their perceptions of the service. BACKGROUND: The provision of respite care is based on the assumption that temporary relief from caregiving will relieve caregiver stress and may possibly extend the duration of home care. Research evidence suggests that this is a simplistic perspective which fails to account for families' concerns about the quality of institutional care and the impact of relocation on the person being cared for. DESIGN: Nine family caregivers, using four different hospitals sites were interviewed during a period of 3 years from 1994 to 1997. The research texts were analysed using a critical discourse analysis approach drawing on the work of Foucault. FINDINGS: Family caregiver texts were distinguished by difference rather than by homogeneity. Caregivers occupied a range of positions in terms of their ability to take advantage of the respite time intermittent care offered. My reading of these texts has highlighted the aspects of nurse-family relationships that ameliorated, or alternately exacerbated, the tensions felt by caregivers, as they were torn between the necessity to have a break and their anxieties about the impact of in-hospital respite care on the person with dementia. CONCLUSION: Nurses' practices in this study were a critical element in facilitating, or alternately constraining, family caregivers' ability to relinquish care and to take full advantage of the respite time. The research findings highlight the need for nurses and other formal caregivers to locate themselves in a secondary and supporting caregiving role, to acknowledge the family caregivers as the primary caregiver, and use family caregivers in-depth and intimate knowledge of the needs of their relative to inform care within the institutional setting.     

Caregiver perspectives of memory and behavior changes in stroke survivors.

Post-stroke memory and behavior changes (MBC) are associated with negative outcomes for stroke survivors and caregivers. This article describes the types of MBC that occur most frequently and caregivers' responses to these behaviors. Data were obtained through in-person interviews and administration of questionnaires to 132 caregivers of first-time stroke survivors 3-9 months after stroke. MBC were measured with a modified version of a Memory and Behavior Problems checklist. On average, caregivers reported 7.7 +/- 3.6 (range 0-17) behaviors. Common stroke survivor MBC included appearing sad or depressed, interrupting the caregiver, and being restless or agitated. These MBC were distressing to caregivers. Caregivers may not recognize some MBC as potential symptoms of depression. In addition, caregiver misunderstanding of the amount of control survivors may have over some behaviors has implications for rehabilitation and caregivers' responses to these changes.