Supporting patients and their caregivers after-hours at the end of life: the role of telephone support

Twenty-four hour access is accepted as a gold standard for palliative care service delivery, yet minimal data exist to justify the cost of this initiative to health care planners and policy makers. Further, there is scant information concerning optimal and efficient methods for delivering after-hours palliative care advice and support, particularly in regional and rural settings. This article reports on an evaluation of a local after-hours telephone support service in regional Australia. A centralized after-hours telephone support service was provided by generalist nurses at a Multipurpose Service in a rural community. A mixed-method evaluation, including semistructured interviews, was undertaken after 20 months of operation. During the period March 31, 2005 until November 15, 2006, 357 patients were registered as part of the Mid North Coast Rural Palliative Care Program. Ten percent of patients or their caregivers accessed the After-Hours Telephone Support Service, representing 55 occasions of service. The most common reason for contacting the service was for reassurance surrounding medication usage, symptom management, and anxiety. This experience demonstrates proof of concept that acceptable palliative care advice can be provided by generalist nurses in a cost-efficient manner. Common patterns emerged in utilization that can assist in service planning and staffing formulae. There is also a need to investigate mechanisms of interfacing with larger scale call centers, to explore the differences within generic and disease-specific approaches, and assess the appropriateness of after-hours telephone support with different cultural groups.     

Factors associated with depressive distress among Taiwanese family caregivers of cancer patients at the end of life

Family caregivers in East Asian countries are known to have a strong sense of filial piety and a traditional caregiving ideology. They are generally presumed to be protected from psychological distress arising from caregiving. However, there is scant information regarding the impact of caregiving on Chinese/Taiwanese families. The purpose of this study was aimed at identifying those family caregivers of Taiwanese terminally ill cancer patients who are at risk of experiencing depressive distress from the following three categories of predisposing factors: 1) contextual factors; 2) stressors; and 3) appraisal of the caregiving situation.Of the 170 Taiwanese family caregivers of terminally ill cancer patients that participated in this survey, 129 (75.9%) were at an extraordinarily high risk of being distressed because of depressive symptoms (CES-D > 15). Results indicated that family caregivers were vulnerable to clinically depressive distress if they were the patient's spouse (adjusted odds ratio (AOR): 2.89; 95% confidence interval (CI): 1.19-7.01), or evaluated caregiving as imposing a greater negative impact on their own health (AOR: 1.27; 95% CI: 1.09-1.47). In contrast, if family caregivers felt very confident in their knowledge of how to take care of the patient at home (AOR: 0.35; 95% CI: 0.15-0.81), or were sufficiently aware of the patient's thoughts and feelings about disease experiences and symptoms (AOR: 0.47; 95% CI: 0.25-0.88), they were less likely to suffer from depressive distress.These finding have significant clinical implications when they are put into the context of Confucian cultures which place great emphasis on filial piety and familism. Interventions and policy should be developed to target spousal caregivers to enhance their confidence in caregiving and understanding of the patient's disease experiences. This will reduce the negative caregiving impact on the caregiver's health, which in turn may prevent the development of depressive distress among family caregivers.     

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.     

Experience of meaning in life in bereaved informal caregivers of palliative care patients

Purpose

Providing care for terminally ill family members places an enormous burden on informal caregivers. Meaning in life (MiL) may be a protective factor, but is jeopardised in caregiving and bereavement. This study evaluates the following questions: To what extent do bereaved informal caregivers of palliative care (PC) patients experience meaning in their lives? What differences emerge in carers compared to the general German population? How does MiL relate to well-being in former caregivers?

Methods

Eighty-four bereaved PC caregivers completed the Schedule for Meaning in Life Evaluation, the Brief Symptom Inventory, the WHOQOL-BREF, a single-item numerical rating scale of quality of life, and the Satisfaction with Life Scale. The experience of MiL of bereaved caregivers was compared to a representative population sample (n?=?977).

Results

The overall MiL fulfillment of bereaved caregivers (69 % female, age 55.5?±?12.9 years) was significantly lower than in the general population (68.5?±?19.2 vs. 83.3?±?14, p?<?.001), as was the overall importance ascribed to their meaning framework (76.6?±?13.6 vs. 85.6?±?12.3, p?<?.001). PC caregivers are far more likely to list friends, leisure, nature/animals, and altruism. Higher MiL was correlated with better life satisfaction and quality of life.

Conclusion

Coping with the loss of a loved one is associated with changes in MiL framework and considerably impairs a carer's experience of MiL fulfillment. Individual MiL is associated with well-being in PC caregivers during early bereavement. Specific interventions for carers targeted at meaning reconstruction during palliative care and bereavement are needed to help individuals regain a sense of meaning and purpose.     

Health-related quality of life among informal caregivers assisting people with multiple sclerosis

Objective.?To identify factors affecting the health-related quality of life (HRQOL) of informal caregivers assisting people with (multiple sclerosis) MS who have greater functional impairment.

Methods.?Data were collected in a national survey of 530 people who provided informal care to people with MS. Multiple linear regression models analyzed these data.

Results.?Poorer overall health for the person with MS, stronger agreement by caregivers that care giving was burdensome or emotionally draining, and the caregiver's need for mental health counseling in the past 12 months were associated with lower mental dimensions of HRQOL for the informal caregiver. Greater caregiver satisfaction with the access the person with MS had to MS-focused care was associated with higher mental dimensions of HRQOL among caregivers.

Conclusions.?Increasing access to MS-focused care could improve not only the health of people with MS, but also improve the mental dimensions of caregiver HRQOL. Our findings highlight the importance of addressing the mental health needs of informal caregivers assisting people with MS.     

Living with multiple myeloma: experiences of patients and their informal caregivers

Goals of work  

The purpose of this study was to explore the experience of living with myeloma after completion of treatments in patients and their informal caregivers.     

Self-care at the end of life in patients with heart failure

Promoting adherence to self-care illness management strategies among patients with heart failure (HF) has been associated with a number of positive health outcomes. Yet, little is known about health outcomes related to self-care in the "sickest of the sick"-those patients with advanced HF who are approaching the end of life. Clinicians and researchers must determine how self-care interventions are defined in the advanced HF population. For example, what is meant by self-care illness management in patients who are symptomatic with exertion may differ from that of patients who are predominantly symptomatic at rest. Our challenge is to develop the simplest, least burdensome self-care illness management interventions that target the most meaningful outcomes for patients, their families, and the healthcare system.     

Quality of life and burden of informal caregivers of stroke survivors

Stroke rehabilitation has concentrated on patient-focused intervention, which has reduced the level of disabilities and has increased the number of stroke survivors being managed at home by caregivers. This study was aimed at determining the level of strain experienced by the caregivers of stroke survivors and the quality of life (QoL) of these caregivers. The QoL and caregiving burden among informal caregivers of stroke survivors seen at the physiotherapy outpatient clinic of two hospitals in south-western Nigeria were documented. Participants completed the Personal Wellbeing index for QoL measurement and Modified Caregivers Strain Index for measurement of Caregivers Burden Score. A total of 130 informal caregivers of stroke survivors participated in this study. The mean age of caregivers was 41.1 ± 14.0 years, while that of stroke survivors was 60.4 ± 10.9 years. Among the stroke survivors, 75 (57.8%) were female, whereas 74 (56.9%) of the caregivers were males. The results showed that caregivers' burden was inversely correlated to their QoL (p < 0.001). The lower functional status of the stroke survivors, as recorded by modified Rankin score and Barthel Index, was significantly associated with lower QoL and higher caregiver strain index of the caregivers.     

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.     

Dimensions of informal care and quality of life among elderly family caregivers

The aim was to investigate dimensions of caregiving activities among elderly (75+) caregivers based on Nolan's model and to study the dimensions in relation to health-related quality of life (Short Form 12). Responses to a Swedish postal survey (n=4278, response rate 75-79 years old: 60%; 80-84: 56%; 85-89: 48% and 90+: 42%) showed that 783 persons (18%) were helping another person due to that person's impaired health, 41.6% women, mean age for women 81.8 years (SD 4.96) and for men 81.7 years (SD 4.32). The postal questionnaire included SF-12, demographic data and questions about caregiving activities derived from Nolan's model, social network and contacts with health care. Adapting their activities to be prepared if something happened (52%), having regular contact to prevent problems (35%), helping in contacts with the hospital (57%), helping with instrumental activities of daily living (49%), personal activities of daily living (14%), medical care (11%) and helping to improve functions (14%) were the activities reported. Adapting own activities, regular contact, weak economy and needing instrumental help with daily living oneself predicted low MCS12. The importance of early involvement on the part of the caregivers was emphasized.     

Management of diabetes in patients at the end of life

Diabetes is a complex metabolic disorder that is more common in patients with cancer than in the general population. The ethical dilemmas facing many healthcare professionals in the management of diabetes during the terminal phase of life include the timing of withholding or withdrawing treatment. Communication can also be difficult between healthcare professionals, patients and their families at this time. If the patient's preferences have not been discussed at an earlier stage in the illness trajectory, mismanagement of diabetes may occur. Local protocols on diabetes management at the end of life have been developed in some areas, but there are no national or standardised guidelines. This can result in fragmented care. This article explores the need for better communication and the development of national guidelines so that the quality of end of life care for patients with diabetes can be improved.