Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis

SAGE Palliative Medicine & Chronic Care

This episode features Brett Scholz (Medical School, The Australian National University, Acton, ACT, Australia). Consumer involvement is required by policy at all levels of health services. Some health disciplines have well-established research programmes focusing on consumer leadership. Palliative care is philosophically consumer-centred, but there has been less of a focus on consumer leadership at the systemic level of palliative care services. The review demonstrates that consumer leadership is an emerging practice in palliative care services and academia. Despite the potential challenges of consumer leadership, consumers are motivated to be engaged with the sector. Consumers are still not as involved in setting agendas in palliative care as policies require. The review findings extend understandings of how to better support consumer leaders, suggesting palliative care service providers educated by consumer academics may be more aware of power imbalances and thus later be able to use their influence for further consumer leadership. To meet policy requirements and realise benefits brought by consumers’ perspectives, more research conducted with (rather than on) consumers in palliative care is needed. Policy requires partnerships with consumers at all stages of palliative service planning, implementation, delivery and evaluation, but does not provide a guide for best practice about how such partnerships are done without tokenism. Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319854012

If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu: [e-mail]