Supporting the psychosocial well-being of patients with Long COVID: patient-informed strategies from a qualitative study

Background Long COVID, an illness characterized by long-lasting symptoms following SARS-CoV-2 infection, exacts a substantial toll on psychosocial well-being and overall health. Persistent physiological symptoms and associated experiences can negatively impact employment, daily functioning, identity, and social relationships. However, there is a gap in the literature on patient-derived recommendations for addressing the psychosocial impacts of living with Long COVID. Objectives This study aimed to identify factors shaping the psychosocial well-being of individuals with Long COVID and elicit patient-generated strategies for addressing them. Methods We conducted semi-structured individual interviews and Community Advisory Team (CAT) focus groups between November 2024 and June 2025 with 19 individuals who self-reported experience with Long COVID. Interviews and focus group meetings were recorded, transcribed, and qualitatively analyzed to identify factors influencing psychosocial well-being and participant-generated strategies for addressing them. Results Three primary factors negatively influencing patient psychosocial well-being were identified: identity disruption , isolation , and uncertainty . Identity disruption was described as a combination of shifting capabilities and a loss of self-reliance. Isolation centered around reduced social participation and experiences being dismissed, doubted, or misunderstood. Uncertainty focused on the illness and treatment pathways, navigation of healthcare and disability systems, fluctuating symptoms, and an uncertain life trajectory. Participants identified strategies including case management, structured peer support, Long COVID awareness campaigns, and personal practices supporting adaptation and acceptance. Conclusion Effectively treating and supporting Long COVID patients requires consideration of their broader state of psychosocial well-being and how it is influenced by identity disruption, isolation, and uncertainty. The impact of interventions targeting these specific factors should be studied to guide future intervention implementation.