Authentic Ethnography
Portrait of a mother who has a child with medical complexity
When I was a student at the d.school, I remember that conducting ethnography was rushed. We rarely had assistance with finding suitable participants to interview, and insights were expected to surface after two hours of interviews over one afternoon. I was often frustrated with the attitude d.school instructors brought to this work: “Quick!! Find your subjects however you can (but be respectful while you panic under the time pressure), develop “insights” after a few 30 minute interviews and present brilliant solutions by the end of the week. See ya, bye.”
Having experienced this style of research, I am very conscious of how I approach ethnography with my own students. The nature of healthcare design requires foresight, planning and a careful selection of participants who are ready and willing to discuss sensitive and emotional information. The clinicians I have taught with over the last 6 years understand that there is an ‘order of operations’ for enrolling subjects for research purposes. Designers, on the other hand, typically aren’t trained in academic research techniques, and therefore do not understand that there is an existing protocol for selecting participants, offering incentives and following up with participants on the outcome of the study. Although I always felt frustrated with the pace of one-quarter classes at Stanford, my co-instructors and I did our best to plan enough time for a literature review, in-class presentations or talks from experts and patients, and finally immersive experiences that allow a designer to “get to the heart of it,” by putting themselves in the actual context of a healthcare setting. In “the real world,” participant interviews would likely go on for at least 4-6 weeks and we would talk to at least 10 people before we would begin to synthesize our findings. The d.school class experience is a taste of the design thinking method, but is not a realistic timeline for developing a really tight need statement and a truly useful solution.
Often, after these 1-quarter classes, my students would ask me, “so, what’s the follow on class?” Sadly I would say, “there is no follow on class.” The approach changed a bit in 2019, as the d.school has began to see the need for for creating longer (2-quarter) courses that explored complex healthcare issues. On a 2-quarter schedule, we spend more time in the “understand” phase, and have the ability to develop higher resolution prototypes that we can test with various stakeholders.
In our class, “Designing For Child Health Equity,” students had the opportunity to visit families and learn about the day-to-day activities of caring for a child with complex health issues, while dealing with serious financial and social burdens. Although the term “disparities” is often interpreted to mean racial or ethnic disparities, many dimensions of disparity exist in the United States, particularly in health. If a health outcome is seen to a greater or lesser extent between populations, there is disparity. In our class we are studying a population of people on Medi-Cal insurance caring for a child who was born preterm, spent time in the NICU, and who has developmental challenges or disabilities that need regular medical attention. Each student group took a video of their in-home interview to remember what was said, and to capture artifacts in the home that point to daily activities for maintaining the health of the child.
I had the opportunity to watch each of their videos (a few of them over and over) and marvel at the strength, dedication and love each of these families have for their child. Above are a few still images from those video interviews*. The learning curve for these parents has been tremendous: from being instructed on how to operate specific equipment at home, to dispensing medications, to navigating the myriad specialists they are recommended to visit. I believe the students absorbed more than they expected because today during our class, almost every group’s “point of view” (POV) statement was changing based on this immersive experience. It’s one thing to sit and listen to someone’s story in the classroom, it’s quite another to insert oneself in their world, navigate the interview and make the subjects feel at ease. I was quite impressed with the our student’s questions, their unobtrusive interviewing style, and poise during more emotional moments in the interviews. Besides having mindful and curious students, I attribute the interview success to preparing everyone on field guide development, discussing the “ethics of empathy,” and Dr. Lee Sander’s efforts at recruiting generous participants who were open to sharing their challenges with our students.
*Permission was granted to publish images from student interviews with their participating families.
