This ethnographic study examined the social context of home-based palliative caregiving. Data were composed of observation field notes, interviews, and textual documents, and were analyzed using constant comparative methods. Findings show that home-based palliative caregiving resulted in life-enriching experiences for many caregivers. However, assumptions about dying at home and health care reforms resulted in some caregivers feeling “pressured” to provide home care, and consequently, left them feeling their obligations to care were exploited by the health care system. Shifts toward providing care closer to home not only changed caregivers, but also changed the home setting where palliative care was provided. Findings indicate a need for interventions designed to improve support for caregivers at home, and to explore how assumptions influence and sometimes drive the provision of home health care.

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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This study explored the day-to-day experiences of family members providing care at home for their dying loved one with HIV/AIDS. In-depth interviews with seven caregivers were analyzed using grounded theory qualitative methods. A conceptualization of the family caregiving experience portrays HIV/AIDS caregiving as an intense, emotional, and powerful experience filled with pride and enrichment, and conversely, with anger and disillusionment. Findings reflected a significant need for interventions designed to provide direct and effective support for family members caring for a loved one with HIV/AIDS.

Families of patients are well poised to comment on the end-of-life (EOL) care received by those patients and can provide feedback to care providers and decision makers. To better understand family-member evaluations of the quality of in-patient EOL care, this study draws on qualitative interview data (n=24) to identify core aspects of EOL care that are important for family members. Based on this analysis, a conceptual framework of family members’ assessments of their experiences with EOL health care services is developed. Findings suggest the need to distinguish between perceived substantive or tangible features of received care, interpretations of the causes and symbolic meanings of that care, and personal and affective outcomes. Practitioners are encouraged to reflect on how behaviours and communications may be interpreted by families. Attention also needs to be given to the changes in practice and organizational decision making that can facilitate more positive experiences for families and patients.

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Alarming differences exist in cancer outcomes for people most impacted by persistent and widening health and social inequities. People who are socially disadvantaged often have higher cancer-related mortality and are diagnosed with advanced cancers more often than other people. Such outcomes are linked to the compounding effects of stigma, discrimination, and other barriers, which create persistent inequities in access to care at all points in the cancer trajectory, preventing timely diagnosis and treatment, and further widening the health equity gap. In this commentary, we discuss how growing evidence suggests that people who are considered marginalized are not well-served by the cancer care sector and how the design and structure of services can often impose profound barriers to populations considered socially disadvantaged. We highlight equity-oriented healthcare as one strategy that can begin to address inequities in health outcomes and access to care by taking action to transform organizational cultures and approaches to the design and delivery of cancer services.