Inuit Experiences of and Expertise on the 21st-Century Tuberculosis Epidemic in Nunavik, Quebec

06 Apr 20264 min read0 viewsJournal Feed

GIST

In Nunavik, the Inuit lands of Quebec, tuberculosis incidence remains markedly higher than among non-foreign-born Quebec residents. This qualitative study used community-based participatory action research within an Indigenous research methodology framework to explore Nunavimmiut experiences with tuberculosis care from 2022–2023.

Indigenous researchers conducted interviews and focus groups with Nunavimmiut and health care workers to identify themes about care delivery and system factors. Key findings indicate a strong desire to protect community health, tempered by under-resourced health services and program-centered tuberculosis care.

Reported hardships included displaced care outside the community, patient isolation, the burden of directly observed therapy, fear of coercive measures, and experiences of culturally unsafe health care. Information gaps amplified anxiety and stigma, while Inuktitut language prominence in community life contrasted with its limited presence in health services.

Health workers corroborated these concerns. Seven recommended actions emerged, focusing on increasing Inuit control over services and data; delivering person-centered, locally available care; expanding local services to reduce displacement; conducting community-wide, locally adapted screening; hiring and training more Inuit health workers; reducing stigma; and implementing Inuit-led cultural safety training for staff.

Clinical Editorial

Indigenous research approach and study design

This qualitative study employs a community-based participatory action research framework within an Indigenous research methodology approach to explore Nunavimmiut experiences with tuberculosis care.
Data were gathered from 2022 to 2023 through interviews and focus groups conducted by Indigenous researchers with Nunavimmiut, along with interviews of health care workers.
The analytic approach combined constructivist grounded theory with IRM to identify thematic constructs grounded in Nunavimmiut perspectives.
The study collated perspectives from 156 Inuit participants across five Nunavik communities and Montréal, plus 21 health care workers, to derive policy-relevant insights.

Population and setting

Participants included Nunavimmiut (Inuit of Nunavik), with 37% aged 35 years or younger and 61% identifying as female.
The setting spans multiple communities in Nunavik and extends to Montréal, reflecting pathways of care that involve displacement for treatment and access to services outside the community.

Experiences and key themes in tuberculosis care

A central finding is a strong desire among Nunavimmiut to safeguard individual and community health, which they feel is hindered by under-resourced health services.
Contemporary tuberculosis care was described as a source of hardship, linked to service-disruptive factors such as patient displacement outside the community, isolation, adherence monitoring via directly observed therapy, fear of coercive measures, and experiences of potential cultural insensitivity within health care settings.
Information gaps were identified as undermining patient agency, contributing to elevated anxiety and stigma surrounding tuberculosis.
There was a notable contrast between the predominance of Inuktitut in community life and its rarity within health services, suggesting linguistic barriers within clinical encounters.

Health care workforce perspectives

Health care workers acknowledged the concerns raised by Nunavimmiut, corroborating perceived program-centric aspects of tuberculosis care and highlighting resource-related constraints.

Policy and practice implications

Nunavimmiut recommendations cluster into seven action areas: (1) enhancing Inuit control over health services and data, (2) advancing person-centred care, (3) expanding local services to reduce displacement, (4) implementing locally adapted community-wide screening, (5) increasing training and recruitment of Inuit health workers, (6) reducing stigma, and (7) instituting Inuit-led cultural safety training for health care workers.
The authors frame changes as requiring reconciliation- and decolonization-aligned policy reforms and augmented resource allocations to realize community-driven tuberculosis care.

Context and limitations

The report emphasizes lived experience and community-owned insights into tuberculosis care, highlighting a tension between program-centric service delivery and desired person-centred care.