The sixth episode of Research Chat features Laura MacGregor, who successfully defended a PhD dissertation in Human Relations at Martin Luther University College and Laurier in 2019. Her interview on Research Chat focuses on interconnection between mothers and children and how this interrelationship informs maternal caregiving decisions when caregiving complex-care children.
The episode features:
WLU Research Chat S01E06
SPEAKERS
Laura MacGregor, Shawna Reibling
00:00
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Shawna Reibling 00:04
Welcome to Research Chat, a podcast where students share their experiences at Wilfrid Laurier University and their current research findings. I'm your guide Shawna Reibling, a knowledge mobilisation officer at Laurier and in each episode, I will interview a Laurier student who is exploring a specific research passion through their graduate research work
00:28
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Shawna Reibling 00:36
Please tell me your name and the program you completed.
Laura MacGregor 00:39
My name is Laura McGregor and I completed the PhD program in Human Resources at Martin Luther University College, which is part of Wilfrid Laurier University. I was supervised by Kris Lund, who is faculty at Luther. I think the first and most significant reason I chose to complete my doctorate at Luther was that Luther offered considerable encouragement for students and, myself specifically, to draw on their lived experience. So their personal everyday experiences to form the foundation of scholarly work or their particular scholarly work. And that was particularly important to me since I was looking at a lot of my own journey as a parent to inform my research. And I think along that vein, the other reason Luther was so attractive was that Luther encourages students to bring their whole self to their academic work. So not only was I encouraged to look at my own life and my own personal experiences to inform my research, but they acknowledged and understood that I had some extraordinary challenges as part of my everyday life while doing academic work. So in particular, in my case, I was caring for a complex care child. And so they offered me both support, but also the flexibility to continue to juggle those demands while pursuing an advanced academic degree.
Shawna Reibling 02:18
Looking back on your first day in the program, what advice would you give yourself?
Laura MacGregor 02:24
I will admit, I chuckled a little bit when I read that question. I think the advice, if I could reach back and speak to that student, would be quite simply, "you can do this." Doctoral work is a long and daunting and often isolated journey. And I think I spent the first little while being fairly convinced that the university would figure out that I didn't have the stuff to do it. And I did. And so that advice I would give to my former self was just take a deep breath, and you can do this.
Shawna Reibling 03:02
How has your experience in the program influenced you personally and professionally?
Laura MacGregor 03:08
Significantly in both regards. These days professionally, I work with students. So I've recently accepted an associate professional faculty position. So I have the opportunity to teach both undergraduate and graduate students and I really enjoy that. And so I see my work and my journey, as a doctoral student at Luther, as giving me the tools to hopefully equip the next generation of people who will work with people with disabilities, and that I'm part of that ongoing journey of asking important questions, and figuring out some of the best ways to create a more inclusive world for people with disabilities and for the people who care for them. And personally, I think what I found most meaningful is that as a mother navigating, often systems that were not always welcoming to mothers, it gave me this wonderful opportunity to really consider my own personal knowledge and power, and to carry that with me in ongoing involvement with the medical establishment, most notably but other environments as well.
Shawna Reibling 04:30
What qualities or practices have helped you so far in your educational journey?
Laura MacGregor 04:36
I think, stubbornness, this idea of just sticking with it. I think many of us in doctoral work, learn pretty early on that doctoral work is, has a lot to do with your willingness to just persevere. It's a long journey, and it involves a lot of work. And I'll have to add to that, that I think that part of the great value of my experience at Luther is that because Luther allows students, and encourages students, to focus on a personal area of interest, there's that innate motivation to see the question through. So you're doing work that personally matters to you. It's personally relevant rather than work that may be contributing to a project that you're only peripherally involved with. And I don't want to minimise that experience, because that can be an equally wonderful experience. But there's something really powerful about asking a question, and being encouraged to see it through to the answer.
Shawna Reibling 05:35
I suspect you're not going to be the first person who says that stubbornness is a quality that is sought after in doctoral students.
Laura MacGregor 05:43
Yeah, I, the sort of the notes I had written my to myself was something along the lines of, it really doesn't have a lot to do with smarts. It has a lot to do with just sticking with it.
Shawna Reibling 05:54
Your research explores the interconnection between mother and child, and how this interconnection informs the role of mother as an advocate for the needs of a disabled child. Could you tell me what led you to explore this research question?
Laura MacGregor 06:10
There's actually a specific moment that I can trace this question back to. And the story goes that I was meeting with a physician along with my son. So my son, at the time had significant disabilities, and he was very medically complex. He was also nonverbal, so he couldn't speak to the physician about what was going on. And I had become increasingly convinced that my son, Matthew, was in pain, and we were struggling to manage that pain. There were many reasons he could have been struggling with pain, but I was pretty sure he was in pain. And I knew that the drugs we were using, which were just over the counter drugs like Tylenol, weren't doing a very good job of managing the pain. So I met with a physician along with Matthew and I advocated for better pain control. So specifically, I was looking for a PRN drug that I could give as needed, that was stronger than over the counter drugs, so probably a narcotic. And the physician was really uncomfortable with prescribing this drug, because the physician didn't understand the cause of Matthews pain. And we were attempting to figure that out, but we didn't have a good answer at the time. And so he didn't, he didn't want to prescribe pain meds. And I became a little bit frustrated with this moment and I said to the physician, that his inability to diagnose my son's pain should not be the cause of my son's suffering, and that we had an obligation to address his pain. And the physician didn't really respond to that, other than as he left the room, he turned and he handed a script prescription to me and he said, "Well, maybe by giving your son this drug, I will calm you down." And sort of the lack of his willingness to sort of treat the pain aside, what became very interesting about that moment is, as I reflected on it later, the physician was basically saying, by doing something to my son's body, he was potentially influencing my body. And that's a really interesting message coming from medicine, a profession that tends to align itself with this sense of what we call Cartesian Dualism. So this idea that the body is a pretty discreet and bounded thing, and that bodies are separate. And so this idea that our bodies were intermingled, so much so that he could influence one body by doing something to another body intrigued me. And I thought it was a particularly interesting question in the case of fairly complicated kids who actually couldn't speak to their wants and needs. So this one moment, became something I reflected on as I was going through the earlier stages of my doctoral work and trying to figure out a question and I became very interested in the idea of of exploring it further, particularly with regard to how mothers experienced this interconnection between their child and themselves.
Shawna Reibling 09:26
Through this research, you've heard about many, many interactions families have had with the Canadian medical system and medical professionals. Can you tell me about any common themes encountered by these mothers and families?
Laura MacGregor 09:39
My primary focus was simply to understand this experience of interconnection between mothers who are caring for complex kids, who couldn't talk about what they needed or what they wanted, and the mother themselves so how this this interconnection played out, because it wasn't well represented in the literature and I wanted to better understand this experience. This idea of navigating the medical system and using this sense of interconnection, during their experiences within the medical system really emerged, not necessarily surprisingly, I did ask them about the experience of speaking to people, professionals, with regard to their experiences. But I was surprised by the fact that medicine was repeatedly a focus. So just that first thought, that the idea that the medical system and medical professionals emerged as such a significant finding, was interesting. And so the mothers frequently talked about their experiences. And I don't want to suggest that there weren't mothers who shared positive experiences, there certainly were, there were mothers who talked about working with health professionals, most notably physicians, where there was a real collaborative relationship that was focused around the needs of the child. And in most cases, that was a health provider with whom they had a relationship. So the healthcare provider had developed a sense of, of the mother and, and the mother's engagement with their child. However, most mothers in the story talked about working within the healthcare system in such a way that their intuitive maternal knowledge was often ignored or dismissed and many found that very frustrating, and many discussed the fact that it compromised their child's care.
Shawna Reibling 11:49
In your interviews with mothers of children with intellectual disabilities and significant communication challenges, how did they describe their interconnection with their nonverbal child? And how did they deal with describing this to others?
Laura MacGregor 12:05
Yeah, and it's just a sort of a first comment there, the children weren't always nonverbal. Initially, I had planned to make that a requirement of the study. But after some consultation with people and friends in my community, many pointed out that some children may have words, and I use the word children bearing in mind that also adult children were involved in the study, they may have words, but they may not be able to use those words in a way that communicates their wants and needs. So for example, we may have a child with autism who simply repeats words over and over, or they may use highly codified language that requires some really sophisticated translations. So, for example, one child might repeatedly say "car in garage, car in garage." And that could mean any number of things like I want to go for a drive, or I'm really excited because dad just got home from work. Or a person or a child who repeatedly says the word "bad day bad day", could mean that you know anything from they're tired, they're hungry, they're disappointed because their favourite snack isn't available to something like, they're ill, or something is wrong and they need to be seen medically. So there were some verbal children, but their ability to express themselves was compromised. Mothers described this sense of interconnection using a number of words. The first theme that really emerged was that it was difficult to describe this sense of interconnection, because I was asking mothers to describe a relationship that happened beyond language that happened outside of words, but I was asking them to do it with language and words. So it was challenging, and they admitted it was challenging. But they also said, this is a real thing, like this experiences interconnection I have with my child, it exists and it's valuable, and it's real. So some of the themes that emerged were; mothers noted that it was mutual that they thought it was bi directional, it went both ways, so that the mother not only had a sense of their child, but the child had a sense of the mother. So a couple of mothers discussed the fact that when they were very, very ill, somehow the child's behaviour had shifted, and they were less demanding. Mothers use the word "sacred". They described it as this very privileged and very unique relationship that was very unusual and different from other relationships. And they noted that in some cases, it was very much confined to the mother, even when there was a really active and involved father or other partner in the life of the child. In all cases, these were straight women who are involved in traditional relationships, and they noted that this prolonged involvement with their child and their prolonged connection with their child, allowed them to develop this fluency, this ability to speak their child's language and to hear their child's language. And they also noted that this was intuitive. They used words like knowing and sensing and gut and intuition. So this was a very intuitive experience that was happening outside of traditional language and as a result, it was sometimes difficult to translate these experiences and this knowledge to other people. And the example that they most frequently used was the example of communicating the child's needs, or wants or, embodied status -so their healthcare status to- healthcare professionals,
Shawna Reibling 15:42
You write in your work, that you have a feminist understanding of the body. So that is complex, porous and interconnected and this describes the relationship between the mother in the child. Can you explain more about what you mean by that concept, and why it is important to understand it in the context of your work?
Laura MacGregor 16:03
Our current understanding of the body in our Western society is rooted in this thing we call Cartesian Dualism, and that traces all the way back to Rene Descartes. And he basically suggested that bodies were separate, and they were discreet, and they had boundaries. And in fact, he also separated the mind and the body. So first of all, I should point out that this the sense of Cartesian Dualism is generally seen as a more patriarchal view of the body. Whereas a feminist approach challenges that idea, and suggests that subjective experiences versus purely objective experiences, which is how sort of a more scientific understanding of the body would be rooted, are valuable, and that the body is complicated, and it can be made up not only of sort of additions to the body, so things like glasses and feeding tubes and wheelchairs, and the white cane for someone with a visual impairment can become part of the body, so the body is extended and becomes perhaps cyborg. But that bodies can be extended by other bodies so, a seeing eye dog becomes part of a person's body if they have a visual impairment. And the seeing eye dog helps them experience the sensory environment or move through their environment. And in the case of people with significant disabilities, particularly intellectual disabilities, other bodies, so their primary caregiver, often a mother can become part of their body. And so this understanding of the body really challenges this Cartesian sense of the body that says, here's your body, and it's, it's bound by the skin. And it's this, this mechanistic thing that we can understand and define and break down. All of a sudden, we're suggesting, or this feminist understanding of the body and a very postmodern understanding of the body is suggesting that, it's complicated, and that it's porous, and that experiences between bodies might inform other bodies, and it's extended by things and people and animals. And as a result, it really challenges this more boundaried sense of the body that that science and Cartesian Dualism endorses.
Shawna Reibling 18:29
A more complex understanding of the body really makes it personal. And one of the slogans that feminists have used as been that the personal is political. And that expresses the belief that personal experiences of women are rooted in a particular political situation sometimes related to gender inequality. Did this reflect the experiences of the mothers and children in your study?
Laura MacGregor 18:52
I think it did. So, again, one of the significant findings of the study that emerged, somewhat serendipitously, was this idea of the challenge of navigating the medical system. And if we stop and think about it for a moment, the medical system, the medical model, the scientific method, are based in fairly patriarchal ideals. And mothers are women. And they're navigating this fairly patriarchal world, this hierarchical world as women, and they're drawing on this sense of knowledge, female intuition, maternal knowledge, feminist or feminine, you know, feminine intuition, whatever you want to call it. And they're, they're using this information, this, this knowledge they have, and they've acquired in ways that are not valued by this more patriarchal worldview of the medical model. And as a result that I think became very challenging. And I think one of the important questions is, were the challenges the mothers are having linked to the fact that they were women who were drawing on knowledge that was, or that emerges from a way of knowing that is not valued in a particular environment? And because they were women, I think they were easily dismissed or worse, at times, they were painted or portrayed as hyper vigilant and helicopter mothers, which then I think gave professionals permission to ignore them. So I think we, they were just operating in different paradigms, sort of the medical model is this very patriarchal model that values information in that is gained in a very particular way. And the women were coming at it from a very different perspective, that turned out to be equally valuable in terms of the care of their particular child. And it got lost in translation, I think, in part because they were women navigating this very patriarchal structure. But I do want to sort of point out, there's a bit of a caveat here, and that the women weren't saying that the scientific method or the medical model were all bad in fact, I think many were saying that it did a lot of good in terms of the care of their child, but that they struggled, that that was the only way that knowledge was valued and that their sort of feminine knowledge, their mother's gut was also valuable and informative. And they wanted a system that was willing to include their knowledge in a meaningful way.
Shawna Reibling 21:39
Valuing alternative ways of knowing and addressing issues from different perspectives is something that's very difficult for our Western ways of knowing. And as different modes of knowledge get more valued within the system, both in the academic system and systems like the medical system, I think it's quite revolutionary that you made the statement, and I'll read it back to you, "Mothers intuitive knowledge of their children's bodies, was often accurate, even predictive, allowing them to read emergent concerns regarding their children's health." In some contexts, that could be almost magic that mothers know the issues that are related to their children, or they emerge from the sacred connection they have. So can you tell me why you think it's important that you made that statement in your work and can you give an example of why it's important?
Laura MacGregor 22:35
Sure. First of all, I don't think it's magic. I think this is very hard won knowledge. It's just happening in such a way that is not well understood within the scientific method. And I, you know, my first two degrees are in science. So I don't, I don't completely disregard the scientific method, I think it has great potential, and it does great good and evidence based practice is an important thing. And so I think that's one of the first things we need to, to sort of remind ourselves. It wasn't so much that it was predicted, because they didn't always know exactly what was wrong. But they did know that something was happening. And so... and they were able to identify it sooner, than than the medical model. So, they were able to say there is something happening in my child's body and I can tell because I have this very powerful connection with my child's body, and this very unique and sophisticated way of reading my child's body. And what was problematic is that they were they were getting this gut sort of sense this concern bubbling below the surface, before perhaps there was a manifestation that could be quote, quote, measurable or objectively seen by the medical system that was functioning within a very different paradigm. And they were able to do this many, many mothers told this story, it was a very significant finding of the study.
Shawna Reibling 24:07
And so as healthcare professionals struggle to understand and value that intuitive knowledge or reading of the body, and it resulted in compromised care at times, how did your study participants resolve these challenges or address them?
Laura MacGregor 24:23
Basically, in the form of ongoing advocacy. They told all sorts of powerful stories of the challenges they had advocating for their child, one mother identified concerns repeatedly with physicians and with health care providers for many, many months. In this particular case, the one I'm thinking of she was concerned about a diagnosis of autism. The child ultimately was diagnosed with autism, but it took I think, the better part of 18 months of constant advocacy, and eventually a self referral to a local children's treatment centre before she felt heard. Frankly, participating in my study, I think was part of their response. They wanted to be part of a conversation that explored their own knowledge and how it was valued or not valued or should be valued within these environments. And to be perfectly blunt, at times they weren't heard. And there were unfortunate consequences,a child, you know, didn't receive optimal care.
Shawna Reibling 25:30
How did families in your study respond to the refusal of health professionals to consider unconventional sources of knowledge to inform healthcare decisions?
Laura MacGregor 25:39
I think basically, they just continue to advocate and what they attempted to do was they, over time, learn to translate their experiences into language that was understood by healthcare providers. But that places a lot of pressure on already overextended mothers to to basically equip themselves with mini medical degrees so that they can navigate the system more effectively.
Shawna Reibling 26:07
What advice do you have for medical professionals to be more open to collaborating with these unorthodox sources of knowledge?
Laura MacGregor 26:15
I think the main one is that mothers, particularly mothers who are actively involved in their children's care, are experts and have valuable expertise that will add to care. And if we are all fundamentally concerned about providing the best possible care for these people, our children, that not listening to the mother's expertise, and giving it serious consideration, will ultimately compromise care. And so if I'm hearing the mothers correctly, I don't think they want to be in charge. But what they wanted is they wanted a place in the conversation, where their voice was seen as meaningful and valuable and was actively sought out. And that it wasn't, that their inclusion was not tokenistic. It was not "well, we'll touch base with mom, because we're supposed to do that", that healthcare providers were reaching out to mothers, because they understood that mothers had something important to offer and, as a result, they would be included in all meaningful health care conversations.
Shawna Reibling 27:24
Your son passed away recently. Given that your work is so closely connected to your experiences with your son and the community you've engaged in, how has your loss changed your relationship to your research into this work?
Laura MacGregor 27:37
It's a bit of a difficult question to answer. There's no doubt that, that my parenting of Matthew was both the foundation and the motivation for so much of my work, both my MA and my PhD emerged from my experiences parenting Matthew. And after he passed away, in the early part of the pandemic, I really struggled with what that would mean for my work, and for the future of my work. Was, did I still have a place in this conversation and ongoing research that was looking at the care of complex care children, if I no longer was the caregiver of a complex care child? I was worried that maybe I had lost my quote, quote, membership card, in the community and in this area of work, because my lived experience informs so much of my work, but also provided me I think, with connections within the community, so that there was this instant rapport with other mothers - we, we knew that we were we were talking to someone who got it. And I think that helped me when doing my research. But I think as the months have passed, what I now see this work becoming, is the legacy of honouring my son and honouring the journey I had with my son, but also living out a commitment to not only my son and this experience, I had parenting, Matthew, but also sort of the community of us mothers who are caring for complex children. And is this some way of, of continuing to do the work that I think is needed within this this community of of women who are shouldering extraordinary challenges and significant caregiving responsibilities? So a bit of honouring my son but also demonstrating an ongoing commitment to this very vulnerable and very invisible community.
Shawna Reibling 29:38
How can other family members support the mothers and caregivers of disabled nonverbal kids?
Laura MacGregor 29:44
This idea of just valuing their expertise looking to them to be a valuable source of knowledge. But I think the other thing that's important is to appreciate the challenge of caregiving. Caregiving is something that happens often behind closed doors, usually women are performing it, and we're performing a lot of intimate care, even taboo care, so toileting, bathing, those sorts of things we tend not to talk about. So the nature and the demands of caregiving are sometimes poorly understood. In particular, because our society doesn't like, we're not fans of, we don't enjoy conversations about suffering and challenge. We like to paint caregivers as saints and superheroes and these wonderful women who have capes, who wear superhero capes, and fly through the day doing these wonderful things, and shouldering these amazing challenges. But the truth is often that behind the doors, the women are often exhausted, and they're isolated, and they're overwhelmed. And so anybody, family members, community members, anybody if they could spend time understanding the true nature of caregiving responsibilities, and begin talking about how to better support caregivers. And there's that that's a long and complicated answer in terms of how we better support caregivers, but simply just better understanding what they do is a first step.
Shawna Reibling 31:14
What are your plans going forward in this research area?
Laura MacGregor 31:18
Certainly this research project, I think, created a lot of questions. We need to figure out how, I mentioned that the majority of mothers have healthy boundaries and have a good sense of this interconnection and where their experiences begin and end so that ideally, they're advocating for their child and not bringing their needs into the experience. But there's always going to be parents on either end of the spectrum, who are either disconnected or are over, overly involved. So we need to figure out how to sort out, you know, sort out these questions in terms of figuring out are we working with someone where there are perhaps more complicated issues going on? You know, this research opens up issues like what about primary caregiving dads or men? What about the experiences beyond sort of the Waterloo community? So bringing in cultural communities where there might be different experiences, navigating the healthcare system. What about new Canadians who don't speak English and are struggling to be heard with those challenges, not to mention, sort of this this maternal knowledge? Like what about things that are complicating this relationship even more than it was complicated within my study? I think there's all sorts of research questions that come out of that. What about power and voice and the ethical challenges of someone speaking on behalf of another who cannot speak for themselves? I like to think that as my, sort of my research journey unfolds, I might have the opportunity to ask some of those questions. I do you think that this project brought forth more questions than it did maybe provide answers.
Shawna Reibling 33:07
I didn't want this interview to end without you telling me a little bit more about Matthew as a person and who he was.
Laura MacGregor 33:14
Sure. He was, he was a funny guy. So he passed away when he was 21. But until then, he was an outgoing guy, he was a funny guy. He loved cartoons, he loved bubbles, he loved music, he loved, he loved Disney movies, my goodness, he loved Disney movies. In particular, he had a fondness for Tinkerbell, which is, and it's interesting for a child who didn't have words, he could communicate quite clearly the things he liked and he didn't like. He also really liked the Kitchener Rangers. He was a season ticket holder, and he went to the games and he really enjoyed attending the games. And we're not sure if he actually really understood the game of hockey but the excitement of the game, the noise, the crowd, the laser show at the beginning of the game, these were all these were all things that he loved, he adored. He loved being outside in nature. He loved going for walks. He couldn't tolerate extremes in temperature, but this time of year that we're experiencing right now, so the crisp fall days that are pleasantly cool, but not cold or hot, were his preferred time to be outside and we would take him for walks and he loved to watch the wind sort of blow through the trees. He had a lot of a lot of interest in life that he was able to clearly communicate to us that he enjoyed these activities. And and he was, we think he was, an outgoing, fun loving guy and we're grateful that we were able to spend 21 years with him.
Shawna Reibling 34:45
Thank you for sharing your research and your experiences with me today.
Laura MacGregor 34:48
You are most welcome.
34:50
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Shawna Reibling 34:59
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