This podcast episode takes a deep dive into childhood food allergies with Janis Goldie. Janis sheds a light on common misunderstandings surrounding food allergies and the role of social inequities in food allergy management. Her research focuses on the real-life experiences of caretakers of children with food allergies. There is a need to increase public education and overall support for the caretakers.
Podcast episode host: Fleur Esteron
Interviewees: Janis Goldie
Podcast theme music: Laura Bruno
Script editor: Kathy Dobson
Script editor & project manager: Myriam Durocher
Transcript
*music*
Fleur Esteron: Hello, everyone. You’re listening to Food Matters’ podcast series, brought to you by Carleton University. My name is Fleur Esteron, and I’ll be your host for this episode.
I recently had the opportunity to meet with Janis Goldie, who presented at the Food Matters and Materialities Conference. Here is what came out of this important conversation.
Janis is a Professor and the Chair of the Communication Studies Department at Huntington University in Sudbury, Ontario. During the conference, she presented her research paper entitled, When Every Bite Could Kill: Examining the Material Experiences of Caretakers of Children with Food Allergies.
Her presentation sheds light on common misunderstandings around food allergies and the role of social inequities in food allergy management. Janis’ research focuses on the real-life experiences of caretakers, particularly mothers, of children with food allergies.
I asked Janis what led her to this research, and here is her incredible response:
Janis Goldie: Great question because not probably surprisingly I have children that have food allergies and so that happened later in my life, right. Both of my children were born with severe nut and a few other allergies. So, all of that background informed my interest in it, obviously. It was really eye opening for me doing the interviews because I was very, very cognizant of my own biases. And that’s why we actually did it as a team effort, as well. So there were two other researchers, a student, Masters of Science Communication student helped us out immensely and another professor at Laurentian. So we did the interviews, the analysis, and all those things, each of us separately. Because I was really kind of worried that I was gonna impose my own biases. But that certainly wasn’t the case. And there was a lot of themes that cropped up that were different but a lot of similar themes in terms of the experiences. That’s were I came from it. Always, as Communication Studies specialists, you’re interested in how things are getting defined, and that was one of the questions that we asked everyone right off the hop, what does a food allergy mean to you. To me, those answers were some of the most interesting out of all the research actually. It really showed the difference between the parents and the medical professionals and the education professionals, they defined it quite differently. We look at food as such a personal choice often. It’s something we get to do and we get to make decisions about, and it’s such a socially contested issue in that way. A food allergy isn’t often seen as a disease, but that it’s a nuisance or it’s the child’s choice. Those kinds of things. The policies around food allergies are really different than if you were to think about childhood diabetes, which, again, obviously isn’t a choice. It’s a medical condition. The fact that it’s food makes people think it’s a choice. But that was a really long answer to a very short question. But that’s where it’s coming from.
FE: Hearing Janis’ answer, I realized that, for many of us, there are still misunderstandings around food allergies… I asked her to explain why this is so. Here’s what she said:
JG: One of the major themes that kept coming out was the lack of education and the lack of understanding about food allergies. At every turn, whether it was with family members, or whether it was with medical professionals, or whether with you know principals, you name it, team coaches. Story after story was people didn’t understand what food allergies are, what it means to deal with food allergies, and the constant education that these caretakers had to do on a daily basis. They were constantly teaching, constantly communicating. For that reason, I think it’s really important to focus on the education pieces to a broad community, a broad stakeholder community so that different people are understanding how these things come across. Unfortunately, as with many things, we understand things in terms of media representations and the media representations of food allergies are not great. They tend to be comical, or ridiculous, or they’re made fun of, they’re poked fun at. The people who have food allergies are shown to be weak or picky. So this kind of education project that the parents had to do, particularly, it’s the thing that we really need to focus on and work on because, undoubtedly, there was a lot of themes. But that was the overarching theme, that more education is needed.
FE: During her presentation, Janis talked about the material experiences of caretakers of children with food allergies…. Since this was an expression that I hadn’t heard of before, I asked her to explain what she meant by “material experiences” and to provide some examples to put it into context.
JG: The way we looked at it was in terms of the reality of the day-to-day management of caretaking with children with food allergies. An example would be, thinking about, food labour comes to mind for me a lot. Particularly people who had multiple food allergies but also people who had a singular food allergy in a child. They can’t just go to the store and buy crackers or cookies, especially if it’s an egg allergy or soy allergy. It’s very difficult to find prepared food stuffs that don’t have egg or soy or even dairy is a really tricky one. Those parents were the food labourer. They’re making everything from scratch every time there’s an event at school. If you know someone’s bringing in cupcakes or cookies for a birthday party, they have to make and send in something for their child. If there’s a birthday party they’ve got to create their own pizza and send it with the kid or the kid can’t go. We think about how time consuming our own food preparation is, there’s just so much more food labour. And then grocery shopping. So I think that’s what I mean about material experiences, maybe that’s not what everyone means by that term, but I was thinking of the day-to-day management that these parents are experiencing.
FE: As I mentioned earlier, Janis’ research focused on the real-life experiences of caretakers, particularly mothers. This discussion made me realize how much extra work it is for mothers, to help manage their child’s food allergies.
So… I asked Janis, based on the participant interviews, what she saw as the mothers’ number one need in order to help them feel supported in this often challenging journey of managing their child’s food allergies.
JG: The goal is still to come out with some real outcomes that can be achieved in a community. I think one of the clear outcomes that we’ve heard over and over is that a support group would help immensely whether that means an online support group or physical. These people need to find each other, and their biggest moments of assistance actually came from peers and other people that had food allergies, rather than the medical profession as much as you don’t want to hear that. At some point they felt like they were the experts that they could help other people. And then educational documents. It came very clear that they were moments where certain things could help immensely in their experiences. That’s where the public health unit is going to come in, once we get the report wrapped up and we say these are some of our suggestions, that’s when we’re going to work with them to try to deliver some of those pieces and efforts.
FE: During her presentation, Janis mentioned that one of the challenges for children living with allergies includes social exclusion and lack of social opportunities…. I wanted to know more about this. So I asked her if these children encountered other challenges while living with food allergies.
JG: Especially in terms of social exclusion, the big ones are things that we take for granted like birthday parties, even family potlucks, you can’t just say in a potluck if you have food allergies. It’s probably the worst possible thing. Every time someone wants to go to a restaurant. Those kinds of situations, because food is such a big part of our daily lives and our social lives. Almost every time we socialize, we have food as a part of it. It’s very rare that we get together with people and don’t eat or drink, in Canada anyway. It’s a very interesting north American trait. Because of that, because food is such a big part of social interactions, I think that’s the biggest challenge and that’s when sometimes they get excluded because people assume that we can’t have somebody over because we’ve got peanut butter in our house. They’re too nervous about it, or they don’t want to take the chance and they’re afraid. It’s not necessarily that they don’t want to invite the child over, they’re really worried about it, or they don’t know how to handle it. They’re nervous. There’s a lack of social invites for a lot of the kids. Probably, no surprise, have pretty heightened levels of anxiety. The parents are anxious, I think sometimes kids reflect the parents, not all of them, but quite a few of them are quite anxious, especially about new experiences, when they’re going into new environments and not sure what they’re going to meet. Anxiety was a problem.
A number of the caretakers talked about students and the children having food aversions. Some of the ones that were diagnosed quite late, in fact, when they were having a hard time getting an official diagnosis. The kids got so nervous about food in general that they couldn’t swallow, couldn’t chew. Their anxiety about eating was so heightened, so there were some serious food aversions. Even, I can’t remember the word that the parent used, but development, in terms of chewing and eating development. Some of those things were outcomes, a few of them mentioned bullying, which is pretty common in the literature on food allergy. But I don’t think it was as prevalent in the interviews as it is according to the literature. So that’s kind of interesting and we’d have to delve into that in terms of the research maybe why it’s not. I don’t know if it’s a smaller community, a lot of these kids grow up together. But what was really interesting, I think, is opposite of the bullying. This was all through their parents and we didn’t interview the kid so it’s all kind of second hand but that the children felt like their friends and their peers were incredibly supportive. There were stories of their friends telling the teacher, you know, Joe can’t have that, you got to get that out of the classroom. There’s a supply teacher, they don’t know. They’re quite protective and they look out for each other, so they seem to really understand the food allergy world. Unlike sometimes, those of us older who maybe didn’t grow up with it as much. Just about every child has a friend or someone in their class now that has at least one food allergy. That’s not the world I grew up in. So I think there’s that disconnect in a way between the older generation’s understanding and maybe not so much for the younger generation. Which I thought was kind of hopeful and encouraging for those kids. But again I didn’t talk to the kids, it was mainly through the parents. Of course they were focused on their experiences probably more so than their children’s.
FE: Janis’ answers to my question highlight the importance of community, not only for the mothers but also for their children. In her presentation, she mentioned that her participants, again who are caretakers for children with allergies, experience feelings of guilt.
JG: To me that was probably, from my theoretical perspective, I found that part really fascinating because I’ve done other research on gender and feminism. I thought it was really interesting that, first of all, we only had self identified mothers, female mothers, come and talk to us. So that was pretty interesting. It also became very obvious throughout the interviews that the caretaking was their role. So they would talk about, what I do, what I do, what I do. Sometimes we’d ask questions, so who else is involved, who supports you. Very often, if they had anyone, it was really their mothers. Interestingly, this isn’t generalizable, the in-law family sometimes presented a lot of challenges and didn’t believe in the allergy. It was this really interesting generational relationship with females and their mothers. So the only person some of them trusted to take care of the child, besides themselves, was their mothers. So imagine a world where you feel like you can’t walk away from your kids at all. And when you’re working, that’s really stress inducing. We all need that break. So that was interesting.
So as part of that is this idealization of motherhood. That’s a whole other theoretical ball of wax. The idea that as the good mother, as the perfect mother, we self sacrifice. We ensure that it’s the kids above us and that moment in time we’re fully responsible for every piece of their well being. Which is, of course, ridiculous. But that’s the popular construction of what motherhood is. It was very interesting that these women had internalized what it means to be a good mother. Their responses about guilt were, I should have known that my child had a food allergy; I can’t believe I gave him the yogurt that almost killed him; I should have done this and I should have been more aware. When everything they talked about in terms of guilt, they would literally say, I feel like a terrible mother. It was really around mothering. The guilt was so much associated with what being a good mother is.
FE: Janis’ response highlights the layers that exist not just in the “idea” of being a good mother, but specifically around the “idea” of being a good mother while managing your child’s food allergies. It’s apparent that society still has a long way to go in supporting mothers taking care of children with food allergies. Janis’ research helps us take that important first step towards understanding their experiences. There is an apparent need to increase public education and overall support for the caretakers. Janis has truly provided us with some “food for thought.
This concludes today’s podcast. I’d like to thank you, our listeners, for tuning in and to Janis Goldie for sharing her important research on the material experiences of caretakers of children with food allergies and for participating in the 2021 Food Matters and Materialities Conference.
This podcast was brought to you by Carleton University. My name is Fleur Esteron and I was your host for today’s episode. Thank you to Kathy Dobson and Myriam Durocher, project managers and editors for this show as well as to Laura Bruno for the creation of the theme music. You can find more of Food Matters’ podcasts on the Food Matters website.