Tell us a little bit about yourself
I was most recently a postdoctoral fellow in the School of Physical and Occupational Therapy at McGill University. Before that, I completed my Bachelors in the Honours Health Sciences Program and Child Health Specialization, my Master of Rehabilitation Science, and my PhD in Rehabilitation Science at McMaster University.
What are your current research interests?
My current research has evolved from my graduate studies at McMaster University. My PhD studies were focused on understanding the experiences of siblings – youth and young adults – who have a sibling with a disability. The important thing I learned early in my doctoral studies was to engage with siblings with lived experience of having a sibling with a disability.
I don't have the lived experience of having a sibling with a disability, but I do have an older sister who is 18 years older than me, and she had really important roles in my life. She was like a second mom to me. She really took care of me growing up, and she inspires and motivates me all the time in my work.
That was how I pursued the topic of understanding sibling relationships and having a disability on top of that – and to think about the challenges and the supports that siblings need when they move through adolescence and the young adulthood stages. So, my doctoral studies were focused on understanding the experiences of siblings and identifying supports they need from them.
And as I move forward in my work, it’s that engagement piece, which is so important – how to engage with siblings, because they want to be really engaged in the research that we do. They want to identify the topics of research. Besides this focus of how to engage with siblings and youth, I’m also expanding to also focus on how to engage with communities and organizations, so we can move the research into the community, into practice and into policies.
How do you feel about joining the Faculty of Social Work as the Azrieli Accelerator Assistant Professor in Youth, Sibling, and Community Engaged Research?
I am so grateful for this position. I'm also coming in as someone who is currently holding a CIHR Canadian Institutes of Health Research, Patient Oriented Research Award – Transition to Leadership Stream, that provides funding for supports and conducting the research. With my position, there's also funding support including the Alberta Children's Hospital Research Institute, the O'Brien Institute for Public Health, Office of the Vice-President (Research), and the Azrieli Accelerator.
How do you see your role in this new professorship?
I see my role as bringing together partnerships. I'm bringing together partners from Ontario, from Quebec, and now Alberta. Besides engaging with siblings, youth, families, and parents, and the community, I’ll be focused on how to conduct research to support families of children who have a neurodevelopmental disability, so that services and supports can be improved. I’ll be working on how to co-create the supports and resources – for and with the (research) partners – and then be able to share these resources across Canada. In the end, I hope to share this knowledge both nationally and internationally.
So, my work is really focused on that engagement - on bringing together these partnerships, resources and supports and bringing that knowledge directly to the communities, identifying the needs of the communities, as well as how to make changes in policies.
How will you move your research forward in the Faculty of Social Work?
I see my program of research bringing together all the experiences I've had to date - which I see as my three research pillars.
My first research pillar is looking at how to support siblings – youth and young adults who have a sibling who is neurodiverse. And looking at how to support siblings and the sibling relationship. What are the resources that they need to prepare for their future roles? For example, some siblings - and some of these are really young, as young as 12 or 14 – saying they want to be a future caregiver to their neurodiverse sibling. But how do they find the supports for that? Or how do they navigate that with developing their own identity?
My second pillar of research is looking at how to train neurodiverse youth who want to become engaged in research. There are already existing training programs such as the Family Engagement Research Training Program, but how do we adapt different resources to train youth who are neurodiverse, who want to engage in research?
And my third pillar of research, which is so important, is knowledge mobilization. How to mobilize knowledge – to take the knowledge that we have generated through research to bring that to the people who need to use that knowledge? Whether that's policymakers, community organizations, as well as the youth, the siblings and the families.
I'm so excited about the Azrieli Accelerator Assistant Professorship position because for me, it's not just thinking about "neurodiverse individuals". It's thinking, what does that entail? What are the intersecting identities and intersectionalities?
They may have a neurodevelopmental disability, for example, but they also have other identities - having a mental health condition, their race, their gender, their lived experience, some of them are also from Indigenous communities, some are first- or second-generation immigrant youth. What does that look like with their family supports and systems that they're able to access? And even questions about who is a part of the family and their support system? So that's why I focus on understanding that sibling relationship, that parent relationship, and the supports they have in the community.
I want to better understand those intersectional identities to support youth so that they can also become advocates and champions and whether it's for their own healthcare or for them to move ahead in their careers, employment, and to participate and be a part of the community.
Can you explain the transdisciplinary nature of your work?
Working with a transdisciplinary or multidisciplinary lens means even though I’m in social work, I come from a rehabilitation science background, where I’ve worked with occupational therapists, physiotherapists, physicians, researchers and policymakers. These connections can be leveraged to create meaningful and impactful programs and pathways to services.
That's what makes me so excited with this Azrieli Accelerator Assistant Professorship. To work not only within the Faculty of Social Work, but also across different faculties and collaborating with other researchers, institutes, groups and partners. For example, the Alberta Children's Hospital Research Institute and the O'Brien Institute for Public Health, connecting with these partners, and advancing UCalgary’s transdisciplinary strategy.
I'm also bring my connections with many other institutions. I did my graduate studies at McMaster and with the CanChild Centre for Childhood Disability Research. I continue to carry that forward in partnership. I'm also seeking partnerships from the Centre for Addiction and Mental Health (CAMH), I was with McGill University (as a previous postdoctoral fellow), so I’m looking at how I can bring in that partnership. I did an internship in the Netherlands for two and a half months and formed partnerships there with different sibling groups and researchers.
Moving forward, my vision is to create a network where we can all leverage our strengths, existing resources, skill sets and experiences to create programs that are available provincially, nationally and internationally, so that we can really break down the silos to provide families, and children and youth who are neurodiverse with access to the services they require.
How do you think your transdisciplinary work will fit within the Faculty of Social Work?
I think this position is an ideal fit, related to what I just mentioned about the collaborations and partnerships I’m focused on. I look at the values of social work – about valuing human relationships and upholding social justice and ensuring equity to services.
And even though I just started in the faculty, I'm already hearing about the students and the faculty members who want to create systems change. And that's exactly what I want to do in my partnership and work with communities, individuals and families. I want to start having conversations and dialogues about how to move our research forward to create that systemic change. So, I think this faculty and position is the ideal fit with the work I'm already doing – work that is already aligned so well with social work, practice.
A lot of my previous work has also focused on the individual and family level. I'm moving now to also focus on the macro, policy level. So, I'm so excited to move forward with in this position to bring all these pieces together.
I can already see the synergies within the Faculty of Social Work and with the broader University of Calgary community. The Faculty of Social Work’s annual research symposium really opened my eyes, because I can see how the faculty is translating its strategic focus on upholding the principles of social justice. Asking, how do we make changes across systems? How do we do this together with a transdisciplinary approach?
I'm excited to see where things are going, not only with working with UCalgary researchers, but also in working and collaborating with communities across Alberta, which is so important. I'm really looking forward to working together with everyone.
These are big problems we’re addressing in supporting neurodiverse families. And I'm thinking, ‘How can we do this together – provincially, nationally and internationally in the future?’
Why are sibling relationships so central role to your research?
It’s important because I begin with thinking about who is included when we talk about the family unit? Often the research I see in childhood disability research has focused on children and parents. This is partly because physicians and healthcare professionals often refer mostly to parents and children – even when siblings are present during appointments.
I’ve heard from siblings with lived experiences, that they feel ignored, and in the background, they don't even get acknowledged by the healthcare professional.
But what I've heard the siblings say, is that they're there for a reason. They have other things to do in their lives. They don't have to be at the health care appointments, but they want to be there.
I've heard from parents who say they don't want to burden the siblings. But it's not something that they can hide. Everyone knows that the family needs the support. So, siblings will say that they want to have a more active role, that they want to be there to support their siblings.
Some needed conversations aren’t happening. Conversations within families are not happening, conversations in the healthcare field are also not happening, and conversations in the education space aren’t happening.
Siblings, especially when they're in the youth and young adulthood stage, are going through their own identity development and transitioning to adulthood. They’re graduating from high school, finding their first job, even deciding if they want to move away from home, which is also a struggle because they know that if they move away and then come back, their roles will change over time.
Siblings also need their own mental health supports. Many of the siblings I work and partner with say they needed to seek mental health support on their own, because they often feel their own experiences growing up were ignored.
I want to be able to support the whole family. In the healthcare space we think of family-centred care. But family-centred care means supporting the whole family and siblings are a part of the family. They also need support. When they feel better supported. It impacts the health outcomes of everyone involved in the family, the youth, the parents and the siblings.
So, my work is focused on how to support siblings and how to start initiating those conversations to make the roles and responsibilities more explicit, instead of these implicit expectations.
So, in supporting siblings and families, your research is ultimately focused on better outcomes everyone in the families of neurodiverse individuals?
Yes, and I really reflect on what better outcomes really means. As I mentioned, one of the strengths that I bring to this position are the partnerships I’ve developed.
Partnerships refers not only to researchers, but also to working directly with communities, and individuals who have lived and living experiences.
Working with the neurodiverse youth, their siblings and parents to identify their needs. What are the issues that they're facing? How can I, as a researcher, come in, and support them and work together to find solutions? And to do that work provincially, nationally and internationally?
And it’s more than just identifying and working to address the needs they’ve identified. I’m also focused on their perspectives on the impacts they can also have in making change. On supporting them so they’re empowered to make that change.
Part of my research is focused on mobilizing this co-created knowledge into practice and to evaluate how effectively we’re sharing that knowledge. Also, to identify where this knowledge is being generated. There's so much knowledge out there, so how do we synthesize that knowledge and work together to create an impact.
Tell us about your personal journey to become an Azrieli Accelerator Assistant Professor in Youth, Sibling, and Community Engaged Research
It's been quite a long journey to get here, and I actually never thought I would go on this journey.
My family was originally from Vietnam, there is quite an age gap between my sister and I, we are 18 years apart. It’s just my sister and I. And my niece who is seven and a half years younger than me. So, there are big differences across generations, we're in a multi-generational household. And so, that's the lens of being a first-generation student navigating and learning about research. When I started, I had no experience with research, and I really am so grateful for the mentorship team that I have with me who were able to support me along the way.
I did my undergraduate studies in Honours Health Sciences Program, and I was part of the first cohort of Child Health Specialization. And that really kick-started my interest and understanding about the development of children.
I was motivated to continue in research on childhood disability because I recognized that the research impacts not only the child with the disability, or neurodiverse children, but also the whole family – the family as a unit and the services and systems that they need.
I think of my own family that is multi-generational, and how my family has been so supportive with me, but also, I'm a first-generation student. As I mentioned, my parents are immigrants and I recognize the challenges and the different roles I had, such as being a translator for my parents, and making sure my family could access the services they required. So that also informs how I work with families.
I then pursued my Masters in Rehabilitation Science because I was interested in research, and I had all these questions – and you can't do all that research in a Masters program. I started to ask myself more questions. I was so motivated with research, that I continued on with a PhD.
I stayed at McMaster, but I knew I needed to go out and see the world. So, I travelled to the Netherlands, I lived there for two and a half months (for an internship). I loved it, and it opened my eyes to see the issues that they are facing and the research that they're doing. What was eye opening was that I could share learnings from my graduate studies to inform the work that they were doing. They could see what Canada is doing, and I got to see what the Netherlands are doing. This past spring, I co-presented an instructional course at the European Academy of Childhood-onset Disability Conference in Belgium with a team from the Netherlands, and it has been amazing to continue with that partnership.
After coming back from the Netherlands, I moved to Montreal, to do a postdoctoral fellowship at McGill University. And part of that reason for that was that I intentionally wanted to learn more about mobilizing knowledge. I knew at the end of my PhD, that there's always research, but where does our research go? I don't want it to just stay in the traditional academic space. Not everyone has access to that. And I had the questions about how do we really make changes in policy and systems? And my postdoctoral fellowship focuses on that, bringing in my expertise of community partnerships.
One of my projects now is looking at social networks – what are our social networks? How are people connected with each other? Another of our projects is focused on how well Canada is doing with implementing human disability policies, such as the United Nations Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities. I want to see how organizations are connected with each other to implement these rights and to monitor human disability rights policies.
I want to create a space that's inclusive, where individuals and youth can feel that they belong in this space. And so, my work will have that goal, to go out and visit the community, to visit where people are at, instead of them coming to me. I want to go out and meet them in that place, and when we create programs, to work together with them so that the programs are inclusive, while being open to feedback so we continue to evolve the programs.
Of course, you’ll also be teaching the next generation of researchers and social workers. How will you approach that?
So, the lens I bring in is that of a first-generation student, and that also really motivates me, because I also want to support the next generation of students. Whenever I work with students, I really bring that individualized approach. I want to understand their goals. I've had mentors support me and my goals throughout my journey, and I want to support my students in the same way.
