Researcher Profile: Winter 2019
Turning the lens toward: Dr. Sandra Juutilainen, PhD, Post-Doctoral Fellow and Dr. Melanie Jeffrey, PhD, Post-Doctoral Fellow
“Traumatic spinal cord injury and Indigenous persons: a mixed-method pilot study to determine characteristics of a meaningful database in Ontario” (Principal investigator: Dr. Suzanne Stewart, PhD, C.Pysch., Waakinabesse-Bryce Institute for Indigenous Health at the Dalla Lana School of Health, University of Toronto)
The data available to help researchers and healthcare providers understand and address the unique needs of the province’s Indigenous peoples is the focus of a post-doctoral study. The Ontario Neurotrauma Foundation and partner Rick Hansen Institute are supporting the post-doctoral fellows working on the project, Drs. Sandra Juutilainen and Melanie Jeffery.
Currently, there is a limited amount of information available, making it difficult to address the healthcare and rehabilitation requirements for often rural and remote Indigenous people living with SCI. The study has three main objectives:
- To understand the current landscape of traumatic spinal cord injury (TSCI) among First Nations populations in Ontario with regards to their health care experiences, services and supports via stakeholder interviews.
- Qualitative data will determine direction for quantitative analyses of existing data sets.
- To identify aspect of a cohesive and meaningful database for First Nations persons living with TSCI and their caregivers in Ontario.
A conversation with Drs. Sandra Juutilainen and Melanie Jeffery
What drew you to this post-doctoral research project given that neither of you have a research or clinical background specifically related to spinal cord injury?
We both were completing our previous post-doctoral projects and this one appealed to both of us although we didn’t know each other before starting this project. The subject was interesting to us, each for different reasons but we were both intrigued by the joint funding partners, ONF and RHI.
Sandra, whose family background is Oneida of the Thames and Finnish, brings qualitative skills to the project. She has abackground in Indigenous research, ethics and knows the importance of consultation and inclusion of indigenous people in research. Sandra also lives with epilepsy and this has informed her work and study in the neuroscience area.
Melanie brings a neuroscience and data analytics background to the project.She has taught indigenous studies for 12 years with a focus on systemic racism in healthcare, making this study a good fit with her academic emphasis. She also understands the critical importance of having indigenous voices at the table as co-creators.
Could you provide an explanation of the research including your process and anticipated outcomes?
We’re trying to identify and start to build the model for a meaningful and cohesive database. Where to start is part of the question since we know there is significant under- and inaccurate reporting on spinal cord injury in relation to Ontario’s indigenous population.
We are currently in the final stages of the ethics approval processbut have been able to meet with key informants in Toronto including Principal Investigator Suzanne Stewart, two elders, representatives of several University of Toronto hospitals involved in the care of those living with SCI.
Melanie will study the current codes in various databases to attempt to find “holes” that are specifically related to the realities of First Nations, there is currently little data to support the care requirements and needs for those living with SCI. In other words, what is absent from the way in which data is collected that excludes or does not take into account Indigenous ways of thinking and being. Sandra will lead the work to completequalitative interviews with individuals living with SCI, caregivers, health service providers, etc. in rural and remote areas.
We believe that when all of this is combined it will provide a base of knowledge that does not now exist.
How might the work you are doing affect change and address these and other issues unique to Ontario’s Indigenous peoples?
We think this study is just a start. It’s focused on Indigenous people in Ontario but this really is a national issue. The findings should help other provinces more quickly identify data gaps and then develop the best ways to address and close those gaps in care for people living with SCI.
We also think questions will arise such as:
- Are hospitals addressing issues of culturally appropriate care in terms of Indigenous peoples?
- Is there a link between traumatic brain injury in Indigenous populations and the level of care they are receiving?
Rural and remote communities generally are not the focus for this kind of study so we hope our results will increase understanding of the different needs of Indigenous communities when it comes to care for those living with chronic health conditions that require long-term rehabilitation and supports.