The aim of this project is twofold. First, there is an aim to better understand how the dying person, family and staff experience the space and place in which and dying occur. Second, there is a methodological aim to explore how co-design can be used to examine central concepts further in order to develop interventions. These goals will be achieved through addressing central research questions, such as: ”How is space and place related to central concepts of importance in death and dying?” and ”How can design tools (e.g. visual triggers and participatory workshops) be utilized to explore these central concepts and demands further?”
There is a lack of research on the experience of settings for dying and death, particularly, from a place-centered perspective rather than as a physical space. Even less attention has been paid to how such settings can support death and dying being understood as a meaningful experience, in line with one’s own life and history. However, recent reviews and research on health care design more generally found a growing body of robust studies indicating that the physical care environment can reduce stress and promote well-being. This doctoral project will use the integration of design to engage the dying person, staff and families in joint processes and interventions in these settings.
The intersection between death as a difficult personal experience, the need for a more widespread knowledge of palliative care and its relation to space and place in EoL care represents a research gap. As a way to approach this gap, this project is theoretically and methodologically influenced Bate’s and Robert’s Experience-based Co-design. Bate and Robert point to the limits of the concept “patient-centredness” in being able to adequately drive the changes required in designing all aspects of today’s health care system, arguing that whereas “the traditional mindset” places patients in a passive role, based on listening and responding to ideas generated by others, proactive influence which challenges this hierarchy is instead a key to change.
The project plan combines two lines of prior work underlying “Space and Place” into a joint concerted effort. One line of work involved collaboration with the Experience Design (ED) Group at Konstfack, Stockholm, in developing interventions to enhance the experience of space and place for death and dying. The other line consists of empirical research, financed by a one-year grant from PICK-UP (ALF SLL) investigating the experiences of space and place in settings providing EoL care from the perspectives of users, that is, the dying person, family members, and staff.
Initial descriptive and explorative data from a range of user perspectives will be generated through a variety of methods. These data will provide the basis to better understand central theoretical concepts and their releance in the EoL context and for developing specific interventions, aiming to enhance the experience of place and space in EoL for the dying person, their famly and staff. Specilazed PC facilities will function as laboratory environments to allow interaction with users in developing, testing and refining interventions, which will later (not within the scope of this doctoral project) be disseminated for controlled testing in other settings caring for dying people (e.g. residential living facilities, hospitals).
A central theoretical and methodological framework for this doctoral project is related to Experience-based Co-design, as a participatory action research approach, using narrative interviews and other means of eliciting user experience, and subsequently using these data to improve health care.
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