Navigating long COVID: integrated self-management, structural barriers, and patient-identified recommendations among marginalized populations and individuals with preexisting mental health conditions.

PURPOSE: This qualitative study explored how adults living with long COVID, including persons from marginalized and visible minority groups, or individuals with preexisting mental health conditions, manage symptoms, navigate healthcare systems, and identify priorities for improving long COVID care and support.

METHODS

We conducted semi-structured virtual interviews with 34 adults living in Canada with long COVID, drawn from marginalized/visible minority groups or with preexisting mental health conditions. Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis. The results were reported per the COnsolidated criteria for REporting Qualitative research (COREQ) checklist.

RESULTS

Four overarching themes were identified. (1) Personal Strategies for Well-Being and Daily Living (coordinated self-management, pacing, adapted routines); (2) Advocacy and Access Barriers (fragmented services, delayed care, persistent self-advocacy); (3) Clinical Awareness and Information Sharing (diagnostic uncertainty, symptom-based diagnosis, centralized information); (4) Social Support and Equitable Care Experiences (identity-based bias, reliance on social networks).

CONCLUSION

Participants managed integrated self-management systems while navigating structural gaps, credibility challenges, and inequities in care. Recommendations emphasized symptom-based diagnosis, coordinated pathways, pacing-centred rehabilitation, navigation support, and culturally informed services.