Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

Abstract

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.

Caring and Grieving in the Context of Social and Structural Inequity: Experiences of Australian Carers With Social Welfare Needs

“…It was anticipated that the insights of former carers may inform future advocacy regarding policy related to end-of-life caring and bereavement. Findings related to experiences of palliative care and welfare workers within the same region have been reported elsewhere (Bindley et al, 2020, 2021). In this article, we argue that the intersection of certain social locations and features of the welfare state shaped the exposure of carers of people with life-limiting illness to inequity and disadvantageous outcomes, while caring and in bereavement.…”

“…Practice implications arise for those working with carers within public welfare systems, as well as in end-of-life and palliative care. The potential for welfare policy and processes to contribute to ‘structural burden’ or stress related to the negotiation of complicated and fragmented systems (Funk et al, 2019) was evident, and has been associated with intersecting social locations related to age, literacy, language and pre-existing financial strain (Bindley et al, 2020, 2021). While the need for approaches to the education of health professionals focussed on the social determinants of health has been recognised (Sutherland et al, 2016), this emphasis is also necessary within the welfare sector.…”

Dying at home for people experiencing financial hardship and deprivation: How health and social care professionals recognise and reflect on patients’ circumstances

“…perceive social needs related to income support and housing as an essential component(s) of palliative care'. 23 This is in line with recognising 'financial pain' as contributing to 'total pain', the alleviation of which lies at the centre of palliative care philosophy. 24 However, the extent to which this translates from policy and underlying philosophy to practice remains unclear, particularly in relation to supporting home dying.…”

Bureaucracy and burden: An Intersectionality-Based Policy Analysis of social welfare policy with consequences for carers of people with life-limiting illness

“…Data analysis: Interview data were initially analysed using the framework approach, 34 with findings reported elsewhere. [35][36][37] The IBPA framework (Table 1) 23,25 is designed to reveal critical information for future policy and practice priorities, and was chosen as an analytic framework to undertake further analysis and synthesis of findings. Given the majority of social determinants of health are shaped by policies beyond the healthcare sector, 38 this approach is fitting for analysis of findings pertaining to welfare policy.…”