“Finally when I started falling down”: Indigenous tuberculosis patient experiences of health and illness on the Canadian prairies

Abstract

This paper adds evidence to a growing body of literature seeking to understand the disproportionate occurrence of tuberculosis (TB) in Indigenous populations of Canada and reveals insights that may inform effective interventions. As a disease, TB is recognized as a disorder of the body, for which there are successful treatments. Its persistence in some populations, however, requires an understanding of TB as an illness, whereby disease is shaped into behaviours and experiences. Fifty-five self-identified Indigenous participants with infectious pulmonary TB completed a questionnaire and an interview as part of the Determinants of Tuberculosis Transmission (DTT) project. Questionnaire data report on sociodemographic information and exposure to TB risk factors, while interview data describe participants’ experiences of TB within the context of their personal histories and everyday lives. Analysis showed that TB symptoms did not stand out as unusual in the everyday life and health experiences of participants. State of health and decisions about accessing healthcare were associated with socioeconomic deprivation, as well as negative experiences connected with historical and contemporary impacts of colonization. The “tipping point” concept effectively captures the shift in health that pushes participants to seek healthcare. Family, friends, and other caregivers are important influences and need to be part of the effort to avoid advanced TB illness and stop the cycle of transmission. More significantly, there is a need to address the structures and systems that produce and perpetuate life conditions that result in a usual state of compromised health.