Ortega-Martin Esther, Alvarez-Galvez Javier
Department of General Economy (Health Sociology Area), Faculty of Nursing and Physiotherapy, University of Cadiz, Cadiz, Spain.
Computational Social Science DataLab, University Institute for Sustainable Social Development, University of Cádiz, Jerez de la Frontera, Spain.
Health Expect. 2025 Jun;28(3):e70290. doi: 10.1111/hex.70290.
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.
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.
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.
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.
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.
长期新冠对患者的日常生活产生了重大影响，但西班牙在这方面的定性研究仍然匮乏。本研究旨在：（1）探究患者的经历及其面临的障碍；（2）分析获取准确信息方面的挑战；（3）通过详细考察生活质量的各个维度来评估其受到的影响。
对西班牙23名长期新冠患者进行了半结构化访谈。进行了主题分析，调查需求、日常生活中的障碍、获取和理解健康知识方面的挑战及其对生活质量的影响。
最常见的症状是慢性疼痛和运动后疲劳。所有患者在日常生活中都遇到了限制，这往往会带来经济后果。由于缺乏正式诊断，未得到认可以及法律上的不确定性进一步损害了他们的经济稳定性。污名化和社会理解不足导致孤独感和痛苦情绪，加剧了疾病的总体影响。医疗碎片化、缺乏随访以及缺乏协调的多学科治疗限制了专科治疗和健康信息。因此，许多患者从在线社区寻求信息和支持。然而，错误信息、信息过载或相互矛盾的信息造成了混乱，影响了他们对疾病管理的决策，进而影响疾病管理和生活质量。
长期新冠的影响超越了身体健康，还涉及经济压力、法律不确定性和医疗碎片化。我们揭示了错误信息和缺乏指导如何加剧了获取可靠信息方面的不平等。这些发现强调了需要综合护理模式、政策认可和针对性策略来减少社会经济不平等。
本研究扩展了关于西班牙长期新冠患者经历的知识。他们在医疗系统中的历程以及面临的挑战是分析和研究结果的关键。患者协会支持招募工作，以确保有广泛的观点。
