'Ingredients' of a supportive web of caring relationships at the end of life: findings from a community research project in Austria.

In accordance with the pluralisation of life plans in late modernity, the societal organisation of care at the end of life is diverse. Although the public discourse in western societies is dominated by questions about optimising specialised palliative care services, public health approaches, which take into account the social determinants and inequalities in end-of-life care, have gained in importance over the last decade. Conceptual aspects, dimensions of impact and benefit for the dying and their communities are well discussed in the public health end-of-life care research literature. Our research focuses on the preconditions of a supportive caring web in order to understand how communities can build on their social capital to deal with existential uncertainty. As part of a large-scale community research project, we carried out focus groups and interviews with community members. Through dispositive analysis, we generated a set of care-web 'ingredients', which constitute and foster a caring community. These 'ingredients' need to be cultivated through an ongoing process of co-creation. This requires: (i) a focus on relationships and social systems; (ii) the creation of reflective spaces; and (iii) the strengthening of social capital, and d) the addressing of inequalities in care.

Caring communities as collective learning process: findings and lessons learned from a participatory research project in Austria.

BACKGROUND: By now, the public health end-of-life care approach is well established and has induced diverse initiatives-subsumed under the concept of compassionate or caring communities-to engage the community in supporting vulnerable, dying people and their beloved ones. In the light of a participatory research project our paper examines the question: what are the deeper ideas behind caring communities and what constitutes a caring community? METHODS: A multi-level analysis based on (I) qualitative research with focus groups and interviews with community members within the project; (II) the reflection of the role of participatory research in caring community initiatives, and (III) the meta-analysis of an international expert workshop, which allowed to discuss our experiences and insights in the light of international caring community models and expertise. RESULTS: Our analysis of qualities ("ingredients") of a caring community, from the perspective of community members, highlighted the importance of the co-creation of supportive care relationships in the local care web, through everyday life solidarity in the neighbourhood, appreciating and exchanging the wisdom of care, and also marked the role of professionals as enablers. Participatory research in caring community developments has the potential to engage and empower citizens, and to interlink existential care-stories with questions about the structural and political environments of appropriate end-of-life care. CONCLUSIONS: The caring community movement and public health end-of-life care has to maintain their critical potential against the commercialization and fragmentation of care (services), but also without "romanticizing" communities. Prospective caring community progresses need (I) an ecological health-promotion framework for action and (II) social learning processes along the existential experiences and the wisdom of community members, complementing each other. Organizing existential-political care dialogues can contribute to an ethic of caring in practice on a community level.

Palliative care culture in nursing homes: the relatives' perspective.

BACKGROUND: Nursing homes are confronted with a significant change in their client structure. Palliative care gains importance in caring for residents until the end of their life. Relatives play a crucial role in caring for older people in nursing homes, especially in palliative care. As the perspective of relatives on palliative care culture in nursing homes has not yet been studied extensively, research in this field still has an exploratory character. AIM: The aim of the paper is to highlight some of the most important insights into themes and issues that relatives of persons having died in a nursing home find essential, with a view to fostering a well-established palliative care culture. METHODS: Within a qualitative approach, four focus group interviews were conducted. FINDINGS: Findings indicate that good communication is a core element of a well-established palliative care culture. Direct contact with relatives, talking about death and dying and the opportunity to be involved in decision-making all support a good palliative care culture. The fact that residents have a diverse range of social backgrounds, for example, regarding ethnicity, gender and living with dementia, influences palliative care in nursing homes and has to be taken into account. CONCLUSIONS: To create a good palliative care culture, management has to support this approach, continuously develop appropriate structures and act in a competent way.

The Care Dialog: the "ethics of care" approach and its importance for clinical ethics consultation.

Ethics consultation in institutions of the healthcare system has been given a standard form based on three pillars: education, the development of guidelines and concrete ethics consultation in case conferences. The spread of ethics committees, which perform these tasks on an organizational level, is a remarkable historic achievement. At the same time it cannot be denied that modern ethics consultation neglects relevant aspects of care ethics approaches. In our essay we present an "ethics of care" approach as well as an empirical pilot project-"Ethics from the bottom up"-which organizes ethics consultation based on this focus. Findings and philosophy of the project will be discussed as far as relevant for ethics consultation in the healthcare system.

OA51†Caring community in living and dying - engaging communities through participatory research, an austrian case study.

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. REFERENCES: 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.

OA52†"ethics from the bottom up": promoting networks and participation through shared stories of care.

BACKGROUND: The "basic action" in creating compassionate communities is to create settings where people effectively have the opportunity to develop concerns and compassion for each other. The project "ethics from the bottom up" (in Bad Bentheim, Lower Saxony, Germany) brings together the relatives of old and dying people, professionals from healthcare organisations and people from other living and working contexts in order to share their sorrows and care experiences. AIM: Current methods and concepts of applied and organised ethical deliberation (or ethics "consultation") are not qualified and able to fulfil the requirements of ethical questions in the field of health promotion and health promoting palliative care. The predominant model of ethical deliberation in healthcare settings, the clinical ethics consultation, is designed for the specific orientation needs of curative medicine. The analogous step from medicine to health promotion, from professional palliative care to compassionate communities has not been carried out in ethics. By promoting a compassionate community through shared narratives of care and concern, a paradigmatic shift from clinical ethics to "communal" ethics is put into action. METHOD: Participatory action research design. Ethical approach based on narrative and care ethics. RESULTS: We observe a new and simple way to bring relatives into communication with each other and with professional and (specialised) health services and to discuss the fundamental questions of human life. This is one way of initiating the democratisation of care, of finding support in the challenges of weakness and dying. CONCLUSION: In contrast to a narrowing tendency in modern ethics/ethics consultation (focus on moral dilemmas and treatment decisions) the objective of ethical deliberation is not just a singular decision but the sustainable cultivation of collective practical wisdom in a web of meaningful relationships.