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.

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Publication Details

Journal
Disability and Rehabilitation
Published
2026-08-14
DOI
https://doi.org/10.1080/09638288.2026.2715082
Primary Topic
Long-Term Effects of COVID-19
Type
article
Field-Weighted Citation Impact
0.00

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article

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

Behdin Nowrouzi‐Kia, De‐Lawrence Lamptey, Victor E. Ezeugwu, Thinuri Welithotage et al.
Disability and Rehabilitation
Long-Term Effects of COVID-19
article

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

Behdin Nowrouzi‐Kia, De‐Lawrence Lamptey, Victor E. Ezeugwu, Thinuri Welithotage, Kimberly Flowers, Geoffrey Maina, Minahil Haq, Yunxi Piao
article en

Abstract

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.

Disability and Rehabilitation
University Health Network (CA), Centre for Addiction and Mental Health (CA), University of Alberta (CA), University of Toronto (CA), American Physical Therapy Association (US), Prince Albert Grand Council (CA), Toronto Rehabilitation Institute (CA), Holland Bloorview Kids Rehabilitation Hospital (CA), Krembil Research Institute, Bloorview Research Institute (CA)
Canadian Institutes of Health Research
Reduced inequalities
Openalex Percentile: Top 10%
Long-Term Effects of COVID-19
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