No abstract

Background: Care and death at home are generally thought to be beneficial for families. However, there may be bereavement experiences and support needs, which are specific to family caregivers providing end-of-life care in their home. The Palliative Care Home Support Program in New South Wales, Australia, provides end-of-life care packages for patients who wish to die at home. These packages provide up to 48 hours of specialized supportive palliative home-based care, day or night, by community workers specifically trained for the task, working as part of existing community palliative care multidisciplinary teams. Care packages may include assistance with personal hygiene, carer respite, and domestic assistance. Methods: As part of a larger longitudinal mixedmethods study, 28 bereaved caregivers who experienced a home death and/or received the care packages undertook in-depth interviews. Narrative thematic analysis was undertaken to explore their experiences at 6 months post death. Results: Twenty-eight caregivers were experienced or planned for a home death and 21 had a package in place. Five themes were identified: "the achievements of a home death"; "taking on the mantle"; "the burden of witnessing the dying process"; "home as our space/their space"; and "resistance or submission to the ideals of best place of care for family caregivers." Conclusions: Bereaved caregivers provided accounts of their interactions with health care providers depicting a complex relationship with the care system. Some families struggled to manage boundaries of home and private space as care needs escalated. Ideals about best care and home death are sometimes conflicted, without easy consensus between patient, family, and service providers. Significance: Models of care based on assumptions that home death is straightforwardly beneficial may cause unintended consequences. For future policy, providing care in the private space of the home requires close attention to family concerns and outcomes.

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness.