Developing compassionate communities in Australia through collective caregiving: a qualitative study exploring network-centred care and the role of the end of life sector.

BACKGROUND: The new public health palliative care movement calls for a move away from an individualised model of caregiving to a whole of community approach which will increase expectations on community carers. In order to avoid carer isolation, exploitation and potential burnout there is then a very real need to understand environments and relationships which support collective community caregiving. In this research we explored in-home caring networks to understand if and how network centred care supports carers of the dying while developing a whole of community approach.
METHODS: Over a 6-year period the research team spoke to 301 caregivers, service providers and community members via interviews and focus groups in regional, rural and urban Australia.
RESULTS: People are already caring for their dying at home and doing it well provided they are comprehensively supported by networks of care. Being part of a caring network provided people with a sense of achievement and developed their death literacy which flowed into a myriad of other community activities. While caring networks are essential they are not widely supported by service providers. At worst, services are obstructive of peoples stated preferences for place of death and caring and often adopt a paternalistic approach. Place of care, in this case the home, was supportive of maintaining networks and peoples' wellbeing.
CONCLUSIONS: Operationalising public health approaches to palliative care requires moving to a place-based network centred model of care comprising formal and informal carers. Service systems need re-orienting to place caring networks as central to the caregiving process. This can be achieved by putting systems in place which initiate and maintain such networks and enable service providers to work with informal networks as equal and respectful partners.