Students on a Floating Rock 008: Ethnographic Insights into the Legitimacy Work of Chronic Illness

On today’s episode, we have Jenna Kerr, MA Counselling Psychology Student at Western University. She’s joining us to talk about how qualitative research has played a role in her educational journey, her honours research, and her hopes for how healthcare providers can think more creatively about what it means to provide care.

Please note, this episode was recorded in summer 2025 and so minor details such as educational titles have changed since the time of recording.

Students on a Floating Rock is available to stream on your favourite podcast services — including Spotify, Apple Podcasts, Amazon Music/Audible, and more.

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TRANSCRIPT

Students on a Floating Rock voice-over 0:00
From UFV’s changemaking hub, this is Students on a Floating Rock, a student-run podcast dedicated to—

Regan Smith 0:07
—um, I actually think I can take it from here.

Students on a Floating Rock voice-over 0:10
Umm, okay.

Regan Smith 0:11
So if I had to describe it, then it’s basically engaging with changemakers to learn about the skills and mindsets needed to navigate these horrific times on this floating rock, also known as Earth.

Regan Smith 0:26
On today’s episode, we have the intelligent Jenna Kerr, a UFV psychology graduate and CHASI research assistant. She’s joining us today to talk about her recently published research paper and her future plans of doing her Master’s at the University of Western Ontario.

Regan Smith 0:42
Okay, Jenna, it’s lovely to have you here.

Jenna Kerr 0:46
Thank you for having me.

Regan Smith 0:47
Yeah, you’re welcome. Okay, so we start off every episode with a little bit of an icebreaker, and you’ve chosen yours, which is really good. I like it. So the question is, if you could turn any activity into an Olympic sport, what would you win gold in?

Jenna Kerr 1:02
I thought long and hard about this, and I think I would probably win gold in not texting back in a timely manner.

Regan Smith 1:11
Oh, that’s a good one.

Jenna Kerr 1:14
I do text back. It’s just usually I do that thing where you open it and you’re like, you know what you’re gonna say, I’ll answer later, and then I just don’t, it’s a problem.

Regan Smith 1:26
That’s a really good answer. Yeah, I do that all the time too, and sometimes I don’t even, I’m like, I don’t know how to respond, so I wait until the response comes to me, and it’s like, a good response, like [unintelligible] one. And sometimes that doesn’t happen. So people are waiting like, three days.

Jenna Kerr 1:43
Yeah, I don’t ever forget about anyone—

Regan Smith 1:45
No

Jenna Kerr 1:45
—they’re always on my mind. It’s just, yeah, it’s an issue.

Regan Smith 1:49
But it’s also like, I feel guilty too, and I don’t respond so quickly, because then it’s like, also always on my mind, of like, oh, yeah, I need to get back to them. But I never do a few days.

Jenna Kerr 1:59
Yeah, I’m really good at that.

Regan Smith 2:01
Okay, mine’s a lot, mine would be like along similar I guess, I think I’m really good at awkward situations. So just like starting them, or like being in them, I think—

Jenna Kerr 2:12
Starting them…

Regan Smith 2:13
—yeah, I think I can sometimes be an awkward person. So I say that’s what I would win gold in. I definitely think my sister would agree.

Jenna Kerr 2:26
I think you have this ability to turn situations around really quickly. I think you’re a good conversationalist. So I can see that.

Regan Smith 2:33
Just to give everyone some context, Jenna works at CHASI with us, so I’ve known her for about a year. So when we’ve been working together, I’ve had the chance, I guess, to get to know all your different projects. Can you tell me a little bit about what your like projects you’ve been on, and your academic journey throughout like, UFV?

Jenna Kerr 2:52
Sure. So I started at UFV in… like, right after high school in 2018 and I, I think right from the get go, I knew I wanted to do psychology, so that was I just was on that track to do Bachelor of Arts in psychology. I did my minor in sociology, and near the end of my degree, I decided to do the psychology honours program that they offer here at UFV. So that involved doing, like, an independent research project, an original research project, and then writing up a thesis about it. So that was kind of one of my first introductions to doing research.

Jenna Kerr 3:34
I’ve also done several work studies and practicums like over the course of my studies, while I was at UFV, the first research assistantship that I had here at UFV was during like, I think was my third or maybe my fourth year. I was here for five years, as a student, that was through the Center for Experiential and Career Education. So that was a project looking at lived experiences of CAS registered students—students registered with the Center for Accessibility Services (“CAS”)—and I was hired on as a research assistant who was CAS-registered like I was CAS-registered myself. So that was really interesting. That was a mostly qualitative project.

Jenna Kerr 4:15
That’s actually how I heard about CHASI in the first place. I think some of some of our participants were involved with CHASI, so that was really cool experience for me. And then I ended up doing an extension of that project as a video editor, creating digital resources based on interviews I had conducted for that project as a separate work study. I did a research assistantship near the end of my degree with Dr Michael Corman, working on a project related to—it was an institutional ethnography looking at the process of becoming a paramedic and the work that’s involved in that educational experience, and like the practicum experiences that paramedics have that was really amazing experience for me, alongside the honours project that I was doing around that time, and I’d say maybe six months or so after I had finally finished all my stuff, I landed here at CHASI.

Regan Smith 5:01
I just wanted to add you recently became a published academic author, right?

Jenna Kerr 5:23
Yeah, I recently had an article published. It was based on the work that I did for my honours project.

Regan Smith 5:31
Oh, cool. Could you tell us a little bit about that? Because I read a little bit about it, and I thought it was really cool.

Jenna Kerr 5:36
Okay, yeah, for sure. Just to give a little bit of background about the project that I was doing. I was interested in the experiences of Canadian women who have fibromyalgia. If you’re not familiar, I’ll try to give like a brief summary of fibromyalgia. But fibromyalgia is essentially a musculoskeletal condition, chronic pain condition that involves widespread pain with a lot of other symptoms, but chronic pain is kind of the hallmark of fibromyalgia, and it’s considered to be sort of like an invisible illness or an invisible disability.

Jenna Kerr 6:19
So there’s a lot of controversy surrounding that diagnosis. It’s sort of a contested label. Historically, there’s been a lot of debate academically and also in medical spheres as to whether fibromyalgia is a legitimate diagnosis or condition. There’s more of a consensus now about neurological underpinnings and things like that, but there’s a long history there of people being dismissed. So I was interested in that. That interest came about through my own experiences having a chronic pain condition. I don’t have fibromyalgia, but I had heard a lot about that issue surrounding fibromyalgia in particular, so I chose to pursue that direction, and I looked at the issue by participating in a digital ethnography or online ethnography.

Jenna Kerr 7:12
So I, as a researcher, joined a private Facebook group created by Canadian women who have fibromyalgia, and I observed the space, kind of as you would if you were a member of this group, with their knowledge of me being in the group. And then I interviewed several members, looking at kind of the work that these women are doing behind the scenes in this private space to establish legitimacy in medical spaces. How do they advocate for themselves? How do they cope with a contested condition, this invisible thing that is so present in their lives and that is often overlooked? So that was kind of the focus there. And the thesis was quite long, but I was able to extract, kind of the key findings and write up a paper about that.

Jenna Kerr 8:09
So what I ended up focusing on was this concept of legitimacy building work that I was observing in the space. So, like I said, the space was sort of functioning as what you might call like a backstage environment, to borrow some concepts from [Erving] Goffman, as opposed to like a front, front stage, performative kind of space where you’re performing the role of patient, for instance. So it’s a backstage, private environment where they’re doing some of this preparatory work, legitimacy building work, to equip themselves for medical encounters.

Jenna Kerr 8:46
Yeah, through that, I kind of came up with this concept of illness literacy, where the women in the space were trying to build, yeah, this, you hear this term sometimes, like, I think it’s health literacy, like having knowledge of behaviours and strategies and resources for maintaining our well-being, but I was sort of seeing like the flip side of that, like all this knowledge acquisition around what it means to be sick and what it, what fibromyalgia looks like, what it is, what it isn’t, overlapping conditions, things like that. So building that illness literacy, mastering biomedical discourses and language that will be taken seriously in a medical environment, that’s illness literacy.

Jenna Kerr 9:31
And then there’s also, like the identity work is another form of legitimacy building where people are coming to terms with the ways in which their identities shift when illness, chronic illness, chronic pain, has a, you know, ongoing presence in their lives and kind of the moral work that’s involved too, in being able to trust themselves and who they are when something that they’re experiencing is not being taken seriously, that sort of thing.

Jenna Kerr 10:00
So there’s a lot of moral underpinnings to that, getting that biomedical recognition and building that legitimacy. So that was really long-winded, I think, but that’s what my paper is about. So if you’d like to read about it, there’s about 9,000, 8,000 words. I could talk a lot more, but I will stop.

Regan Smith 10:20
No, I love it. It’s very cool, because it’s also like, I don’t know, I don’t think it’s too common, though. Also just seeing how, you know, like, it hasn’t been studied for so long, and people are now more like looking at online spaces to see how people interact with each other. That’s like, whole nother thing of like, when people interact with each other, like face to face, or in a room, it’s like, okay, you got these social signals and all that. But like, when it’s online, it’s like, different, and that’s a whole like, I guess, different and newer way of studying, I would say.

Jenna Kerr 10:53
Yeah, there’s so much interesting literature around it. Things are changing so quickly in the online space that I think it’s hard for research to, like, stay caught up. So a lot of the work that I was looking at in terms of developing, like, methods and stuff was from, like, the 90s, and so we’re talking about, like, how do you study a forum, like, forums that don’t exist anymore, or, yeah, blogs, things like that that aren’t as prevalent now, there was a lot of literature about how to study those spaces in terms of digital ethnography. I actually based my method around something that’s called like netnography, which is, it’s really interesting too.

Jenna Kerr 11:32
There’s a lot of debate in that that online ethnography space about whether or not you can treat online interactions as like a real interaction, like compared to face to face interaction. So in netnography, it’s like a particular version or philosophy of doing online ethnography. We’re acknowledging or regarding online interactions and online spaces as like an entity in their own right. It’s not like an online manifestation of real life. It is real life, like it’s a real community. It just happens to be online. So interesting.

Regan Smith 12:09
It really is, and it’s also like, because I don’t know, maybe you can speak more on it, but people, I guess, present a different front or online sometimes than they do in person, just because they do have that security of, like, hiding, I guess, behind a screen, or maybe not so much as hiding, or just like still reality, but like a slightly different reality.

Jenna Kerr 12:34
Yeah, and then I think there are also, like, the affordances of the, of a private online space, or, like, an anonymous online space. So if you’re going on Reddit, even though everything’s like, publicly available, you could go read anybody’s conversation on Reddit. Most of them have, like, a username that doesn’t, isn’t identifying them. So people are having really, like, open discussions on Reddit. And then in the case of this private group, a lot of people did have their real names because it’s Facebook, but it was private. Private in the sense that you had to complete a form. I don’t know if you’ve been a part of a Facebook group, but you have to fill out a form, and then the moderator and admin have to approve you.

Jenna Kerr 13:15
So it’s private in that sense. So people were like, more open, and there’s also you can post anonymously if you choose. So I think that allows people to be more open. Yeah, the way that we perform online is sometimes maybe different or more hidden, because there’s that anonymity. But I also think in this case, when it comes to maybe like navigating the healthcare system, sometimes we see that people are doing that in real life, where their online presence is more authentic to what’s happening, and their in person, front stage presence is more like strategic, because they have to get what they need. So you can’t always be honest if there’s, you know, skepticism coming from providers things like that.

Regan Smith 14:03
So the article that’s published you did, I guess there’s another author.

Jenna Kerr 14:09
Yeah.

Regan Smith 14:09
That was your supervisor?

Jenna Kerr 14:11
That’s right, Dr. Carey DeMichelis. So the paper is based on the thesis that I wrote from this research project, but the paper itself is kind of like a collaboration between Carey and myself. So my, you could say that, like my thesis, was sort of like the skeleton for it, and then we expanded on it. So some of the analysis in the paper goes beyond what was originally in my thesis, because we wanted to just pick a segment of it, that two-part legitimacy building thing that I mentioned was the focus of this paper, and then we expanded, we expanded the analysis together. So Carey played a huge role in putting the paper together. So yeah.

Regan Smith 14:52
As you talked a little bit about with, it was your honours project, right? Yeah. So as you talked a little bit that you used ethnography for that. Could you tell us a little bit about how it has given you, like the tools to kind of create system change in society, or at least become aware of what system change needs to happen?

Jenna Kerr 15:11
Yeah, that’s a good question. I really like ethnography. I like qualitative methods. I really like qualitative methods, critical qualitative research in particular, and I think ethnographic research lends itself to a more critical kind of approach, quite nicely. But yeah, I think having used ethnography for the honours research that I did, and also having done some work for one of my previous RAships that was institutional ethnography, which is slightly different but similar in terms of the work that you’re doing to gather your data.

Jenna Kerr 15:53
Having done that, I think what I’ve learned and what I appreciate about ethnography is that we can get a much richer sense of what’s going on for people when we ask them about it directly and we hear about it in their own words. I really value Quantitative Research Statistics. You know, we need that. It’s important. I don’t want to devalue it in any way. But I think that what we find there about people on average can really be enhanced by understanding what is the case for people on a smaller scale in greater depth.

Jenna Kerr 16:31
So for instance, speaking to some of these women in this Facebook group, I got a really clear sense of what was going on for them in, like, individual clinical interactions, what was happening between them and their provider. And I started to hear some trends, but also, yeah, like, everybody’s experience was a little bit unique. And so yeah, I think it just gave me a more well-rounded sense of what was going on for people and how their overlapping challenges in systems for them, whether that be the healthcare system, or for many, that was like social assistance, so other social services, it wasn’t just about healthcare. A lot of women in the group were low income. I think we see typically too, like that individuals who are lower income tend to be affected or among demographics that are more commonly affected by chronic illness and chronic pain.

Regan Smith 17:34
Okay, so I know for system change, there’s a lot of you have to understand where people are coming from in all different perspectives, and like you have to be able to put yourself in everybody else’s shoes. So it takes a lot of, I guess, having empathy and understanding to know, okay, these are all the problems, what, I guess, can be done in the system, or what is going on in the system that, like are causing these problems or can be adjusted to fix these problems?

Regan Smith 18:08
And I don’t know, I know from my very minuscule experience with ethnography, it’s a lot, I guess, kind of similar to that, understanding, I guess, especially for institutional, understanding the system and also how people are working within that system.

Jenna Kerr 18:29
Yeah, the process and yeah, like one thing I really like about institutional ethnography, I think this is a like, actual language that Dorothy Smith uses. Dorothy Smith as the sociologist who created institutional ethnographies. She talks about looking at everyday actualities of life. So what’s actually happening for people? I think that that gives us a better sense of not just the outcome, like what’s going wrong for people, or how much money are they costing us, or how much money are things costing them? Like, we get a better sense of what’s going on for people like the work that they’re doing. Like, what kind of work, preparatory work do they have to do to show up to the interaction, to talk to their medical provider, stuff like that. We get a better sense of how they’re navigating these systems.

Jenna Kerr 19:17
And so then I think it helps us to maybe be more imaginative in terms of how we might adjust these systems. I think it was definitely affirming for me listening to what these women had to say. It affirmed my belief that when it comes to systems change, we definitely need to like, expand our lens to look more upstream.

Jenna Kerr 19:42
Like, how can we be more proactive? So in that case, that like, how might we educate providers on discrimination related to gender in the healthcare environment, like women and like non-binary patients for instance are, trans patients are a lot more likely to face like, come up against these obstacles in getting what they need. So if we can, like, maybe educate a little bit more, how can we be more proactive in making sure that this kind of work that people are doing, this additional burden that people are living with on top of existing illness burden, isn’t, you know, happening to the degree that it is?

Regan Smith 20:29
I mean, I guess I’m kind of asking you on the spot too. System change is, like a really complicated thing, and it’s hard to completely grasp as well, I don’t know. And it is, there’s just so much, I don’t know going on to it? I would say, like, there’s lots of pieces to it.

Jenna Kerr 20:46
And we live in a neoliberal society, so we’re really focused on efficiency, cost effectiveness, things like that. You have 15 minutes to tell, tell somebody about what’s going on for you, and you get to talk about one thing. So if you, if you go into that space with such limited time, there’s, I think, for a lot of us already, a lot of pressure. And then if you go in knowing that what you might have to say is not going to be taken seriously, I think the stress goes up. Yeah, it must. And then, so you really need to know what you’re going to say. You really need to be prepared.

Jenna Kerr 21:19
And interestingly, something I’ve done outside of like my education and my work, is I’ve volunteered for a while as a health coach for Pain BC, so that’s a resource for people who have chronic pain. And almost every single client that I’ve had has spent some portion of our time together and our sessions together, focusing on, how am I going to show up for this particular appointment that I have? I don’t know, like, what am I going to say? Because they’re not going to take me seriously. They’re not, I’m not going to get what I need, and I’m scared, I’m anxious about this. I’m going to say the wrong thing. So we’ll have, like, mock appointments.

Regan Smith 21:56
So yeah, and it’s also, I guess, with chronic pain and like quite a few things, correct me if I’m wrong, but a lot of the times, it’s people are coming into doctor’s appointments and they’re stressed about that, but they’re really fighting, I guess, this whole system and just society’s view of what chronic pain—or what pain is.

Jenna Kerr 22:19
Yeah, in the case of something like fibromyalgia, it’s not something that you can see, and that’s something that we write about in this article as well, is that for everyone, whether your pain is chronic or acute, or you have, you know, some sort of like, there’s some pathology there or or not, we can’t see other people’s pain other than that, maybe the way that they express it on their face, but we can’t physically see it. For things like fibromyalgia in particular, there’s actually no, like, test or biomarker. There’s no scan that we can do to see fibromyalgia, so it’s invisible in like, a biomedical sense, too. So I think that that raises the stakes, because you’re going in, and for some people that are going in, they actually don’t even know whether they they don’t have a diagnosis at all, but maybe it is fibromyalgia, you know what I’m saying? So like, you have something going on that no one can see it’s very real for you. And even you know the people that you’re going to for help can’t quite identify that. It’s tricky.

Jenna Kerr 23:23
And so there’s that piece, and then there’s also the issue of the pain being chronic. There’s this quote in the paper from a philosopher, Anna Gottlieb, that I really like, and we included, and I’m not going to say it properly, but she talks about, essentially, how when someone is ill or in pain or injured, we would assume that they would eventually get better, and if they don’t get better, then they’ll die. So these people aren’t getting better, and they’re not dying. They’re in this like liminal space, like you’re not sick in the traditional sense, but you’re not well, so you’re just like in the limbo, and it’s like really strange place to be.

Regan Smith 23:48
So all this research that you’ve been doing—I am still my undergraduate, so I’ve not gotten to graduation, I guess yet, obviously—has it helped you getting into a master’s program?

Jenna Kerr 24:11
Yeah, I think that having this research experience was really important for getting into my program, and that’s not going to be the case for everybody. I don’t think that research experience is always essential, but I applied to a… what’s called a Scientist Practitioner Program in Counseling Psychology. That’s also a model that you’ll see in things like clinical psychology, where the focus is on research as well as clinical skills. So for me, it was important to have that experience. It was nice to do the honours project, because I got to see a project through from start to finish, from ethics to reporting, and then eventually publication.

Jenna Kerr 24:48
And the same thing happens here at CHASI, so I’ve just been able to build on that. I’m seeing these projects through from the beginning to the end, I think, has been huge, and that’s exactly what I’m going to do when I get there. Research experience can be, can be really important, and even if it’s not something that you need, I think it’s something that can make you stand out, and it’s good experience to have. And doing research is fun.

Regan Smith 25:10
Research for life.

Jenna Kerr 25:11
Yeah, I didn’t think I would like doing research going into a psychology degree. I think that’s common. People come into psych and they’re like, I have to do stats and research methods, what the heck? I thought this was going to be about, you know, like counseling and the mind, but it’s a lot bigger than that. The social sciences are a lot bigger than that. And I actually love doing research.

Regan Smith 25:33
So through your research that you’ve done, you kind of, I guess, found a lot of gaps maybe, or problems in society that are not working right now? Is there anything that you specifically would like to see changed that you’ve learned of throughout your academic journey?

Jenna Kerr 25:56
I think that there are a lot of things that I’d like to see change, if I focus on my interest in kind of the counseling and also, like the healthcare realm, I would say I’m really interested in looking into what it might look like if we expanded what it means to be a care provider. I think a lot of care providers, whether they’re like medical professionals or clinical counselors, dental hygienists, all the allied health professionals. I think that our work is really constrained by the system that we’re working in. And maybe if I give an example that will help me articulate what I’m trying to say.

Jenna Kerr 26:42
For instance, doing counseling with youth at the Chilliwack Youth Health Center, or doing coaching with adults with chronic pain through Pain BC, I have had several experiences where someone will come to me with a challenge that I really think is rooted in more of like a social issue, and the way that a lot of health professionals or clinicians are trained to address these things are very individualistic. So if you came into the doctor and you said that, you know you’re really struggling with eating well, and the advice you’re given is to follow like a food guide or something like that, or to change your habits, and here’s what it might look like if you ate more healthy. That’s a lot easier said than done when we start thinking about things like income or what’s available to you, what’s accessible to you.

Jenna Kerr 27:47
Or you know, in like a counseling context, I’ve had people come to me and say that some of the mental health challenges that they’re experiencing are related to the treatment that they’ve received from other providers because of their gender identity, their gender expression, their race. It feels kind of meaningless to me sometimes, or like pacifying to tell people that they need to think differently about their circumstances or to make a change in their life, or to practice mindfulness.

Jenna Kerr 28:24
I love mindfulness. I think it’s really valuable and important for a lot of people. It’s evidence-based, just like cognitive behavioral therapy, not hating on those things. But I also think there’s like, a lot of weight on evidence-based changes, behavioural interventions. How can you make change, and how can you think about things differently, behave differently in order to improve your life, but when you’re dealing with like social these like social barriers to well being, it just doesn’t feel like it’s enough.

Jenna Kerr 28:52
And so I think like that for us involves thinking more creatively about what it means to provide care for people, and maybe that means like advocating with local like, you know, writing to your local government, or looking into connecting people with, like, a legal advocate. I don’t know, things like that. I’m still figuring out what that looks like, too, so I don’t really know, but it’s just like an issue I’ve encountered again and again, and it used to be kind of disheartening for me, like I didn’t really know what to do about it, but I think it’s become an area of interest, so I’m hoping to look into that more in my master’s and see what we might do there.

Jenna Kerr 29:32
That’s not an original idea, like, there’s a lot of work being done in that area. There’s an interesting book called Decolonizing Therapy, which I think people who are interested in those ideas would would like. That area is developing, but I’m interested in looking at that type of thing.

Regan Smith 29:47
Yeah. I mean, that’s all really interesting. So thank you, Jenna, for coming in and telling us all about your studies and just all your thoughts and everything like really cool just to get, I guess, your perspective, because I’ve never, I guess, stepped foot in that kind of world, I would say, like I’ve done research, but not on maybe chronic pain or the extent of it, of ethnography that you’ve done before, and so cool that you’re a published academic.

Jenna Kerr 30:18
Thanks.

Regan Smith 30:18
So it was a pleasure having you.

Jenna Kerr 30:20
Thank you. You were my favorite people to talk to. I had a good time.

Regan Smith 30:24
Yay.