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“We are all in this together”: Building capacity for a community-centred approach to caring, dying and grieving in Australia

Julieanne Hilbers, Holly Rankin-Smith, Debbie Horsfall, Samar M Aoun


Background, aims and objectives: Compassionate Communities is emerging as an international strategy for implementing the public health palliative care approach to end-of-life. It is a community-centred approach which places people and their naturally occurring networks at the centre of care, death and grief, thus extending the concept of person-centred care to network-centred care. In this article describe the first steps in the development of a Compassionate Community in the South West of Western Australia (2018). The aim of this initiative was to create opportunities for conversations around death, dying and loss; identify naturally occurring community connectors and hubs within the community and to foster a Compassionate Communities model of end-of-life care for practical and social support.

Methods: To facilitate a ‘positive’ conversation, a format of a Mini Death Festival was undertaken to engage the broader community and to launch the South West Compassionate Communities Network. Attendees were invited to participate in a brief on-line survey describing their experiences with the event.

Results: Over 100 people attended and 43 people registered on the day to be part of the Network. Response rate for the on-line survey was 63%. Feedback was overwhelmingly positive. The qualitative analysis generated 6 themes describing the benefits that participants reported, from cherishing the feeling of being connected, to building relationships through conversations, to learning and creative engagement through to feeling in a position to take action.

Conclusions: The death festival enabled the South West Compassionate Communities Network to identify and develop an extended network of people who see themselves as part of a shared community of interest and who have an understanding of each other’s skills and talents. These individuals are vital assets in furthering the Compassionate Communities work and potential resources the Network can actively partner with to co-design the way forward. This is one example of an emergent evidence-base for how Compassionate Communities can be operationalised in the Australian context.


Bereavement support, capacity building, compassionate communities, community-centred care, community development, cost-effectiveness, economic implications, end-of-life care, family carers, informal networks, person-centered healthcare, public health pall

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