Background The development in hospice and palliative care in German-speaking Europe is focused on improving professional practice and specialised palliative care services. The project was developed to foster the paradigmatic shift from professional – and institution – centred end-of-life care to community-based approaches in current end-of-life care in Austria.
Aim The project aims to strengthen networks and solidarity in end-of-life care, moreover to foster self-help resources of older people and family caregivers. Local initiatives and projects in diverse community contexts should be developed and supported. The process should raise awareness within the local population about existential questions concerning vulnerability, frailty, dying, death, loss and grief.
Method The project follows a multi-level participatory research (Minkler, Wallerstein 2003) and community development (Kellehear 2005) approach. Phase 1: Describing, analysing and appreciating local care culture. Phase 2: Strengthening local networks and self-help resources. Phase 3: Supporting implementation and sustainability.
Results The participatory research process was based on the dense narratives, micro-stories and care actions of people concerned in order to put these in relation to, and expand it with the different perspectives of the “circles of care” (Abel et al . 2013). Thus existential and care experiences were shared and common knowledge of local care cultures and resources was generated.
Minkler M, Wallerstein N, eds. Community based participatory research for health. San Francisco: Jossey-Bass, 2003.
Kellehear, A. Compassionate cities. London: Routledge, 2005.
Abel J, Walter T, Carey L, Rosenberg J, Noonan K, Horsfall D, Leonard R, Rumbold B, Morris D. Circles of care: should community development redefine the practice of palliative care? BMJ Support Palliat Care 2013:3:383–388.
Conclusion The stakeholders succeeded in building relationships of trust and in forming “care culture working groups” in various spheres of the community. As this is an ongoing project the challenges of social and cultural sustainability should be discussed in order to get the citizens involved to an even greater extent in gaining ‘ownership’ of and control over the caring community as an ongoing cultural process offering solidarity and compassion in living and dying.
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