Living With Long COVID: Everyday Experiences, Health Information Barriers and Patients' Quality of Life

Abstract

Background: Long COVID has considerably impacted patients' daily lives, yet qualitative insights in Spain are still scarce. This study seeks to (1) explore patients' experiences and the barriers they face, (2) analyse challenges in accessing accurate information and (3) evaluate the effects on quality of life by examining its dimensions in detail. Methods: Semi-structured interviews were conducted with 23 participants in Spain with Long COVID. Thematic analysis was performed, investigating needs, obstacles in daily life, challenges in obtaining and understanding health knowledge and its effects on the quality of life. Results: The most frequent symptoms were chronic pain and postexercise fatigue. All individuals encountered restrictions in their daily lives, which often had financial consequences. A lack of recognition coupled with legal insecurity due to the absence of a formal diagnosis further compromised their economic stability. Stigmatisation and poor social understanding led to feelings of loneliness and distress, adding to the overall impact of the disease. Health fragmentation, lack of follow-up and absence of coordinated multidisciplinary treatment limited specialised treatment and health information. Therefore, many patients sought information and support from online communities. However, misinformation and information overload or contradictory information generated confusion, affecting decision-making about the management of their disease, affecting disease management and quality of life. Conclusion: The impact of Long COVID transcends physical health, pointing to economic pressure, legal uncertainty and fragmentation of care. We reveal how misinformation and a lack of guidance intensify inequities in access to reliable information. These findings underscore the need for integrated models of care, policy recognition and targeted strategies to reduce socio-economic inequalities. Patient or Public Contribution: This study expands knowledge about the experiences of people with Long COVID in Spain. Their journeys in the healthcare system and the challenges they face are key to the analysis and findings. Patient associations supported recruitment to ensure a broad range of viewpoints.