The "Understanding from Within" (UFW) project was part of the National Health Population Study of Neurological Conditions (NHPSNC), a 4-year study aimed at better understanding the scope of neurological conditions in Canada, and funded by the Public Health Agency of Canada. The goal of the UFW project was to develop a better understanding of how Aboriginal people conceptualize neurological conditions and the impacts on their families and communities, and the resources and supports needed to provide culturally safe and appropriate care. The research was qualitative and used an Indigenous Research Methodologies (IRM) approach to guide the design, collection of data, and analysis. Two methods were used to collect information: in-depth interviews and research circles (focus groups). A total of 80 people participated in the research, 69 women and 11 men. In-depth interviews were undertaken with key informants (22), with Aboriginal people living with a neurological condition (18), and with Aboriginal people caring for someone with a neurological condition (40). This paper examines the physical, mental, emotional, and spiritual impacts of neurological conditions on Aboriginal people, primarily women. It also examines other themes that emerged from the narratives, including recommendations to healthcare providers and cross-cutting themes that are relevant to culturally safe care and how it relates to neurological conditions.
Recent ethical guidelines developed by the Canadian Institutes of Health Research along with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans stress the importance of Aboriginal community engagement in research. Although these are positive changes meant to ensure respectful and responsive research relationships between communities and researchers, the understanding of 'community' employed by the new guidelines is problematic. In this sense, the guidelines rely on hegemonic understandings of what it is to be an Aboriginal person in Canada, as well as white spatial imaginaries of Aboriginal geographies. In this way, the guidelines codify Aboriginality and its spatiality as that of well-structured, landed, bounded and distinct rural communities. However, the contemporary Métis communities with whom the authors have worked rarely fit into hegemonic imaginaries of Aboriginality and its geographies in Canada. Rather, Métis communities are often institutionally weak, geographically dispersed and sociologically complex. Thus, we argue that the guidelines instantiate a territorialisation of society and space that risks re-marginalising Métis communities.
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