To understand and improve factors that, from different perspectives, support well-being in settings in which death and dying occur
Despite recognition that the care setting affects outcomes for patients, family and staff, attention is rarely paid to how the setting better can support the memorable and often difficult experiences related to death and dying. This makes research on how settings for End-of-Life (EoL) can support wellbeing, safety and comfort an important area of focus.
The aims of this project are to both better understand how the dying person, family and staff experience the settings in which death and dying occur and apply this understanding through co-designing processes and interventions to enhance the experience of the EoL care environment—both physical and relational aspects—from these different actors’ perspectives.
We use an action research-based approach, Experience-Based Co-design (EBCD) to achieve change in care settings using expertise, ideas and insights from patients, family and staff. We have a contract with Stockholm City Eldercare Bureau which allows the project to conduct this research in residential care homes (RCHs). We collaboratively design and conduct EBCD cycles with actors from different homecare settings and RCHs. While societal discourse about dying and death primarily has a negative focus, highlighting poor care, we instead focus on constructive change processes related to EoL care environments, which can better support quality of Iife and death, by working in partnership with a range of involved stakeholders.
Project group/ Collaborators:
Ida Goliath, Med. dr, projektledare
Lena Alksten, strategist, Stockholm elder care bureau
Carol Tishelman, professor, Karolinska Institutet
Bo Westerlund, professor, Konstfack
Marta Szebehely, professor, Stockholm university
Keely Macarow, associate professor, RMIT University, Australia
Rebecca Hilton, professor, Stockholms konstnärliga högskola
Alastair Macdonald, professor, The Glasgow School of Art, Scotland
Glenn Robert, professor Kings College London, UK
Anneli Stranz, fil dr, Stockholm university
Hospicekliniken, Ersta sjukhus
Mälarbackens vård och omsorgsboende, Bromma stadsdelsförvaltning
Health care professionals, executives, quality developers, medically responsible nurses and unit managers in the district of Kungsholmen.
Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life
Soc Sci Med 2016 Nov;168():120-129