Walking the Tuberculosis Journey: Aboriginal Lived Experience shaping TB care in Northern Australia
- 1Menzies School of Health Research: Charles Darwin University
Abstract
IntroductionTuberculosis (TB) care is typically organised around biomedical and public health priorities, including diagnosis, infection control, treatment adherence, and prevention of transmission. Although qualitative research has described the burden of TB, lived experience is often treated as descriptive rather than as knowledge that can inform care. We examined how Aboriginal people in remote northern Australia experienced TB, and what these experiences reveal about how TB care can be strengthened in practice.
MethodsWe conducted an inductive qualitative study involving in-depth interviews with Aboriginal people with lived experience of TB. Interviews were supported by Aboriginal community health workers. Data were analysed using reflexive thematic analysis, with Aboriginal contributors involved in interpretive workshops to refine themes and guide culturally safe representation.
ResultsTwenty-one Aboriginal people contributed across 13 interviews. Three interrelated themes described the TB journey. Illness often challenged dominant biomedical expectations: symptoms were commonly normalised, which fear, ambivalence, and endurance were shaped by experiences of compromised health and cumulative loss. Distance from family, community, and Country was experienced as both protection and sacrifice; separation was endured to protect others but carried substantial costs, particularly when its purpose and duration were unclear. Recovery involved rebuilding strength, connection, and identity. Clear explanation, continuity, and opportunities for choice supported engagement in care, while survivors and community health workers provided important sources of trust, support, and shared responsibility.
ConclusionLived experience is practice-relevant knowledge for TB programmes. Care should minimise avoidable harms of separation, support continuity and choice, and recognise survivors, Aboriginal health workers, and communities as partners in the design and delivery of care.
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BibTeX
@misc{smith2026walking,
title = {{Walking the Tuberculosis Journey: Aboriginal Lived Experience shaping TB care in Northern Australia}},
author = {E. L. Smith and C. Lowbridge and J. Bonney and N. Joshua and W. Martin and A. Martin and R. Brian and S. Roberts and C. Gunabarra and J. Darwin and V. Bokmakarray and K. Rostron-Smith and P. Gibson and J. Gatti and T. Nguyen and V. Krause and E. Stephenson and J. Davies and L. McCarthy and A. Ralph and S. Bernays},
howpublished = {medRxiv},
year = {2026},
month = oct,
doi = {10.64898/2026.10.08.26365024},
url = {https://www.medrxiv.org/content/10.64898/2026.10.08.26365024v1},
note = {CC BY},
}
RIS
TY - UNPB
TI - Walking the Tuberculosis Journey: Aboriginal Lived Experience shaping TB care in Northern Australia
AU - E. L. Smith
AU - C. Lowbridge
AU - J. Bonney
AU - N. Joshua
AU - W. Martin
AU - A. Martin
AU - R. Brian
AU - S. Roberts
AU - C. Gunabarra
AU - J. Darwin
AU - V. Bokmakarray
AU - K. Rostron-Smith
AU - P. Gibson
AU - J. Gatti
AU - T. Nguyen
AU - V. Krause
AU - E. Stephenson
AU - J. Davies
AU - L. McCarthy
AU - A. Ralph
AU - S. Bernays
PY - 2026
DA - 2026/10/08
PB - medRxiv
DO - 10.64898/2026.10.08.26365024
UR - https://www.medrxiv.org/content/10.64898/2026.10.08.26365024v1
AB - IntroductionTuberculosis (TB) care is typically organised around biomedical and public health priorities, including diagnosis, infection control, treatment adherence, and prevention of transmission. Although qualitative research has described the burden of TB, lived experience is often treated as descriptive rather than as knowledge that can inform care. We examined how Aboriginal people in remote northern Australia experienced TB, and what these experiences reveal about how TB care can be strengthened in practice. MethodsWe conducted an inductive qualitative study involving in-depth interviews with Aboriginal people with lived experience of TB. Interviews were supported by Aboriginal community health workers. Data were analysed using reflexive thematic analysis, with Aboriginal contributors involved in interpretive workshops to refine themes and guide culturally safe representation. ResultsTwenty-one Aboriginal people contributed across 13 interviews. Three interrelated themes described the TB journey. Illness often challenged dominant biomedical expectations: symptoms were commonly normalised, which fear, ambivalence, and endurance were shaped by experiences of compromised health and cumulative loss. Distance from family, community, and Country was experienced as both protection and sacrifice; separation was endured to protect others but carried substantial costs, particularly when its purpose and duration were unclear. Recovery involved rebuilding strength, connection, and identity. Clear explanation, continuity, and opportunities for choice supported engagement in care, while survivors and community health workers provided important sources of trust, support, and shared responsibility. ConclusionLived experience is practice-relevant knowledge for TB programmes. Care should minimise avoidable harms of separation, support continuity and choice, and recognise survivors, Aboriginal health workers, and communities as partners in the design and delivery of care.
ER -