Academic journal article Health Sociology Review

Informal Caring Networks for People at End of Life: Building Social Capital in Australian Communities

Academic journal article Health Sociology Review

Informal Caring Networks for People at End of Life: Building Social Capital in Australian Communities

Article excerpt


In Australia, around 75% of all deaths follow a course of illness reasonably expected to end with death (Palliative Care Australia, 2005). Up to 90% of people with a terminal illness spend most of the final year of life at home (Palliative Care Australia, 2005) and most therefore will need some form of end of life care (EoLC). Family caregivers are essential to this EoLC and when supported by specialist palliative care, report better health outcomes (McNamara & Rosenwax, 2010; Palliative Care Australia, 2010; Thomas, Hudson, Oldham, Kelly & Trauer, 2010). Further, most Australians indicate a preference to die at home if they have an incurable, progressive illness; however, most will not (Palliative Care Australia, 2011).

The predictors of successful home care at the end of life (EoL) indicate that the presence of a carer from within the dying person's family or circle of close friends increases the likelihood of a home death occurring (Masucci, Guerriere, Cheng & Coyte, 2010). Yet in turn, these informal carers themselves identify complex support needs in order to succeed in this undertaking (Funk et al., 2010; Stajduhar et al., 2010). Though a substantial proportion of the published literature expresses these needs within the dominant health services paradigm, the role of informal networks in supporting the home-dwelling dying person and their carer is less well understood; moreover, the contribution informal caring networks make to building community social capital is under-attended in the published literature on EoLC. In our examination of the place of social capital and community development in the provision of end of life care at home, we considered the conceptual foundations evident in the health services dominance of EoLC and the emerging narrative regarding health promoting palliative care in the Australian context.

The nature of caring

Over the past ten years, a wide range of research has described the individual experiences and needs of carers and caring at home at the end of life (Donnelly, Michael & Donnelly, 2006; O'Brien & Jack, 2010; Thomas et al., 2010; Weibull, Olsen & Neergaard, 2008). There is now a large body of evidence documenting the burden on family members providing EoLC at home. The average length of community-based palliative care is 119 days, of which 117 days of care are typically provided by family, friends, neighbours and community members (Rumbold, 2010). The financial and human costs of such care are well documented (Access Economics, 2005; Australian Bureau of Statistics, 2012). Research describes both carers' and patients' risk-factors and the 'optimal' kind of services required to support caregivers and people with terminal illnesses when they are cared for at home (Foreman, Hunt, Luke & Roder, 2006; Hudson, 2003; Palliative Care Australia, 2005; Tang, 2003; Zapart, Kenny, Hall, Servis & Wiley, 2007). The consequences for carers of providing EoLC include adverse physical, social and psychological effects with stress, poor mental health, sleep disruption, fatigue, family and social isolation all noted as significant burdens (Grande et al., 2009; Zapart et al., 2007). The physical and psychological demands of the caring role itself can lead to adverse health and social outcomes for carers; the Australian Institute of Health and Welfare (2008) reported that older carers were more likely than their non-carer peers to have a disability (61% to 51%) and although a third felt satisfied with their caring role, a similar proportion frequently felt fatigue and weariness.

However, it is also recognised that caring provides personal rewards as well as burdens (Zapart et al., 2007). Carers report considerable satisfaction and benefits from caring for terminally ill people (Grande et al., 2009; Hudson 2003; Zapart et al., 2007). Currow et al. (2011) found that 75% of people who have cared for someone who is dying would indeed do it again; this finding was stable across all age groups. …

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