Dying in the margins : understanding the needs and capacities of a lower socioeconomic population for end of life care

University of Technology, Sydney. Faculty of Health.Increased disease burden and unmet health care needs are defining features of lower socioeconomic groups, both in Australia and internationally. In Australia, there is limited understanding of the needs of lower socioeconomic groups for end of life care. At the end-of-life, health disparities are often more pronounced for both patients and their caregivers. Globally, there has been scant attention on the needs of individuals from socially and economically disadvantaged groups at the end-of-life. As gaps between the rich and poor widen and the emphasis on community-based care increases, this research area is of growing significance. The research objectives of this study were to (i) provide a snapshot of the impact of socioeconomic status on place of death and after-hours crisis service utilisation by comparing outcomes of areas of high and low disadvantage; (ii) explore and describe the socioeconomic demographics, needs, capacities and experiences of patients and/or carers from a disadvantaged area focussing on (ii a) the social, economic and care outcomes and capacities at individual, community and government levels, (ii b) the nature and impact of social capital outcomes, (ii c) the experience of access for a specialist palliative care service; and (iii) describe the appropriateness, acceptability, and feasibility of self-report tools for capturing wellbeing, consumption, health literacy, social capital and palliative care needs and capacities in this population. This study used a concurrent embedded mixed method design with a qualitative emphasis and explicit use of social determinants of health framework and social capital concepts. The conceptual framework determined selection of self-report tools which additionally structured interviews. Integration of the quantitative and qualitative data was achieved through the study design, data collection and discussion. Four years of administrative data from a single palliative care service, located in a socioeconomically disadvantaged area was collected and analysed. Place of death and after-hours crisis service data were compared for a most and a least disadvantaged area compared over a twelve month period. Semi-structured interviews were conducted with 14 patients and/or carers from a lower socioeconomic area and five key informants who provided formal care for this group. Demographic data and outcomes of self-report tools were collected from patient and carer participants during interviews. Semi-structured interview responses to self-report tools were evaluated for appropriateness, acceptability and feasibility of these measures. The findings demonstrate that a lower socioeconomic group experienced end of life care within margins of social and economic resources and care networks. Social margins were shaped by limited community trust, engagement and deficiencies in social policy (public housing). Economic margins reflected income loss, healthcare spending on co-payments and economic disparity in aged care facility access. Care network margins were defined by limited informal and formal care support. Patients from the disadvantaged area had fewer home deaths and greater home care needs warranting facility admission. Capacities within the end of life care experience were demonstrated by trust and engagement with government organisations, potential for community club, neighbourhood and friendship support, access to financial support programs and benefits, and examples of supported home care networks. Recommendations for research, clinical practice and policy to address these issues are discussed. This thesis has provided a unique and novel contribution to the literature. Specifically, it has demonstrated the needs and capacities for a lower socioeconomic group not previously described in the Australian literature, and in particular, it has advanced conceptual and theoretical issues in investigating social and economic issues in end-of-life care