“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 focus of this study is to help researchers and healthcare providers understand and address the unique needs of First Nations personal living with TSCI in Ontario. Currently, there is a limited amount of information available, making it difficult to address the healthcare and rehabilitation requirements for First Nations persons living with SCI in urban, rural and remote settings. 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 aspects of a cohesive and meaningful database for First Nations persons living with TSCI and their caregivers in Ontario.
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.
A conversation with Drs. Sandra Juutilainen and Melanie Jeffrey
What drew you to this research project given that neither of you have a research or clinical background specifically related to spinal cord injury?
We appreciate that funding partners, including the Rick Hansen Institute and the Ontario Neurotrauma Foundation and the government of Ontario are responding to Truth and Reconciliation Commission’s Calls to Action. The subject was interesting to us as Indigenous health researchers, each for different reasons.
Sandra is a member of Oneida of the Thames and also of Finnish/Canadian. She brings qualitative skills to the project. She has a background in Indigenous research, ethics and centres the importance of consultation and inclusion of Indigenous people in research. Sandra’s background and experience working with Indigenous communities has informed her work in the area of Indigenous health and wellbeing.
Melanie is a settler with British roots. She 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, ethics of Indigenous research, and Indigenous science courses. She also understands the critical importance of having Indigenous voices at the table as co-creators. Melanie also lives with epilepsy; this has informed her work and study in neuroscience.
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 database that is meaningful and cohesive to First Nations living with TSCI. To begin to shape the study design, we met with Dr. Suzanne Stewart, Director of the Waakebiness-Bryce Institute for Indigenous Health, the principle investigator on this project; she has considerable expertise in Indigenous health research. We also met with an Elder and a Traditional Knowledge Keeper at the Waakebiness-Bryce Institute for Indigenous Health. These are important steps to ensure ethical research relationships and cultural safety.
We have developed a web of relationships with key informants, initially identified by the Rick Hansen Institute and the Ontario Neurotrauma Foundation. These key informants have expertise in spinal cord injury health care and rehabilitation at the University of Toronto’s University Hospital Network.
Melanie will study various databases to compare and contrast First nations’ and non-First Nations’ experiences of TSCI. Sandra will lead the work to complete qualitative interviews with individuals living with SCI, caregivers, health service providers in urban, rural and remote areas. Melanie will then use these qualitative findings to guide further quantitative research. Given the limitations of existing healthcare data, we believe that when all of this is completed it will provide a base of knowledge that currently does not exist.
How might the work you are doing affect change and address these and other issues unique to First Nations in Ontario?
This strengths-based pilot study will focus on First Nations experiences and resiliencies while living with TSCI throughout the continuum of care. This will include identifying barriers and facilitators to physical, mental, emotional and spiritual health.
Many Indigenous persons in Canada, including First Nations, live in urban settings, as well as rural and remote communities. By examining all three areas in Northern Ontario, far from spinal care centres of excellence, our results may increase understanding of the different needs of urban, rural and remote communities for those living with TSCI that require long-term rehabilitation and supports.
We believe the results of the study may have broad implications for the development of more inclusive databases across Canada, with potential to improve service delivery for both Indigenous and non-Indigenous persons.