Introduction: Public health approaches to end-of-life (EoL) research and care are relatively rare in Sweden, and health-promoting palliative care (HPPC) remains a foreign concept for most. We recently consolidated our HPPC endeavors into a cohesive research program, DöBra, to promote constructive change and awareness to support better quality of life and death among the general population, in specific sub-groups, and in interventions directed to professional groups caring for dying individuals, their friends and families.
Objectives: In this article, we aim to share ideas, experiences, and reflections from the early stages of this research program, particularly in relation to how we try to work with new 'publics', to contribute to the development of HPPC as a new research field.
Methods and Results: We discuss some considerations which arise in the Swedish context, and present the underlying ideas and approaches used in the research program, with examples of their application. HPPC, based on ideas from new public health, is essential as an umbrella for the DöBra program. Action research, experience-based co-design, and knowledge exchange, all aim to bring together a variety of stakeholders to exchange ideas and expertise, and co-create experience-based evidence through knowledge generation, dissemination, and sharing.
Discussion: In reflecting on what we have learned about publics and partnerships in EoL research to date, we question distinctions made between professionals and publics, concluding that including publics in public health research, means also including ourselves and making public many of the reflections, the mistakes, and the experiences we all have, to foster collective learning.
2016. Vol. 24, no 1, 19-24 p.
Action research, End-of-life research, Experience-based co-design, Health-promoting palliative care, Knowledge exchange, Palliative care, Public health