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Research in long-term care design: Adapting ethnographic methods during the pandemic

In this interview, Chantal Trudel shares about the launch of the Carleton University’s new Centre for Community Engagement and how her research team in long-term care design adapted ethnographic methods to see greater participation during the global pandemic.

1. Tell me about yourself and what you do at Carleton University.

I am Associate Professor in the School of Industrial Design. The field of Industrial Design is focused on making products and spaces better, more inclusive, and easier to access. I have been at Carleton University since 2015, researching health and wellness design, with a focus on accessibility. My interest in healthcare design has been as early as my undergrad work in hospitals. I have vivid memories of shadowing nurses during their night shift to learn what the design problems were from their perspective and problem-solving together, on how we might improve their working conditions through design.

I was recently appointed as the Director of the Centre for Community Engagement at Carleton University, which launched this past July. I am stepping into a strategic planning role, to investigate how we can strengthen our commitment to community engagement across the university. Carleton has a long history of community engagement and was recently selected as one of 16 institutions across Canada to participate in a pilot study examining the potential to tailor the Carnegie classification process within the Canadian context. The Carnegie classification has been the leading framework for higher education assessment and community engagement recognition in the United States. Our participation in the Carnegie application helped us reflect on our community engagement. The process provided insight on how we might move forward strategically and at a systems level to grow our competencies in this area and better serve our community partners, and people at Carleton engaged in this important work.

2. Can you tell me about your current community-based research project in long term care?

Prior to the pandemic, in Fall 2019, I began a project with the Ontario Centres for Learning, Research, & Innovation in Long-Term Care (CLRI). In these early conversations, the OCLRI identified the need to investigate the role of design in end-of-life care, suspecting it was underrepresented in design research, and yet so critical to supporting the quality of life or the person dying and their caregivers. We began in 2019 with a literature review on the design of end-of-life care within long term care, hospitals, emergency rooms, and at home. Our research revealed very little work had been done in this area of design. When the pandemic occurred, other significant challenges related to end-of-life care emerged, namely, the tension between supporting comfort and supportive care during this seminal life event while abiding by infection prevention control protocols to support public health and safety, but kept people disconnected. Apart from end-of-life considerations, and before COVID-19, the design of long-term care homes needed to be re-evaluated to ensure the health, safety and well-being of residents, their families, and staff. It’s striking to see now how COVID-19 surfaced so many design issues in long-term care that negatively impacted these stakeholders on multiple levels. To study these issues in more depth, with seed funding from Carleton University and the American Foundation for Health Environments Research, we studied the design of different homes during pandemic conditions to document their current state and inform how we might re-imagine the design of homes to support future development.

3. How did COVID-19 impact your research design and what was the outcome?

In 2020, we could not go on site to conduct research, and that is the fabric of what we do in Industrial Design. We had to adapt our methodology, while remaining true to a community-based research approach. The idea of training staff, residents, and family members to be ethnographers in their own environments appealed to us, not only because it was more feasible during a pandemic, but also because it facilitated more meaningful participation of people with lived experience.

We distributed diary guides to staff to document their environment, and interview guides to residents and family members. The staff guide instructed them to take photos of interest to them during the pandemic and write a short description for each photo of how the home was handling infection prevention control and quality of care. We compensated staff and residents for their time and experienced such a high response from family members wanting to volunteer their time, we amended our ethics protocol to include focus groups to support greater participation. After collecting the diaries from staff, we came together to discuss their findings. Soon we will hold virtual design sessions with staff, residents, and family members to play back this work and co-create new, alternative designs.

The benefit of this adaptation was that staff, residents, and families could document and narrate their own experiences. As an external researcher, I may have only documented issues that I could see based on my prior experience or that confirmed my bias, whereas with peer researchers, we gained insight into the breadth and depth of their multiple perspectives. The staff photos effectively guided the course of our interviews, as staff moved from one photo to the next sharing their stories. This participatory approach also allowed us to recruit homes outside our region for broader reach and allowed staff, residents, and family members to take greater agency in imagining better ways to design long-term care homes.

4. What are the next steps for your project and what do you hope to achieve?

So far, we have conducted research with five homes in Ontario, with three currently in the process of data collection. The seed grant will come to an end this year in December, and we are applying for more grants to expand the study to thirty homes beyond Ontario. But whether it is five homes or twenty or thirty, their documented experience is invaluable. Capturing findings across different types of homes and demonstrating consistent concerns is important to inform a strategic approach to redevelopment. The learnings from this study will provide a basis for creating a toolkit to help homes with short-term planning, but also setting, longer-view, priority areas for long-term care home design. I hope that by sharing a picture of the current state of long-term care design and the associated risk factors, there is an increased recognition of the much-needed resources and funding to better support this sector.

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