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"Caring Communities and Caring Institutions need one another"

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University of Bradford

Richmond Road

WB23

Bradford

BD7 1DP

United Kingdom

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The role of Participatory Action Research (PAR) in strengthening the culture of care at the end of life: Reflections on Austrian experiences

Abstract

Frail and vulnerable people at the end of their lives deserve to live in respectful communities and be looked after by dignified organisations. A compassionate approach to end-of-life care acknowledges loss and suffering, offers support to those who are dying and to those facing grief and loss as death approaches. Compassionate end-of-life care acknowledges that the end of life is everyone’s responsibility (Kellehear, 2005). Under this civic model, end-of-life care takes place in the context of everyday relationships and interactions in the community. However, due to the fact that we are living in an organizational society (Etzioni, 1961), we equally need to establish a dignified culture of dying within organisations.

In compassionate end-of-life care, dying, death and loss is not delegated to our health and social care organizations, nor is the responsibility pushed back into the private sphere (primarily women carers). We have to create new, or transform old forms of solidarity and compassion in the ‘third social space’ (Dörner, 2007) - between private households and institutionally provided care. Such an approach relocates care in the neighbourhood, in the district, in the diverse living spheres of communities.

The political philosopher and care ethicist Joan Tronto (2013) suggests that a caring society and a “caring democracy” require settings where people can learn from and about the lives of others. To this end, spaces in organizations and communities need to be created where people will have the opportunity to reflect and share existential experiences, their practical care insights, and consider what is important to them. This need is even more important during critical phases of their lives, in the face of illness, vulnerability, dying, death and loss. Participatory Action Research (PAR) can make an important contribution to this.

This workshop will introduce the role of PAR in strengthening a dignified culture of dying in organizations (organizational development), within a wider public health framework promoting Compassionate Communities (community development). Drawing upon insights from different PAR projects in Germany and Austria we will:

a) Discuss with participants about their personal experiences and points of reference;

b) Identify and analyse underlying contradictions and challenges; and

c) Reflect upon potential implications and conditions need to promote social change in organizations and strengthen compassion in our communities.

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University of Bradford

Richmond Road

WB23

Bradford

BD7 1DP

United Kingdom

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