(BA Honours cum laude Sociology, 2019 )
My experience as a researcher began in 2013 when my son was born with various complex needs, and I began the often-frustrating trajectory parents of a child with complex disabilities unfortunate experience. I encountered the conventional and ongoing barriers contextualizing the service provider's role as the expert, which silences the voice of the family. As my family struggled to fit within the dismissive and limiting box conceptualized for families, the lack of partnerships emphasized by the continuous struggle for hierarchical power often left our family without appropriate support services. My attempt to engage in my son's healthcare was often met with resistance.
My dedication as an advocate led me to return to school as a mature student to aid in the construction of problem-solving solutions necessary within children's healthcare. At Algoma University I completed my BA in sociology, with a minor in human development, honors cum laude. My independent qualitative thesis focused on community-engaged research by exploring a family-centred model of care through the lens of the often-overlooked Northern Ontario families.
In conjunction with the data I collected, my lived experience has contributed to my current master’s thesis work, titled Expected to care: Supporting sibling carers. Research conclusively illustrates that constructing a plan for the transition of the carer role results in fewer family crises. Due to the subject sensitivity and the common misconception that families assume that siblings will organically transition into the role of carer, the result is a lack of future planning. The consequence is siblings feeling excluded and unsupported during a transition that often occurs often at a time of crisis. I want to understand how we can change families expectations of the planning process and support these necessary yet difficult conversations.
Using a mixed methodology, I curated a questionnaire to understand the lived experiences through the lens of the sibling who has already transitioned to primary caregiver. Siblings expressed feeling excluded from the limited family discussions and were left unprepared and unsupported when the transition eventually happened. Next, in an inclusive and safe space, I reinforced sibling empowerment by interviewing sibling participants to explore and expand on the issues raised in the questionnaire. My research shows that siblings struggle to understand their role in relation to their sibling, that families assume siblings will become caregivers, and that some parents assume that they will outlive their child with a disability often leading to the false assumption that planning was not necessary.
What has been very unique in my work is the added role of the pandemic. Families have been forced to unexpectedly transition due to COVID restrictions and/or related illness, leaving families experiencing critical mental health complications. I also have a passion for knowledge translation. Although research is essential, the information we gather as researchers must be easily accessible outside of academia. In 2020 I graduated from CanChild, McMaster University, with a Family Engagement in Research certificate, during which I co-authored a knowledge translation initiative that is available on the CanChild website. It provides both families and service providers with a supportive checklist to ensure families feel empowered and understood in the decision-making process for their child. Additionally, I work in the field of the history of disability at the Northern Ontario School of Medicine. I work with primary and secondary material for use in research papers and an upcoming book.
I also strongly believe in supporting families' empowerment in the process of patient engagement, and I enjoy working as a consultant in our community for families, service providers, and patient partners. I have had the opportunity to join various research projects over the last two years with CanChild, Kids Brain Health Network, the federal government of Canada, and McGill University. Currently I am working on two teams reconstructing existing policy. The first looks at the mental health of families and their experiences receiving assistance for their child with additional needs during COVID. The second is exploring an existing tool used by service providers to better reflect the needs of families.
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