INVESTIGATING CONNECTION, COMMUNICATION AND TEMPORALITY IN CONVERSATIONS ON DEATH AND DYING USING A DESIGN RESEARCH APPROACH
The objective of this project is to develop improved understanding of communication at end of life in order to enhance public dialogue on end-of-life issues and provide insights on use of communication technology in end-of-life service provision. Specifically, this project aims to:
- Develop and adapt art and design techniques for engaging in research on the topic of death and dying
- To understand how communication technologies are used during decline and death, especially for families at a distance
- To develop an example artifact, based on the outcomes of the research, to be used in stimulating dialogue on new ways of understanding connection and the temporal aspects of death and dying
This project explores themes of technology use, connection, communication, and temporality in the dying process. As seniors make up Canada's fastest growing age group, Canadians will increasingly need to confront the experience of "end of life". While death and dying includes conversations on the concerns of healthcare providers about medical care, a more comprehensive conversation about end-of-life encompasses discussions on a broader range of topics, including family dynamics, interpersonal relationships, life experiences, spiritual values and personal beliefs and preferences.
While technology can be a connector for family at a distance, its role when the pace of decline changes is not well understood. This is an especially relevant concern in a time that increasingly sees adult children living at a distance from their parents. When family members are not physically present their understanding of a relative's decline in health is reduced, impacting their ability to respond appropriately, plan, and equally distribute tasks related to the care of their dying loved one.
This project brings together families, support groups, caregivers, and healthcare providers to better understand the use of communication technology in connecting families at end-of-life. Clients, family/friends, and providers at the Toronto Central Service Delivery Centre of Saint Elizabeth Health Care were invited to participate in interviews and co-design workshops to identify key concepts and themes regarding communication around decline and death. Data from this research will be integral to creating a "Death, Dying and Design" toolkit, intended for design practitioners to use as guidance when engaging in design research on the difficult topic of end-of-life.
Research creation artifacts generated through this project will enrich public discourse and open up dialogue on end-of-life choices. Facilitating dialogue on these choices, such as the decision to die at home, in hospice, or to forego intensification of care, has the potential to significantly impact policy on the provision of hospice or end-of-life care in the home.
For more information, please visit http://deathdyinganddesign.com and The Reflection Room.
This research was supported by the Social Sciences and Humanities Research Council of Canada.