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

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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. 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. 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). 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. Rehabilitation services for people living with long COVID should be designed around pacing-centred and energy-management approaches that reflect fluctuating functional and cognitive capacity.Symptom-based assessment and documentation practices are needed across rehabilitation and primary care settings to support timely diagnosis and consistent access to services.Service models should recognize patient-developed self-management strategies as integral components of long COVID care, rather than treating them as informal practices.Coordinated care pathways and built-in navigation support are needed to reduce the disproportionate burden of self-advocacy placed on individuals navigating fragmented long COVID services.Rehabilitation services should incorporate equity-oriented and culturally informed design, including flexible delivery options such as tele-rehabilitation, to improve access for marginalized populations. Rehabilitation services for people living with long COVID should be designed around pacing-centred and energy-management approaches that reflect fluctuating functional and cognitive capacity. Symptom-based assessment and documentation practices are needed across rehabilitation and primary care settings to support timely diagnosis and consistent access to services. Service models should recognize patient-developed self-management strategies as integral components of long COVID care, rather than treating them as informal practices. Coordinated care pathways and built-in navigation support are needed to reduce the disproportionate burden of self-advocacy placed on individuals navigating fragmented long COVID services. Rehabilitation services should incorporate equity-oriented and culturally informed design, including flexible delivery options such as tele-rehabilitation, to improve access for marginalized populations.

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