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

Published: Oct. 17, 2019, 10:27 a.m.

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This episode features\\xa0Brett Scholz\\xa0(Medical School, The Australian National University, Acton, ACT, Australia). \\xa0Consumer involvement is required by policy at all levels of health services.\\xa0Some\\xa0health disciplines have well-established research programmes focusing on consumer leadership.\\xa0Palliative care is philosophically consumer-centred, but there has been\\xa0less of a focus on consumer leadership at the systemic level of palliative care services.\\xa0The review demonstrates that consumer leadership is an emerging practice in\\xa0palliative care services and academia.\\xa0Despite the potential challenges of consumer leadership, consumers are motivated to be engaged with the sector.\\xa0Consumers are\\xa0still not as involved in setting agendas in palliative care as policies require.\\xa0The review findings extend understandings of how to better support consumer leaders,\\xa0suggesting 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\\xa0further consumer leadership.\\xa0To meet policy requirements and realise benefits brought by consumers\\u2019 perspectives, more research conducted with (rather than on)\\xa0consumers in palliative care is needed.\\xa0Policy requires partnerships with consumers at all stages of palliative service planning, implementation, delivery and evaluation,\\xa0but does not provide a guide for best practice about how such partnerships are done without tokenism.

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Full paper available from:\\xa0https://journals.sagepub.com/doi/full/10.1177/0269216319854012

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If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:\\xa0anwosu@liverpool.ac.uk

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