Researchers from Western Sydney University in partnership with The GroundSwell Project, have released a new report, Researching Compassionate Communities in Australia: a short-term longitudinal study, which is the first comprehensive assessment of community-centred end of life care in Australia.
The University’s Caring at End of Life research team, led by Professor Debbie Horsfall, documented the experiences of people from nine Compassionate Community projects across Australia over a two-year period, highlighting the challenges and benefits of this model of care.
“Compassionate Communities are a relatively new way of providing palliative care. Through a social network, responsibilities are divided to ensure people with life-threatening or life-limiting conditions receive the care they want and need,” said Professor Horsfall.
“The report documented the barriers that exist to delivering this type of care, and the strategies being employed to overcome them. By utilising the knowledge of these communities, and insights from the international community, we can better support and develop Compassionate Communities in Australia.”
Following focus groups and interviews with key stakeholders, the comprehensive report made several recommendations. These include:
● Develop an easy-to-use process of documentation for workers in this field to provide evidence of lived experiences, using stories and narratives as evidence.
● Develop resources that showcase diverse examples of how the work can be done.
● Support and expect a ‘whole of community’ response and re-presentation.
● Develop and model collective and dispersed leadership.
An urgent need for funding was also identified to provide structured support and practitioner-focused resources. The report also suggests that communities who are well placed to develop Compassionate Communities receive support as a priority.
The groups assessed in the report were supported by The GroundSwell Project — an organisation working to improve how people in Australia die, care and grieve.
According to Holly Rankin-Smith, Communications Director at The GroundSwell Project, leaders of the movement at all levels need to strongly advocate for community and civic-centric evidence, leadership, and knowledge exchange.
“Strategies need to be developed which both support and expect a more diverse response across all levels of the community, from local meetings, to leaders and peak bodies in the field,” said Ms Rankin-Smith.
“The emerging movement will be more inclusive and coherent if Compassionate Communities are co-defined and designed with the community themselves.”
“In one of the communities, relationships between the community, palliative care and the funeral industry were being built as all these groups literally met around a table to see what they could do better.”