Complexity of family caregiving and discharge planning

Older adults and their family caregivers face numerous decisions about hospital discharge, including where they will go and how they will receive care. Older adults who account for nearly 37% of all hospital discharges often need care and support of family members at the time of hospital discharge. This study examines decisions made by hospitalized older adults, families, and health care team members (HCTMs) about hospital discharge. The sample included older adults (n = 13, average age 84), family members (n = 12, average age 71), and HCTMs (n = 7, average age 47). Findings revealed the complexity of hospital discharge planning for older adults through five themes as follows: (a) home, (b) staying independent, (c) "advocating for them," (d) deciding what to tell, and (e) changing the plan.     

Family caregivers of palliative cancer patients at home: the puzzle of pain management

The purpose of this grounded theory study was to understand the processes used by family caregivers to manage the pain of cancer patients at home. A total of 24 family caregivers participated. They were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews and field notes. Data analysis was based on Strauss and Corbin's (1998) requirements for open, axial, and selective coding. The result was an explanatory model titled "the puzzle of pain management," which includes four main processes: "drawing on past experiences"; "strategizing a game plan"; "striving to respond to pain"; and "gauging the best fit," a decision-making process that joins the puzzle pieces. Understanding how family caregivers assemble their puzzle pieces can help health care professionals make decisions related to the care plans they create for pain control and help them to recognize the importance of providing information as part of resolving the puzzle of pain management.     

Review of Intervention Studies of Families with Hospitalized Elderly Relatives

Purpose: To critique intervention studies of family caregivers in the hospital care for elderly relatives for (a) synthesizing the characteristics of interventions and outcomes, (b) evaluating the effectiveness of the intervention studies, and (c) identifying the strengths and limitations of the intervention studies as a basis for future research.
Methods: An integrated literature review was used to examine nine intervention studies (1983–2003) of adult family caregivers of older family members in the hospital setting.
Findings: Although the existing intervention studies have provided a solid base for further study of family care for hospitalized elders, the analysis indicated the following limitations of the existing literature: (a) lack of a clearly defined theoretical framework to guide the interventions and selection of study variables, (b) lack of comparison groups and observation of interventions, and (c) limitations with generalizability of findings.
Conclusions: Nine intervention studies of family caregivers in the hospital care of elderly patients age 60 years or above were found that were conducted in the past 10 years. Although progress has been made in family caregiving of hospitalized elders, future research should include outcomes based on well-defined theoretical frameworks, control of confounding variables, and samples from diverse populations.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

Use of formal community services by elders and their family caregivers 2 weeks following hospital discharge*

Early identification of elders who need care following hospitalization might enhance their health and the health of family members who help them with managing their care. The purpose of this study was to: (a) identify pre-discharge predictors of resource use following hospitalization; (b) describe the formal community services used by elders and their family caregivers during the 2 weeks following hospitalization; and (c) determine whether there is a difference in hospital re-admissions between elders who receive community nursing services compared with those who do not receive any services. The sample consisted of 185 elder/caregiver dyads in which the elders were hospitalized for an acute episode of a chronic condition. Both patients and family caregivers were interviewed before discharge and 2 weeks post-discharge. The findings indicate that pre-discharge functional ability and age are statistically significant predictors of home care services used 2 weeks post-discharge. The findings also suggest that elders who receive visiting nurse services are less likely to be re-admitted to the hospital.     

Exploring the roles of men. Caring for demented relatives

1. Men are under-represented among family members providing care to a demented relative. 2. Few differences were noted among the male caregivers: men with demented relatives at home spent more time daily on caregiving tasks although both groups of men tended to rely on others for the "hands-on" care needed; institutionalized demented relatives were rated as being more impaired than those at home; and men caring for relatives at home seemed determined to continue in their role. 3. It is possible that men find it more difficult to become caregivers because of lack of support from other family members, the impairment of the relative and the need for direct care, and men's lack of involvement in providing direct care. 4. Nurses involved in dementia care should offer instructional sessions aimed at men, provide assistance in working through emotional problems, and encourage their participation in future research on the male caregiving experience.     

Variations in and factors influencing family members' decisions for palliative home care

The purpose of this paper is to describe the variations in and factors influencing family members' decisions to provide home-based palliative care. Findings were part of a larger ethnographic study examining the social context of home-based palliative caregiving. Data from participant observations and in-depth interviews with family members (n=13) providing care to a palliative patient at home, interviews with bereaved family members (n=47) and interviews with health care providers (n=25) were subjected to constant comparative analysis. Findings indicate decisions were characterized by three types. Some caregivers made uninformed decisions, giving little consideration to the implications of their decisions. Others made indifferent decisions, whereby they reluctantly agreed to provide care at home, and still others negotiated decisions for home care with the dying person. Decisions were influenced by three factors: fulfilling a promise to the patient to be cared for at home, desiring to maintain a 'normal family life' and having previous negative encounters with institutional care. Findings suggest interventions are needed to better prepare caregivers for their role, enhance caregivers' choice in the decision-making process, improve care for the dying in hospital, and consider the development of alternate options for care.     

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.     

Stages of change for physical activity among family caregivers

AIM: This paper reports a study exploring the factors that affect stages of change for regular physical activity in family caregivers in Taiwan. BACKGROUND: In Chinese society, family caregivers play a significant role in the treatment of mentally ill patients in home care because of Chinese cultural obligations. Prochaska and DiClemente's transtheoretical model suggests that individuals adopting physical activity behaviour move through five stages of change. Discovering the factors that affect the stages of change for physical activity of family caregivers of mentally ill patients could have a significant impact on the health of this population, as well as on the health of the patients for whom they care. METHODS: Family caregivers' stages for regular physical activity were assessed using The Stages of Change for Regular Physical Activity Questionnaire. Demographic factors were measured using The Family Caregiver's Demographic Characteristic Questionnaire. Data were collected from 108 primary family caregivers of mentally ill patients receiving home care from a psychiatric hospital in southern Taiwan. RESULTS: Older caregivers were more likely to be in the action/maintenance stage compared with younger caregivers age [r(s)(108) = 0.24, P < 0.05]. Caregivers' stages of change were significantly associated with caregivers' relationship to the patient [chi(2)(6, n = 108) = 13.68, P = 0.03], and marital status [chi(2)(4, n = 108) =10.56, P = 0.03]. CONCLUSIONS: The findings on relationships between stage of change for physical activity, caregivers' age, relationship to the patient, and marital status represent a first step in better understanding those who do and do not intend to engage in a regularly active lifestyle among family caregivers in Taiwan. This study reveals that cultural issues may play a critical role in physical activity behaviour among Taiwanese family caregivers and need to be further investigated.     

Tactful monitoring: how thai caregivers manage their relative with schizophrenia at home

Approximately 343,680 individuals in Thailand suffering from schizophrenia are cared for at home by relatives, most of whom have a little knowledge of the disease; therefore they're left to develop their own strategies of care. Data were collected by in-depth interviews and observation involving 17 caregivers of relatives diagnosed with schizophrenia. Data were analyzed using the constant-comparative method of grounded theory. Caregivers' chief concern was avoiding psychotic episodes. They do this through a process we call "tactful monitoring," which includes the co-variables "unobtrusive observation" and strategies for calming. Caregivers follow a trajectory that leads them to a state of exhaustion, tired and sad, and fearful about the future care of their loved one. Findings from this study led the authors to conclude that in Thailand, caregivers were able to develop creative ways of tending to their relatives with schizophrenia at home, but not without significant cost to themselves. Limited provision for caregiver education and respite exists. If education and increased respite care were instituted, caregivers could benefit, and patients might avoid expensive inpatient visits.     

Problem-solving counseling for caregivers of the cognitively impaired: effective for whom?

BACKGROUND: Individualized problem-solving counseling for caregivers of cognitively impaired relatives is thought to help caregivers cope with the stress and burden of caregiving. Few studies have shown the effectiveness of counseling for these caregivers. OBJECTIVES: To determine the effectiveness of individualized problem-solving counseling by nurses for caregivers and the expenditures of health care utilization. METHOD: Caregivers (n = 77) of the cognitively impaired living at home were randomized to receive nurse counseling or not. Psychosocial adjustment to their relative's illness, psychological distress, burden, coping skills, and expenditures were measured after 6 months and 1 year. RESULTS: Although on average, all caregivers receiving nurse counseling indicated no improvement in psychosocial adjustment to their relative's illness, psychological distress, or caregiver burden, they found counseling very helpful and it was effective for a subgroup of caregivers. Those with poor logical analysis coping skills at baseline had decreased psychological distress (F(1,53) = 9.7, p = .003) and improved psychosocial adjustment (F(1,53) = 4.7, p = .035) after 1 year. Caregivers in control and counseling groups whose relatives entered a nursing home improved their psychosocial adjustment 23% on average whereas those continuing to live in the community decreased by 8%. Almost half as many relatives entered nursing homes in the counseling group (n = 9 vs. n = 5) but these compared to control group relatives had greater annualized per person expenditures for health and social services (Cdn$23,437 vs. Cdn$15,151). CONCLUSIONS: Caregivers found nurse counseling most helpful. Those indicating infrequent use of logical analysis coping skills showed benefits.     

Hip fracture: family caregivers' burden and related factors for older people in Taiwan

Aims. The purpose of this study was to explore the burden experienced by caregivers during the transition from hospital to home. Background. With a growing older population, home‐based care has gradually gained more recognition. Most older people with hip fracture in Taiwan have to be discharged at a relatively early stage. Therefore, the caregiving tasks falls on the families. Methods. A total of 98 older people with hip fracture and their caregivers were interviewed. The sample was selected from three medical centres in Taipei, and questionnaires were collected at one week and one month following hospital discharge. Results. (i) Family caregivers were usually women (63.3%) with spouses being the primary caregivers in most cases (30.6%). About one‐third of caregivers took care of other family members on top of their responsibilities caring for the sick elders at home, and 77.6% shared the care tasks with others. (ii) The caregivers experienced moderate burdens. About 91.8% of caregivers reported ‘I feel sad watching the elder's health deteriorating’, 84.9% reported ‘I must keep an eye on the elder constantly’ and 56.7% reported ‘Taking care of the sick elder at home makes me feel exhausted’. (iii) Caregiver burden and the functional level of older people were adversely correlated. (iv) Caregivers who were unable to access other resources for help and/or had provided care to the older person prior to the fracture resulting in hospitalization experienced a higher burden. Conclusions. These findings should be helpful in the formulation of evidence‐based discharge planning and home health care services. Relevance to clinical practice. Comprehensive discharge planning and developing social support systems for family caregivers to reduce caregivers burden are needed.     

Caregiving at the end of life: Perceptions of health care quality and quality of life among patients and caregivers

This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a "unit of care," and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.     

Living and coping with Parkinson's disease: perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n?=?17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.     

Accommodating the stranger en casa: how Mexican American elders and caregivers decide to use formal care

Mexican American elders have higher levels of functional impairment and chronic illness, yet they use formal home care services less than do non-Hispanic White elders. This article describes the processes by which Mexican American elders and their caregivers decide to use home care services. Interviews were conducted with Mexican American elders (n = 11) and family caregivers (n = 12) for a sample of 23 individuals. The emerging substantive grounded theory included three stages that described the process of deciding to use home care services: Taking Care of our Own, Acknowledging Options, and Becoming Empowered. The processes describe how Mexican American families eventually accept home care services while maintaining their cultural norm of taking care of elders. The theory gives voice to both elders and caregivers in this process, adds to extant knowledge, and shapes interventions to support traditional Mexican American family values such as elders' staying at home as long as possible. The theory meets nursing's goals of reducing health care disparities by improving or sustaining elders' health and functional ability, decreasing the caregiving burden, and reducing health care costs.     

Families and hospitalized elders: A typology of family care actions

The extensive care provided by families to their elderly relatives in the home is well documented. Although family caregiving is likely to be continued during hospitalization of elderly relatives, limited research has been conducted to address the nature of family care for hospitalized elders. The main purpose of this qualitative study was to refine the content domain of family care for hospitalized elders. Altogether 25 interviews were done. Of the 16 participants, 6 were family members, 6 were patients, and 4 were nurses; 7 participants were interviewed once and 9 participants were interviewed twice. Qualitative analysis based on Lofland and Lofland's (1984, 1995) approach resulted in the identification of three major content domains: family members providing care to the patient, working together with the health care team, and taking care of themselves. This typology suggests a shift of research in this area from its current focus on family needs to a view of family caregivers as partners with the health care team.     

Incidence, Source, and Nature of Complaints Received in a Large, Urban Emergency Medical Services System

Objective : To document the incidence, source, and reasons for all complaints received by a large municipal emergency medical services (EMS) program.
Methods : A retrospective review of all complaints received during three consecutive years (1990–1992) in a centralized EMS system serving a large municipality (population 2 million). All cases were categorized by year, source, and nature of the complaint.
Results : In the three study years, EMS responded to 416, 892 incidents with nearly a half–million patient contacts. Concurrently, 371 complaints were received (incidence of 1. 12 per thousand); 132 in 1990, 129 in 1991, and 110 in 1992. Most complaints involved either: 1) allegations of "rude or unprofessional conduct" (34%), 2) "didn't take patient to the hospital" (19%), or 3) "problems with medical treatment" (13%). Only 1. 6% (n = 6) were response–time complaints. Other complaints included "lost/damaged property," "taken to the wrong hospital," "inappropriate billing," and "poor driving habits." The most common sources were patient's families (39%) and the patients themselves (30%). Only 7. 8% were from health care providers.
Conclusion : Reviews of complaints provide information regarding EMS system performance and reveal targets for quality improvement. For the EMS system examined, this study suggests a future training focus on interpersonal skills and heightened sensitivities, not only toward patients, but also toward bystanders and family members.     

Family caregivers: the experience of Alzheimer's disease

This qualitative, interpretive study generated a model to describe the course of Alzheimer's disease (AD) as experienced by family caregivers in interaction with an afflicted relative. Stages of experiencing AD from a family caregiver's perspective were identified. These included Stage 1: noticing; Stage 2: discounting and normalizing; Stage 3: suspecting; Stage 4: searching for explanations; Stage 5: recasting; Stage 6: taking it on; Stage 7: going through it; and Stage 8: turning it over. Since describing typical stages of Alzheimer's dementia by focusing on the patient's symptoms has generated controversial results, this study shifted the focus to the lived experience of family caregivers. It supports prior contentions that patterns and progression in patients themselves are variable; however, families can be offered knowledge about the disorder's course to ease their fears and their difficulties in interpreting interactions with their demented relatives. The study is based on "methods for discovering" theory. A purposeful sample of 20 caregivers was interviewed for at least 2 hours in their own homes. All caregivers held primary responsibility for home care for a demented relative and had consented to participate in the study.