November 19, 2019: Design for Demographic Change

with Helen Fisher

Pilot Projects

Dan began class today by opening a discussion about pilot project progress.

• Ema shared about her progress with her workshops on shifting metaphors around meat consumption, from “winner winner chicken dinner” to “meat doesn’t take into account vulnerable populations, like a bully.” She’s using images that participants cut up. She is still looking for a way to conclude the experience in a way that feels complete, and ways to manage multiple pairs of participants.
• Ulu spoke about her efforts to shift metaphors around big technological developments. She’s speaking with researchers at a software institute and finding some resistance to explaining research and detail. Some people struggle with metaphors, while others find it easier to come up with them. Natural disasters came up as an example metaphor of thinking about the unseen costs of digital anomalies or disasters. Her next step is to do some research with people online to see what kinds of imagery these ideas evoke.
• Corine shared about her progress on studying metaphors for visualizing wellness. At first, she thought about running workshops with participants. She’s shifted gears to focus on visualizing her own health data and experiences. A concern she has is that she doesn’t inadvertently minimize someone’s experiences by using cute expressions. Hilary suggested interviewing different medical professionals to see how they might feel about patient-supplied data and how seriously they would take certain metaphors. Corine is focused on making this information primarily useful to the patient.

The 100-Year Life

Next, we discussed some of the reading assigned for class this week: Claire Craig, Helen Fisher, and Paul Chamberlain’s article “What do ‘Life Cafes’ tell us about dying and end of life care?” (2018).

• This paper is about a participatory method and a philosophy that people should have more personal control over the amount of care they have at the end of their lives. Designers should pay more attention to this.
• If 1 in 3 people in the West will live to be 100, how does that change the way we are approaching healthcare? Is society ready?
• “Life design” gives a new perspective for palliative care. Should it expand on life coaching? What happens when we think about visualizing, explaining things, enabling — skills of designers? If we think about a shift in conceptualizations of retirement, from a “we work until we retire” perspective to a “micro-retirement” perspective, it shifts how we plan for our futures.

Guest Speaker: Helen Fisher

Helen is a researcher and designer at Lab4Living at Sheffield Hallam University. The team works a lot with product design, fashion, and textiles. Helen’s background is in product design and her work today is research-based. Helen shared about a Lab4Living project, funded by UK-based charity Marie Curie, about end of life care. Could the design team bring a fresh perspective to challenges we face with palliative care?

In the case of palliative care, we aren’t trying to save people’s lives, but make their final days comfortable, enjoyable, and meaningful. In the UK, a lot of people want to be at home, but can’t be, and end up at hospitals. The design team chose to approach this rethinking process from the angle of community. They had heard of a movement called compassionate communities and wanted to explore it in this context.

They started by trying to understand what is meaningful to the community in life, care, and end of life. Palliative care tends to be an unpopular subject, so they took the approach of focusing on life. In the course of their research, the team found death cafes popping up all over. Death cafes are places where people can go to learn more about resources and have discussions about dying. Nobody wanted to go. So, they designed the Life Cafe. It’s a research method in the form of a workshop. The methods are qualitative and tangible, with lots of objects.

In the initial workshops, they asked people to bring things along that were meaningful to them. Things like teddy bears, mugs, and locks of hair helped to start conversations with people and learn more about their lives. The team also used critical artifacts — objects that provoke discussion, memories, and questions — based on findings from a previous project about aging well. (“Exhibition in a Box” researched what’s important to people as they aged, and condesned that research into objects.) The team also introduced photographs, games, and other stimuli to engage people in research questions.

In total, the team ran eleven life cafes with people involved in coffee, craft, and religious groups in South Yorkshire. They iterated on every workshop, building a body of research and artifacts as they went. Next, they began to distill it until it was manageable enough to be a kit that people can use to facilitate their own group.

Compassionate communities are a great mechanism to get people together and form networks based on compassion. In the UK, they train people as network connectors that have worked in a community for a long time. They might have a healthcare background. They gather information about resources in the community and connect people to each other and to resources. The team did research to map these networks and incorporated it into the project.

Q&A

How did you craft the manual you put together to get people to use the kit as a whole? What principles did you use?

We began with documenting what we did when we facilitated the sessions. Then, we worked with volunteers from the community that wanted to facilitate life cafes, and gave us feedback. Some of them took the material and made it their own activities, and we asked them to write it up the way that they did it.

How did you train your trainers?

We worked with our research groups, who picked up the facilitation over time by first participating. And then, we worked with them to develop our manual. People typically spend about an hour with the kit looking it over, and then they try it out on a cafe. It also doesn’t have to rely solely on a facilitator, where groups can use the manual and facilitate themselves. We’re also working on some videos where facilitators explain their experience. Having said that, we’re just about to begin sending the kits out to people, so we’ll see how that goes.

How have you seen this grow?

This kit was designed for anyone. We’ve found that it’s more retirement-age people, and more women than men, who are using this. There is probably a project in there to find something that’s more suited to groups of men, if not a cafe model. We’ve also gotten the kits into educational settings.

Thank you, Helen!