Connection, communication and temporality in conversations on death and dying

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:

  1. Develop and adapt art and design techniques for engaging in research on the topic of death and dying
  2. To understand how communication technologies are used during decline and death, especially for families at a distance
  3. 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.

 

SSHRC Logo

 

Creator: 
Photograph of a student writing on a whiteboard. Text on the wall describes potential patient reactions to a negative diagnosis
Friday, April 13, 2018 - 10:00am
Lab Member: 
Kate Sellen

Channelling design thinking in healthcare

Grad ad design for health

By Karen Palmer

 

It was a tweet featuring student tweaks to the kind of personal protection equipment used by healthcare workers battling the Ebola virus that caused Associate Professor Kate Sellen’s phone to ring.

The manufacturing conglomerate 3M was on the line. They’d seen the Twitter post from a student in the Master of Design in Design for Health program about ideas for improving the full-body protective suits, which are made at 3M.

The manufacturer, impressed, wanted to learn more.

“This is an indication to me that not only are the students really talented, there's an appetite for answers to these very specific but marketplace-driven questions,” says Sellen, the the MDes program’s director.

Channelling design thinking into healthcare may be long overdue. But it means bringing a different way of thinking to a heavily bureaucratic system that’s got multiple stakeholders, myriad complexities and an ever-changing model of delivery.

“Healthcare is one big giant, wicked problem,” says Jules Goss, an OCAD U associate professor who worked for years as designer-in-residence at Baycrest Health Sciences, a Toronto hospital specializing in geriatric medicine.

“There are so many disrupters at play: there’s a massive demographic of highly demanding seniors who are just on the cusp of retiring now. They expect a lot and they demand a great deal. But we do not have the fiscal health to be able to just do the same things we’ve done before to provide them with healthcare they're likely to expect. We have to come up with new ways and new approaches,” he says.

“My position is that, if you can use design thinking and design process effectively, you can come up with templated means of bringing elements together for optimal impact within the resources you have.”

Sellen says meeting the demand for design in healthcare means graduates will need to understand the sector and how choices get made. Most healthcare decision-makers live and die by evidence, needing studies and numbers and statistics to support policy changes or new processes.

“If data have been generated using particular methodologies, then it counts as truth. If it’s not evidence-based, it doesn't exist. This is a problem for design, because we're not visible in the evidence base,” Sellen says.

“We train students to look for stuff that is more qualitative, that gives context but is also accepted as truth in the medical world, and then to build on that.”

Aspiring health designers might then gather information from design-based research, using observation, creative co-design workshops and in-depth interviews.

“By the end of the project, they can show their client or partner that they've understood the value of the evidence base and respected it,” Sellen says. “They’re also bringing this other lens and this different kind of qualitative data to the table, which has resulted in the combination of all these things into a new way of doing things.”

Last year, the Design for Health program’s first cohort of 12 students worked with the Toronto Rehabilitation Institute on re-designing a ward for severe dementia patients, focusing on giving patients a calming experience that feels more like home than hospital.

They also tackled the kits that carry naloxone, thinking about ways to improve the packaging, accessibility and delivery of the drug that can reverse an opioid overdose.

In a partnership with Saint Elizabeth Home Health Care, they developed interactive narrative exercises to explore issues that come up at end of life, such as whether to call for emergency help or to try to manage issues at home.

“That visit to the emergency department can be incredibly costly, not just from a healthcare point of view but from an emotional point of view,” Sellen says. “Those kinds of things we can tweak: the experience, communications, materials, products, even spaces that can do the job of relieving those situations where you end up with people lining [hospital] halls.” 

“It can be used for a big outcome, like how do you design the care environment of the future, but it can also be used on a very pragmatic level, and personally here I think is where the biggest impact will happen,” Goss says.

“Healthcare is a very difficult environment to effectively make those changes happen,” he adds. “It’s called healthcare, but it’s all tiny islands of different activities in the same broad sea of what we define as healthcare. Design thinking is not the answer to all of the problems, but it’s a component to some of them.”

 

A former research writer for Healthy Debate and the author of Spellbound: Inside West Africa's Witch Camps, Karen Palmer’s clients include the Toronto Star, Sydney Morning Herald, South China Morning Post and Washington Times.

Template: 
Inline Image Template
Keywords: 

Synthesis Maps | Gigamaps | The CanIMPACT Project

Strategic Innovation Lab has developed a repertoire of systems mapping methods and outputs to help understand and guide complex service design, social system design, and knowledge translation for complex systems research. Synthesis maps  are typically designed as communicative artifacts that translate multiple knowledge perspectives about social systems to illustrate the dilemmas and challenges within a complex system scenario. Synthesis maps are particularly effective in representing multi-level social systems such as are common in healthcare – indicating an outer boundary (e.g., national or provincial system), the service networks, agencies and specialized providers within a care context, for example.

The Gigamap technique was developed by Birger Sevaldson of the Oslo School of Architecture and Design, who sLab has collaborated with since 2011 in the development of systemic design methods and the RSD conference series. This process develops a strong architectural and descriptive approach to complex projects, which is pursued through studio work using a research through design (RTD) process

Gigamaps and synthesis maps look very similar as finished products. However they differ in their developmental processes. Both are rich images that visualize complex system problems, and both are used as design artifacts in similar domains (from health to public policy, from service experiences to social change). Both are used with stakeholders for advising, planning, and designing for social and systemic challenges (wicked problems).

  • Gigamaps are more "direct engagement in the relations of a system." Gigamaps employ a research through design (RTD) practice of engaging directly with a system problem and following the contours of the complexity as expressed in a design space.
  • Synthesis maps evolved from the SFI pedagogy necessary to train students in systems thinking and to learn both system formalisms and systemic design for complex multistakeholder problems. Synthesis maps are typically designed as communicative artifacts that translate multiple knowledge perspectives about social systems to illustrate the dilemmas and challenges within a complex system scenario.

The SFI maps have been developed in half-term courses guided by design-led field research and extensive secondary source references to build descriptive system maps as a mapping of territory for systemic design of the social systems of concern. sLab also develops a core systems theory or methodology within the SFI maps as a means of pattern and leverage. Because the process sLab teaches is developed more as a synthesis of evidence and is informed by theory, their process is better considered as a Synthesis Map.

The typical synthesis map process requires a small team of graduate research assistants trained in the method, directed by a faculty advisor in a collaborative design process. Working through a series of drafts on paper and electronic modes, the team starts with a preliminary map, often sketched using graphic recording and rough free skecthes, followed by an integration of core concepts. Iterative refinements are made with sponsors/stakeholders to interactively integrate their insights and proposals with the design team's system maps. The move toward final synthesis and visualization progresses through studio workshops and team design and critique. 

The CanIMPACT Project (Canadian Team to Improve Community-Based Cancer Care Along the Continuum) is a multidisciplinary pan-Canadian program studying how to improve cancer care to patients in the primary care setting. Funded by the Canadian Institutes of Health Research for 5 years (2013–2018, Grant no. 128272) the project was led by Dr. Eva Grunfeld, Director of Research at U Toronto's Dept of Family and Community Medicine.  For the CanIMPACT synthesis map project, the sLab team (Jones, Smriti Shakdher, Prateeksha Singh) prepared two synthesis maps to reflect the discovered insights from the multi-year investigation: a clinical system map and a patient-centred map informed by the CanIMPACT Patient Advisory Council. The resulting maps were published (a first for a system map method) in Current Oncology and presented at the first Canadian Partnership Against Cancer (CPAC) conference, and MedicineX 2017.

The CanIMPACT Project included:

  • A domain and literature review: A scoping review of the CanIMPACT study and its references was conducted. Continuous searches informed emergent questions for representing mapping decisions.
  • Expert interviews and content analysis, with Visual Notetaking: The CanIMPACT qualitative study, the Casebook survey of cancer initiatives, and administrative data substudy reports were analyzed, guided by interviews with study area leads.
  • Knowledge Synthesis to design Maps in stages: In collaborative sessions, maps were hand-sketched to represent salient findings drawn from content analyses.
  • Peer critique of electronic and print Maps: Structured critiques of the maps were held with the CanIMPACT and PAC experts at key stages of map development.
  • Iterative Map Design: The clinical map was developed first, in stages that adhered to the method. The necessity for a patient-centred map was discovered during the peer critique step.

This project exemplifies well how the synthesis mapping approach can lead to high-quality representations of insights from complex research, how deeply deliberated discourses within a clinical or social research team can be articulated as systemic models, and how new knowledge production can be further developed toward strategic design outcomes such as program strategies and policy interventions. 

For further information on synthesis mapping and the CanIMPACT Project, please visit http://slab.ocadu.ca/project/synthesis-maps-gigamaps.

Creator: 
CanImpact Synthesis Map: Patient Experience of Primary Care in the Cancer Continuum A Relationship-Centred View of Breast and Co
CanImpact Synthesis Map: Canadian Clinical System of Primary Care in the Cancer Continuum
Monday, October 23, 2017 - 2:15pm
Lab Member: 
Peter Jones