“We are all in this together”: Building capacity for a community-centred approach to caring, dying and grieving in Australia

Abstract

Background, aims and objectives: Compassionate Communities is emerging as an international strategy for implementing the public health palliative care approach to end-of-life. It is a community-centred approach which places people and their naturally occurring networks at the centre of care, death and grief, thus extending the concept of person-centred care to network-centred care. In this article describe the first steps in the development of a Compassionate Community in the South West of Western Australia (2018). The aim of this initiative was to create opportunities for conversations around death, dying and loss; identify naturally occurring community connectors and hubs within the community and to foster a Compassionate Communities model of end-of-life care for practical and social support.Methods: To facilitate a ‘positive’ conversation, a format of a Mini Death Festival was undertaken to engage the broader community and to launch the South West Compassionate Communities Network. Attendees were invited to participate in a brief on-line survey describing their experiences with the event.Results: Over 100 people attended and 43 people registered on the day to be part of the Network. Response rate for the on-line survey was 63%. Feedback was overwhelmingly positive. The qualitative analysis generated 6 themes describing the benefits that participants reported, from cherishing the feeling of being connected, to building relationships through conversations, to learning and creative engagement through to feeling in a position to take action.Conclusions: The death festival enabled the South West Compassionate Communities Network to identify and develop an extended network of people who see themselves as part of a shared community of interest and who have an understanding of each other’s skills and talents. These individuals are vital assets in furthering the Compassionate Communities work and potential resources the Network can actively partner with to co-design the way forward. This is one example of an emergent evidence-base for how Compassionate Communities can be operationalised in the Australian context.

The impact of bereavement support on wellbeing: a comparative study between Australia and Ireland

“…Community initiatives, like compassionate community projects, enhance the natural supporters of grief through improving perceptions of and attitudes towards death, dying and bereavement, and harnessing the informal resources inherent in communities. 35 – 37 …”

“…Community initiatives, like compassionate community projects, enhance the natural supporters of grief through improving perceptions of and attitudes towards death, dying and bereavement, and harnessing the informal resources inherent in communities. [35][36][37] What is interesting is that, despite the different recruitment methodologies in the two studies and by consequence the different age distribution of the bereaved and their relationship to the deceased, the impact of the perceived insufficiency of support on health deterioration is very similar, just slightly higher in Ireland where the cohort with very recent bereavement in the last 6 months was included in the analysis (39% of total). The majority of the bereaved in Ireland were other relative and friend (total 63%) and the age is stratified to have equal proportions in each age group and hence only 29% were 55 years and over.…”

The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups

“…The issues identified by the non-cancer group in all domains of needs warrant more attention for development of more tailored and coordinated models of care, including the support from the non-government sector. This may also involve partnerships with the community to boost the support of the informal networks for example, through a Compassionate Communities Model of end-of-life care, 29 which harnesses the informal resources inherent in communities. 30…”

The Compassionate Communities Connectors model for end-of-life care: a community and health service partnership in Western Australia

“…The SWCCN was established in August 2018 and aims to create opportunities for conversations around death, dying and loss; to identify naturally occurring community connectors and hubs within the community; and to foster a Compassionate Communities model of end-of-life care for practical and social support. 13…”

“…August 2018 and aims to create opportunities for conversations around death, dying and loss; to identify naturally occurring community connectors and hubs within the community; and to foster a Compassionate Communities model of end-of-life care for practical and social support 13. ParticipantsThe study will involve four groups: patients, their family carers, the Connectors and Caring Helpers.Connectors.…”