Presenters: Brett Scholz, Dr Aileen Collier and Alan Bevan
Background and Aims
A public health palliative care (PHPC) approach supports power shifts in favour of patients, families and communities, positioning those living with the experience of life-limiting illness as ‘experts’ in health care planning, organization, delivery and research of dying and grieving. There are no guidelines about how this power shift might be realised. We aim in this workshop to collaboratively interrogate how such a power shift might move from rhetoric to reality.
Drawing on our combined expertise including lived experience of and research into palliative care, this workshop considers issues of paternalism, power and practice in research and organisation of dying and grieving.
Following a discussion of the lived experience of power imbalances in palliative care, participants will have the opportunity to debate and discuss the issue of power. We then present the evidence on power imbalance and introduce the concept of Allyship. Workshop participants will engage in identifying and critiquing exemplars of Allying with consumers.
Participants will be invited to consider how they might engage in Allyship to in their own contexts in small group activities and discussion.
• Critique current approaches to ‘involving’ consumers in planning and delivering of services and conducting research about dying and grieving.
• Describe the power structures at work at macro and micro levels of PHPC.
• Describe the concept of Allyship, the characteristics of Allies and how to best Ally with consumers
• Discuss and identify opportunities and strategies to ‘Actually Ally’ in your own setting and/or community
Conclusion and application to PHPC
There is a growing emphasis on collaborating with consumers. Workshop participants will develop understandings of Allyship in their own contexts. For researchers, this might include how to co-produce research with consumers. In service settings, this might involve critiquing power structures positioning consumer involvement in tokenistic ways.