CHAIR: Kenneth Chambaere
a. Narratives from the field: Using photo-voice to document, explore and advocate for compassionate community work
Prof. Debbie Horsfall
In mid 2018 The GroundSwell Project, initiated two projects to further the emergent international approach to end-of-life community-centred care: one was The Blue Mountains Compassionate Communities project, a partnership with the Nepean Blue Mountains Primary Health Network, to create a more connected end of life network of care in the upper Blue Mountains; and the second was the National Compassionate Communities Practice Forum, where over thirty communities from across Australia applied to be part of the initiative with eight being finally selected. Each of these eight communities nominated two representatives to be community, or citizen, researchers facilitated and mentored by researchers from the caring at end of life team at Western Sydney University. Additionally, each month the community development leader of the forum met with the researchers to critically reflect upon, and analyse, the work being done. The resulting research group, together with the community lead of the Blue Mountains project, were encouraged to use photo-voice data as a way to document, analyse and discuss their work within their communities, in both research meetings and in critical reflections. We found that photo elicited and supported conversations enabled a rich account of peoples lived experiences in implementing compassionate communities. The photos anchored the exploration of their thoughts and conversations became less cerebral as group members became emboldened to speak from their hearts. Nuances of their day to day learning’s became tangible through the metaphor of the image which also offered the group an opportunity to honour their progress so far. Photo-voice offered a platform for critical thinking to be tentatively and generously shared and explored amongst the group simultaneously strengthening alliances. Furthermore, we found that this arts-based method of data collecting instinctively complimented the themes of relationship, connection and community development which were central to the building of these compassionate communities.
b. Towards stringent research in health promoting palliative care: Presentation of the Flanders Project to develop capacity in palliative care across society (CAPACITY project)
Background and aims: There is growing awareness that it will not suffice to solely engage more professional caregivers in order to address the future challenges of palliative care. A broad capacity-development in palliative care across society, outside traditional health care services, offers a promising complementary paradigm. CAPACITY is a 2.7 million euro funded research project aiming at developing and evaluating innovative interventions for broad capacity-development around palliative care by better using the existing capacity and potential. Aim of the presentation: This presentation aims to provide a brief overview of the different studies of CAPACITY and their desired societal impact. Additionally, interactions with the public will take place to discuss and learn from their approaches, methods, challenges, etc. Approach and results: The aim of understanding and enhancing assets of individuals, communities and organizations who have the potential to improve the experience of living with and dying from a serious illness is addressed by 6 studies focusing on broad capacity-development in: *Individuals: Study 1 will develop and evaluate an advance care planning tool for people with dementia and their informal carers; Study 2 will develop and evaluate an eHealth application to develop palliative care capacity in people with advanced cancer and their family carers; *Communities: Study 3 and 4 will create and evaluate a compassionate city and a local volunteer model within the compassionate city; *Social care organizations: Study 5 will develop and evaluate a program to increase professional social care capacity in palliative care; *Broader society: Study 6 will develop a public awareness campaign to promote public understanding of palliative care and its benefits. Conclusions and application to PHPC: CAPACITY will add an evidence-base to Public Health and Palliative Care, including Health Promoting Palliative Care. Additionally, new evidence-based models will be developed, aimed at removing taboos and strengthening knowledge and competences around palliative care.
c. Compassion in contemporary society
Dr Bruce Rumbold
Context In recent years, catalysed by public exposure of failures in care and neglect, health systems around the world have renewed an undertaking to provide compassionate care. While the value of compassion receives a warm reception at local community level, as demonstrated in the compassionate communities movement, introducing compassion into the formal practices of social institutions such as healthcare systems is less than straightforward. The policies that direct our social institutions are strongly influenced by globalised neoliberal economic policies characterised by individualism, competition, and greed. Yet for compassion to continue to thrive at the local level we need to develop compassionate social policies supporting interdependence within communities and between nations. For the compassionate communities movement, this requires an intentional and robust partnership between end of life care projects and social movements for equity and justice. Aim This presentation argues that an adequate understanding of compassion has profound implications not only for everyday behaviour of health practitioners but for reforming health systems and also for transforming the societies they serve. Application to PHPC It suggests that the public health resources we need to draw upon are not only the Ottawa Charter and Healthy Settings models embedded in Public Health Palliative Care, but also the more recent social determinants approaches confronting social forces that undermine the views of community represented in these foundational models. The presentation will explore how ideas about social justice, and inclusive equality, are required if a compassionate communities approach is to become socially and ecologically transformative.