(4-minute read)
April 2024
By E. Walczak, Workshops & Programming Assistant, Family Care Office, University of Toronto
Joanne Lieu, a PhD graduate from the Ontario Institute for Studies in Education at University of Toronto, has just published her study: The Experiences of Women-Identifying Undergraduate Student Caregivers. The Family Care Office had the opportunity to interview Joanne about her research.
Can you please summarize your research?
My thesis is on the experience of women-identifying student caregivers at a postsecondary institution. I conducted ten qualitative interviews with postsecondary student caregivers. In my study, I found that their postsecondary experiences were shaped by their interactions with their institution’s staff, faculty, peers, and care recipients. This was in several ways: academic, social, financial, and their decision-making process regarding their life choices. My thesis also contested the definition of student caregiver. The other part of the thesis was the participants’ advice for current or future caregivers.
How do you define carers?
Initially, in the study, I defined a carer as someone helping or providing care to a care recipient with a long-term health condition, whether physical, mental, or aging-related problem. Through my study, I found many dimensions to understanding who a caregiver is. First, it’s very relational and very values-informed. There’s an emotional piece to it that wasn’t in my definition. Second, I hadn’t considered how people understood time. Several participants in the study shared how ‘short-term’ caregiving was still caregiving and the intensity of the care responsibilities should be taken into account.
My definition was very technical; I didn’t capture the hardship of caregiving. So, for example, there’s role strain and role “burden,” which I say in quotation because that’s also a critique that came up. It’s not a burden to care for someone, but for some folks, it is. So, it’s very complicated. However, the dimension of emotional labour, strain, and time-piece are all parts of a caregiver’s experience.
I dedicated a whole chapter to exploring ways to redefine who a caregiver is since I had yet to come across a definition encompassing all these factors at the time of my research.
Did you change your definition at all? How did the role of caregiving take shape throughout your research?
The definition I gave you is what I started with (adapted from the General Social Survey), but then I dedicated a whole chapter to different factors to consider. I didn’t change the definition, but I acknowledged that for future research, instead of defining a caregiver in one sentence, there could be other ways of identifying, including through question prompts. There are different ways of getting to who a caregiver is without giving a one-sentence definition.
Please describe your educational journey and research with U of T?
I’ve studied at U of T for almost a decade. A third of my life, I guess, has been at U of T. I did my undergrad here, originally in sciences and social sciences/humanities. I did a mix of everything in my undergrad because I couldn’t decide what I wanted to head into. I also did my Bachelor of Education because I thought I wanted to go into education at the K-12 level. I later discovered I wanted to learn more about educational policies, so I did my master’s in education with a research component. I found that research didn’t just exist in a lab; it could also be done through interviewing people and qualitatively understanding the human experience. During my master’s, I did a research paper on queer students accessing mental health services on campus, and I realized I loved to research and just graduated in the past November with my Ph.D.
What motivated you to research carers?
It’s been a convoluted journey; I think there have been three factors. The first was a microbiologist. I went to a TED Talk hosted by an institution. The speaker was a microbiologist and a family physician. He spoke about how he noticed in his practice that students were accompanying their parents or other relatives to some of the appointments and the unspoken labour you have when you’re in that position. That clicked for me initially.
When I did my master’s and was looking at the experiences of queer students accessing mental health services on campus, what I didn’t realize at that point was that a lot of them were caregivers themselves. And so, it’s something that I didn’t know initially, but once I made that connection, it made sense that this would be my next step to understanding the student experience.
Third, my peers were very encouraging in helping me figure out how to understand my research. I had the idea for a while and was trying to see how I could answer the questions I wanted to have answered. They gave me a lot of encouragement and guidance.
What did you learn from the carers involved in your study? (main research findings, personal learning, etc.)
I learned that everyone’s caregiver situation is so different. I resonated with the fact that it’s costly—whether emotional, physical, or social. Looking at the social aspect, caring is a verb, an action, and has a cost. Care also exists in a normative framework and obligation; sometimes, you fall into the role without realizing the normative framework behind it. Daly and Lewis cover a lot in their work.
Being a caregiver isn’t necessarily a physical identity. Unless you converse with someone or connect with someone who shares their caregiver identity, it’s an invisible identity. Care experiences are complex and complicate access to services and programs, contributing to a lack of community.
One thing that came up was that much learning happens despite being a challenging role. You learn what you might need as you get older by navigating complicated systems, like the medical system, when being present at medical appointments for the care recipient. So, skills forge as a result, including when to delegate tasks.
What advice would you give to carers?
Advice-wise, it varies. The first thing is that many people are caregivers without realizing it. It’s not always instantaneous; it doesn’t happen overnight sometimes. It’s just that tasks add on, and eventually, you question your capacity to do all the tasks. So, it’s realizing what you need to help support yourself while supporting someone else. It’s a lot to figure out what you need and what someone in your life needs.
Sometimes, it’s having friends who are comfortable dropping off groceries if you can; sometimes, it’s asking for extensions and not feeling guilty about it; it’s completely okay to have different circumstances and navigate your responsibilities. Sometimes, there’s guilt about not being a full student because you have so much to do. There’s so much emotion tied into that, too—trying to be a “real” student and a “real” person providing care.
What impact do you hope your research will have on the experiences of carers?
There are a couple. More policies need to be developed to support student caregivers. This could be informal and formal policies, such as when assignments are submitted or flexibility of delivery of class learning. Another hope is to raise awareness for everybody; since the pandemic, the topic of caregiving has come up a lot more, and it has moved forward, but there needs to be continued conversation. The caregiving that started during the pandemic, or before, hasn’t gone away; it’s been increasing, and many people continue to provide care. More awareness of students in caregiving roles is also important.
What were some of the biggest problems carers had in balancing student and carer life in your study?
There were many. One thing that came up a lot was that the caregiver’s role had taught them a lot, but the care recipient stressed them. This is particularly true if they’re first generation and the care recipient doesn’t understand what goes into being a student. There’s an assumption that because you’re a student, you have so much time, and you don’t have much responsibility.
Guilt was a common theme about getting assignments in on time, missing booking an appointment, or not having the capacity to be there for friends. It’s hard to unpack; it’s layered in identity and culture. The other part that came up was institutional assumptions. There were moments when professors were very understanding and flexible, and it was great to see those stories, but there wasn’t always understanding and patience.
What was the most surprising part of your research?
One of the most surprising things for me was the number of folks in the study who were caregiving to friends, family members, or loved ones who were not in their immediate space but perhaps in a different country or time zone or hours away by car. That is another layer of difficulty in navigating caregiving. If you’re in different time zones, you may encounter conflicting schedules: you’re up late at night trying to provide care, but throughout the day, you’re planning your day, too.
I conducted this study at the height of the pandemic, but I imagine there were many issues with getting back and forth compared to now. Even now, several caregivers are providing care remotely, and the mental load they are taking on is heavy.