Inuit experiences of and expertise on the 21st-century tuberculosis epidemic in Nunavik, Quebec: a qualitative community-based participatory study.

backgroundIn Nunavik, the Inuit lands in Quebec, the incidence of tuberculosis has been rising and is currently 1000 times that seen among non-foreign-born Quebec residents. To inform tuberculosis policies aligned with Inuit self-determination, we sought to explore Nunavimmiut (Inuit of Nunavik) experiences with tuberculosis care.

methodsWe undertook a community-based participatory action research project in an Indigenous research methodology (IRM) framework. From 2022 to 2023, Indigenous researchers (First Nations and Inuit) conducted interviews and focus groups with Nunavimmiut about tuberculosis and health care experiences. We also interviewed health care workers. In our data analyses, we used constructivist grounded theory integrated with IRM to identify constructs. Findings derived from Nunavimmiut-reported perspectives and experiences informed calls for policy and service changes.

resultsWe interviewed 156 Inuit (37% aged ≤ 35 yr, 61% women), in 5 Nunavik communities and in Montréal, and 21 health care workers. Nunavimmiut shared a strong desire to protect individual and community health, which they reported was undermined by under-resourced health services. Contemporary tuberculosis care itself was identified as a source of hardship, with contributing factors including displacement outside of community, isolation, directly observed therapy, fear of coercive measures, and threat of culturally unsafe experiences in health care settings. Information gaps undermined agency and caused heightened anxiety and stigma related to tuberculosis. The rarity of the Inuktitut language in health services contrasted with its predominance in community life. Health care workers echoed these concerns. Recommendations by Nunavimmiut for improving tuberculosis care were grouped into 7 calls to action: increasing Inuit control over services and data; providing person-centred care; increasing local services to minimize displacement; using community-wide screening, adapted locally; training and hiring more Inuit health care workers; reducing stigma; and implementing Inuit-led cultural safety training for health care workers.

interpretationNunavimmiut reported experiencing program-centred tuberculosis care, requiring Inuit to adapt to services that are shaped by resource scarcity. By contrast, Inuit recommended person-centred tuberculosis care that is supportive and responsive to community needs. Changes will necessitate reconciliation- and decolonization-aligned policy changes and increased resources.