Illness Experiences in Young and Middle-Aged Patients With Dilated Cardiomyopathy on Chinese Social Media: Qualitative Study

Background: Dilated cardiomyopathy (DCM), characterized by ventricular dilation and systolic dysfunction, has a 10-year survival rate of 25%. The number of young and middle-aged patients with DCM is increasing, with progressive physical limitations and psychosocial distress substantially impairing quality of life. However, illness experiences in this population remain underexplored, particularly in non-Western contexts. Social media platforms such as Zhihu and Weibo offer a novel avenue for exploring patient narratives and peer support. Objective: A qualitative descriptive study was conducted to explore the multidimensional experiences of young and middle-aged Chinese patients with DCM through the social narratives shared on social media. Methods: A qualitative reflexive thematic analysis was conducted on 872 questions and responses from Zhihu, a Chinese Q&A platform. Data were extracted using a Python (Python Software Foundation) application programming interface, manually filtered, and analyzed with NVivo 14.0 (Lumivero). Thematic codes were developed iteratively, with researcher reflexivity and team discussions ensuring analytical rigor. Results: Five themes emerged: (1) bodily control loss (persistent sleep disturbances, severe respiratory compromise, and physical activity limitations), (2) enmeshed in emotional turmoil (anxiety over survival challenges, guilt over burdening family, and heterogeneous responses to death), (3) social and family role disruption (impacts on academic and career paths and family responsibility interruptions), (4) support needs in health care (urgent demand for information on diseases and treatments and desire for continuous care and guidance), and (5) life reconstruction—between disease and life (lifestyle modifications, exploring diversified treatment paths, peer support and experience sharing, and reconstructing the meaning of life). Conclusions: This study provides an interpretive account of the intertwined physical, psychological, and social experiences of young and middle-aged patients with DCM in China, emphasizing the influence of life-course stage and sociocultural context. Patients’ perceptions of family responsibilities, societal role expectations, and death shape their understanding of illness and their processes of meaning reconstruction. These findings underscore the importance of incorporating life-stage and culturally sensitive perspectives in future research and highlight the potential value of tailored psychological support and digital health platforms in improving access to illness-related information and ensuring continuity of care.