Next of kin?s experience of powerlessness and helplessness in palliative home care

Milberg, Anna; Strang, Peter; Jakobsson, Maria

doi:10.1007/s00520-003-0569-y

Cited by 86 publications

(106 citation statements)

References 64 publications

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“…Although positive changes such as caregiver's self acceptance, meaning, and closure have been reported, these have been minimal (Hudson, et al, 2004;Milberg, et al, 2004;Winterling, et al, 2004).…”

Section: Introductionmentioning

confidence: 99%

Quality of life of community-based palliative care clients and their caregivers

Connell

Fernandez²,

Tran

et al. 2012

Pall Supp Care

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Agar, M. (2013). Quality of life of community-based palliative care clients and their caregivers. Palliative and Supportive Care, 11 (4), 323-330. Quality of life of community-based palliative care clients and their caregivers AbstractThis study aimed to investigate health-related quality of life of palliative care (PC) clients and their caregivers, at baseline and follow-up, following a referral to a community PC service. Quality of life of clients and their caregivers was respectively measured using the McGill Quality of Life instrument (MQoL) and the Caregiver Quality of Life Cancer Index (CQoLC) instruments. Participants were recruited from June 8 to October 27, 2006. This study was undertaken in one zone of an Area Health Service in New South Wales, which has a diverse socioeconomic population. The zone covers an area of 6237 km2 and is divided into five sectors, each with a PC service, all of which participated in this study. Data were obtained from 49 clients and 43 caregivers at baseline, and 22 clients and 12 caregivers at 8 week follow-up. Twenty-one participants died and six moved out of the area during the study. At baseline, clients reported a low mean score for physical symptoms (3.3 ± 1.9) and a high score for support (8.7 ± 1.0). Caregivers scored a total CQoLC of 63.9 ± 21.4 and clients had a total QOL of 6.1 ± 1.3. At follow up, matched data for 22 clients and 13 caregivers demonstrated no statistical differences in quality of life. This study has provided evidence that health-related quality of life questionnaires show lower scores for physical health and higher scores for support, which can directly inform specific interventions targeted at the physical and support domains. ABSTRACTObjective: This study aimed to investigate health-related quality of life of palliative care (PC) clients and their caregivers, at baseline and follow-up, following a referral to a community PC service.Method: Quality of life of clients and their caregivers was respectively measured using the McGill Quality of Life instrument (MQoL) and the Caregiver Quality of Life Cancer Index (CQoLC) instruments. Participants were recruited from June 8 to October 27, 2006. This study was undertaken in one zone of an Area Health Service in New South Wales, which has a diverse socioeconomic population. The zone covers an area of 6237 km 2 and is divided into five sectors, each with a PC service, all of which participated in this study.Results: Data were obtained from 49 clients and 43 caregivers at baseline, and 22 clients and 12 caregivers at 8 week follow-up. Twenty-one participants died and six moved out of the area during the study. At baseline, clients reported a low mean score for physical symptoms (3.3 + 1.9) and a high score for support (8.7 + 1.0). Caregivers scored a total CQoLC of 63.9 + 21.4 and clients had a total QOL of 6.1 + 1.3. At follow up, matched data for 22 clients and 13 caregivers demonstrated no statistical differences in quality of life.Significance of results: This study has provided evidence that hea...

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Section: Introductionmentioning

confidence: 99%

Quality of life of community-based palliative care clients and their caregivers

Connell

Fernandez²,

Tran

et al. 2012

Pall Supp Care

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“…Within the palliative care literature, the experience of caregiving has been described as fundamentally uncertain, in part because of the unpredictability of the trajectory [23,24]. There is a sense of a disruption in 'normal life' [9,25], and experiences of helplessness and vulnerability are commonly noted [26,27]. Care demands can be particularly onerous towards the end of life, and emotional stresses can be particularly high as family members grieve successive losses, have vivid awareness of impending death and face an uncertain future.…”

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confidence: 99%

Burdens of Family Caregiving at the End of Life

Stajduhar¹

2013

CIM

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A patient's ability to be cared for and to die at home is heavily dependent upon the e orts of family caregivers. Considerable stresses are associated with such caregiving, including physical, psychosocial and nancial burdens. Research has shown that unmet needs and dissatisfaction with care can lead to negative outcomes for caregivers. While many family caregivers also report caregiving as life-enriching, some report that they would prefer alternatives to care at home, primarily because of these associated burdens. Little is known about which interventions are most e ective to support family caregivers ministering palliative care at home. Well-designed studies to test promising interventions are needed, followed by studies of the best ways to implement the most e ective interventions. Clinically e ective practice support tools in palliative home care are warranted to identify family caregiver needs and to ensure that patients and their family caregivers have a choice about where care is provided. The aging population, the growing number of Canadians diagnosed with chronic life-limiting illness, and the fact that a large majority of Canadians report that they prefer to spend their nal days at home [1,2,3] are converging to prompt government policy to press for more and better care of dying people in the community [4]. Patients' ability to be cared for and to die at home, however, is heavily dependent upon the e orts of family caregivers [5]. Even where patients receive home care services, the likelihood of dying at home is dramatically reduced if family caregivers are unable to provide care [6]. SPECIAL SERIES -END OF LIFE CAREAbout 80% of all care at home is provided by family caregivers [7]. Recent estimates suggest that Canada's 1.5 to 2 million family caregivers provide $25 to $26 billion worth of care annually and incur $80 million in out-of-pocket expenses annually [8]. Not only are family caregivers the 'invisible' providers within our health care system in Canada, but they have emerged as the principle source of support for patients who are dying at home.ough normally willingly undertaken [9], caregiving at the end of life entails considerable cost for family caregivers and the wider family, incurring emotional, social, physical and nancial costs [10,11]. e toll of care extends even into bereavement; people who are at least somewhat distressed by caregiving are 63% more likely to die in the four years following the patient's death than those who were not distressed or than the bereaved who did not give care [12]. Indeed, the Public Health Agency of Canada identi es the issue of 'seniors caring for seniors' as a public health concern in need of attention.Canada's Family Caregivers: Who Are ey? e vast majority of family caregivers in Canada are female (77%); about 70% are 45 years of age or older and about 25% are at least 65 years of age. us, women aged 45 and older comprise 51% of Canada's family caregiver population [13]. Consistent with these characteristics, Canada's family caregivers are most...

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“…Caregivers have previously reported inadequate knowledge [41] particularly related to pain management, navigating an uncoordinated home care system, no hands-on learning, and not knowing what to expect as an illness progresses [42]. This lack of knowledge may well be a contributing factor to the feelings of powerlessness and helplessness that caregivers described when providing palliative care [43] or the feeling of loss of control [44,45].…”

Section: Discussionmentioning

confidence: 99%

Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

et al. 2015

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Background: Palliative care clients with complex needs are increasingly choosing to remain at home for their care. Home represents familiarity, presence of supportive family and friends, potential for normalcy and, a safe haven. The palliative care literature although robust is hardly ever linked with safety and home care. Patient safety has been focused predominantly on institutions without a corresponding level of research or safety initiatives in the home care sector. Although a growing body of research has begun to highlight the complexity and multidimensionality of home care safety there is a dearth of understanding of safety issues from the perspectives of clients, caregivers, and paid providers who are responsible for managing and coordinating palliative home care. The aim of this study was to describe the experiences, challenges, and insights regarding safety for adults receiving and providing palliative home care services. Methods: Mixed method design was used to capture the multiple meanings and influences on the broadened conceptualization of home care safety including emotional, social, and functional safety. There were three types of participants in this multi-site study namely palliative home care clients, caregivers, and paid providers. Individual interviews (n = 33) were conducted in the client's home followed by a photo "walkabout" to describe their daily experiences and routines. Focus groups, three with experienced professionals (n = 25) and two with home support workers (n = 11) were also conducted. Results: This study supports the broadened conceptualization of home care safety namely that: the safety of the client and caregiver are inextricably linked; the home is an unregulated and uncontrolled site for providing palliative home care in contrast to hospitals or other institutional settings; and clients and caregivers have the autonomy to live and take risks in their own home. Conclusion: To ensure quality in palliative home care and to mitigate safety risks the client and caregiver(s) should be considered as the unit of care; caregivers need to be better prepared and trained to manage the complexity of issues; and regular assessments are imperative to monitor and detect changes in the unit of care and their changing needs while respecting their autonomy to make less than safe choices.

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Next of kin?s experience of powerlessness and helplessness in palliative home care

Abstract: The main findings provide tools for the practitioner to identify situations contributing to next of kin's sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans' search for action.

Cited by 86 publications

References 64 publications

Quality of life of community-based palliative care clients and their caregivers

Quality of life of community-based palliative care clients and their caregivers

Burdens of Family Caregiving at the End of Life

Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

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