This semester, I’m drafting two dissertation chapters using the data I’ve collected so far about the culture of food allergies and the practice of allergy medicine. This means I’m reading through lots of notes and listening to and taking notes about over a day of audio recordings of interviews.
As a whole, my data consists of five kinds of information: recordings of formal, prearranged interviews with people with allergies, food allergy advocates, and medical workers who work with allergies; handwritten notes about these conversations and about allergy advocacy conferences and events I’ve attended; and handwritten notes about clinical allergy practice and physician-oriented events; books and articles from the scientific and advocacy literature about allergies; and pamphlets, booklets, and other souvenirs I’ve collected at conferences and other gatherings. This information varies by both format (written or electronic document or audio) and topic (life with allergies, food allergy advocacy, and medical/scientific work researching/treating allergies).
I’ve been especially focused on revisiting the stories of people living with allergies the past few weeks, starting with audio recordings and supplementing my listening with notes I took during and immediately following those conversations. Most of the people I’ve talked to so far about living with food allergies find some way to do advocacy, education, or research work. I think this is partially due to the fact that I began by reaching out to support groups, and people involved with support groups are probably more likely than average to be active in local and regional policymaking and awareness projects, too. For many, the experience of living with this condition motivates them to make it easier for others with food allergies to get along in the world.
There are other commonalities, too, such as struggles to get accommodations in schools and family tension arising from a perception that food allergic individuals/parents are just being finicky about food. There are also common silver linings: an appreciation for small triumphs and a reason to eat healthy and pay close attention to one’s health top the list so far.
At another level, listening to these recordings inspires a few thoughts about how my interviewing skills have developed:
- More than anything, I appreciate the time and bravery of everyone who has taken the time to talk to me more than I could possibly express. I started this project with only a very broad plan. Though I have procedures in place to protect the privacy of those I interview, I hadn’t completely thought through the awkwardness some might feel talking about medical issues with acquaintances (it’s not a big deal to do so in my family). Looking back from here, I’m amazed by the generosity of those who told me the honest stories about their lives and families, especially in earlier interviews where my interview skills were less developed.
- Questions change as the research progresses. That’s ok in ethnographic research, though in other (typically more quantitative/statistical) research traditions it’s a big no-no. I have a rough interview script that’s about a year old that I still use to get started. But I’ve learned to mix it up: for example, asking questions in such an order that we go backwards in time instead of forward when someone has gotten into advocacy work or started a business based on experience with food allergies.
- Old questions might need to be revived. In a few early interviews, I asked folks about how they would define allergies. It got lots of laughs from non-physicians and impatience from physicians. So I dropped it. But listening to those early interviews, I realize it was a great question to learn about what aspect of living with allergies has the most impact on peoples’ lives.
- I’ve learned a lot about how to listen. This is especially important when I talk to people over the phone, where slight lags in the communication medium can easily lead to me talking over my conversation partner. Usually saying nothing until the silence almost gets awkward gets the best result: I don’t interrupt, and the person I’m talking to has plenty of time to express herself.
- The questions that I ask reflects how much I’ve already learned, and how much farther I have to go. I can ask much more precise questions than I once was able to. I know the key actors in the food allergy world, so if someone mentions an organization or food product, I’m primed to pay attention to what they have to say about it. It makes me a better interviewer, since it’s easier to just talk to my interviewee, and it makes me a better researcher, since I can follow hunches about what events or activities might have more significance than they seem to have at first.
Thank you to everyone who has taken the time to talk to me, and who has welcomed me into the conference circuit, online communities, and in person communities of food allergy parents, food allergic adults, and food allergy advocates. I can only hope that what I find from my research and how I share my findings can ultimately contribute to improving life with food allergies to give back a little bit to all of the wonderful people who I’ve met so far!