Abstract
BackgroundLower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.MethodsSemi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.ResultsParticipants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.ConclusionNetworks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.
Highlights
Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing
The study took place in 2011–2012 in a lower socioeconomic area in Western Sydney, Australia, and is located within a larger local government area with a population of just over 300,000 [21]. This is part of a larger study which explored the end of life care needs and capacities of a lower socioeconomic palliative care population
The Index of Relative Disadvantage (IRSD) of the study recruitment area score is 885, with low scores representative of disadvantage in income, employment, material and social resources and the capacity to participate in society [23]
Summary
Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Lower socioeconomic groups are more likely than other socioeconomic groups, to require management of advanced disease [1]; have more complex social and economic needs [2,3]; have more limited awareness and understanding of the principles and practice of palliative care [4]; and were less likely to have a home death [5,6] These factors indicate different demands and access outcomes for end-of-life care, an often neglected life stage in research on this population [2,3,7,8]. The nature of networks and relations to buffer the drain on resources is understood [9] and important as the health and wellbeing of all individuals and communities is dependent on the nature of their social milieu [10]
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