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Views (N=15) Were Conducted in A University of Alberta A First Nation Community’s Perspectives of Tuberculosis by Jessica Moffatt A thesis submitted to the Faculty of Graduate Studies and Research in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Experimental Medicine Department of Medicine Community Based Research ©Jessica Moffatt Spring 2013 Edmonton, Alberta Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission. “If we are together nothing is impossible. If we are divided all will fail.” -Winston Churchill Abstract Aims: This study aims to 1) provide a platform to discuss and document one First Nations community’s experiences and impacts of tuberculosis (TB); and 2) to understand the social context occurring within the community which may promote continual disease transmission. Methods: This Community-Based Participatory Research study was guided by postcolonial theory. Semi-structured interviews (n=15) were conducted in a northern Alberta First Nations reserve community with a high incidence of tuberculosis. Purposive and snowball sampling was used to obtain our sample. Study inclusion was open to any community member over 14 years of age, who had personally or through an immediate family member, experienced the effects of the disease. Data collection and analysis was iterative, using qualitative content analysis. A Community Advisory Board, which was comprised of community members, Elders, and two community co-investigators, guided the project. Findings: Participants describe the exclusion resulting within, and because of sanitoriums. Exclusion was categorized into 1) the racial segregation of Canadian sanitoriums, where Aboriginal TB patients were excluded from mainstream institutions; 2) the exclusion of Aboriginal culture and practices of healing within the treatment of TB; and 3) the exclusion internal to community members, where members of the community internally labeled the healed individual post- sanitorium as an ‘other’. Participants describe the effect of inadequate housing and overcrowding on the high incidence rates noted in their community. Reasons for inadequate housing are defined broadly to include the impact of cultural norms, endemic crowding, addictive behaviors, and the effects of transitioning to the city. Dissemination: The findings of this study were used to create a community- owned educational video. This video documents 1) the personal and unique stories of community members dealing with TB, and 2) the educational/biomedical aspects of TB. Conclusion: By asking to hear participant’s experiences and understanding about TB, this study sheds light on the conditions (both historical and current) which influence TB transmission today. The findings of this study demonstrate the complexity of health on-reserve, as well as the many ways colonial experiences influence disease progression today. Acknowledgement Over the course of my PhD I have had the privilege to work with many inspirational and wise people. It is a great pleasure to acknowledge those who have supported and guided me through my time working on this dissertation. Foremost, I would like to thank my two supervisors, Dr. Richard Long and Dr. Maria Mayan. Without your dedication and on-going support I would not have survived the PhD process. Thank you for continuously pushing me to be a better student, for motivating me, for being my champion, and for inspiring me to be the best I can be. I would also like to thank the participating community and the two co- investigators. Without your partnership this project would not have been possible. The insight and inspiration I gained through my time in the community will stay with me, professionally and personally, as I move throughout life. I would also like to thank my thesis committee, Dr. Lola Baydala and Dr. Malcolm King, for their support throughout the project. Thank you for the many times you met with me informally and formally, and for all the feedback you have provided. Through these encounters I gained invaluable understanding that allowed me to comprehend the project on a much deeper level. Lastly, I would like to thank my friends and family for your immense support throughout this process. Thank you to my Mom and Sister for believing in me when I didn’t necessarily believe in myself, and for providing me with the fire to keep going forward. Thank you to my Grandpa for giving me the confidence to know I can achieve anything I set my mind to. And lastly, thank you to my Nanny for always being in my corner and cheering me on. Thinking of you has given me the strength to push through difficult times. Table of Contents Chapter 1: Project Overview ...................................................................................................................................... 0 Ethics ....................................................................................................................................................................... 3 Overview of Those Involved in the Project ............................................................................................................. 5 Methods ................................................................................................................................................................. 11 Trustworthiness ..................................................................................................................................................... 14 Structure of the Dissertation .................................................................................................................................. 15 References ............................................................................................................................................................. 19 Chapter 2: Literature Review ............................................................................................................................... 20 Overview of Community-Based Participatory Research .................................................................................. 21 Overview of Aboriginal Health Research ........................................................................................................... 26 History of TB within Canadian Aboriginal Populations .................................................................................... 27 Overview of First Nations TB & Housing ........................................................................................................... 35 Conclusion ............................................................................................................................................................ 40 References ............................................................................................................................................................ 41 Chapter 3: Sanitoriums and the Canadian colonial legacy.................................................................................... 51 Aims ...................................................................................................................................................................... 55 Methods ................................................................................................................................................................. 55 Findings ................................................................................................................................................................. 60 Discussion ............................................................................................................................................................. 69 Conclusion ............................................................................................................................................................. 74 References ............................................................................................................................................................. 75 Chapter 4: The multifaceted relationship between on-reserve housing and tuberculosis. ................................. 78 Tuberculosis and Housing ..................................................................................................................................... 79 Methods ................................................................................................................................................................. 81 Results ................................................................................................................................................................... 84 Conclusion ............................................................................................................................................................ 96 References ............................................................................................................................................................
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