‘Developing and growing communities of care in Tasmania’
Palliative Care Tasmania (PCT) partnered with the University of Tasmania to produce a research paper aimed to identify strategies to grow and support sustainable ‘communities of care’ amongst the current palliative care workforce (paid and unpaid) in Tasmania.
The project had four objectives:
- Conduct a rapid review of the literature targeted at identifying existing models of communities of care and strategies that have been used to support their development.
- Explore knowledge, attitudes and perceptions about end of life and palliative care amongst the palliative care workforce in Tasmania.
- Gather feedback from the palliative workforce about their contributions, knowledge, attitudes and perceptions towards the development of sustainable communities of care in Tasmania.
- Identify actionable strategies that can support the palliative care workforce development and build communities of care.
The delivery of palliative care relies on both informal and social care networks as well as formal service providers. Therefore, the development of robust systems that support high quality, accessible and responsive palliative care is essential for the wellbeing of people living with a life limiting illness and their family/carer(s).
- Online Survery – 148 respondents
- Workshops – 11 participants attended (across three)
- In-depth Interviews – 6 participants
- A rapid review of the literature was also conducted to identify existing models of communities of care and strategies that have been used to support their development.
What is a community of care?
Communities of care are networks of relationships that provide a foundation for a whole-of-community approach to palliative care. In a community of care, social/informal relationships surround the person with the life limiting illness and their family member/carer(s) to support their everyday practical, emotional and social needs, while service providers contribute more formal support in partnership with these social networks.
Core components of a community of care are:
- the person who has the life limiting illness and their family/carer(s) (center of the community),
- a primary (inner) web of informal/social relationships that provide practical everyday support to the person with the life liming condition and their family/carer, and
- an outer web of formal service providers and support services that are accessed when needed.
How can the development of communities of care be supported?
This study found a lack of understanding about the concept of communities of care and a broader whole-of-community approach to palliative care. Participant accounts suggest that care networks in Tasmania predominantly comprised formal service providers, with only limited acknowledgment of caring networks as emerging from social/informal connections. Moreover, stigma associated with communication about death and dying was also raised by participants as a barrier to people having more open discussions about palliative care and accessing it in a timely manner.
- Raise community awareness about the core components of a community of care as part of a broader whole-of community
approach to palliative care.
- Establish coordinator/connector roles to support the development of communities of care across the state.
- PCT provide leadership in co-designing community coordinator/connector roles in consultation
with key stakeholders to support/promote communities of care.