Self-management experiences of Chinese patients with inflammatory bowel disease: Patients’ perspective

As inflammatory bowel disease (IBD) is a chronic condition without a cure, effective self-management is critical to the well-being of affected individuals. However, there is a notable gap in research concerning the self-management experiences of patients with IBD in East Asian countries. The purpose of this study was to explore the self-management experience of Chinese patients diagnosed with IBD. Employing a descriptive qualitative research design, this study utilized a purposive sampling method with a maximum variation strategy to select IBD patients from specialized outpatient departments and inpatient wards in Hangzhou, Zhejiang Province. Data were collected through semi-structured interviews and subsequently analyzed using conventional content analysis until thematic saturation was reached. A total of 27 patients with IBD were interviewed. The data analysis yielded 3 themes: self-management awareness (progressing from a perceived lack of need for management to understanding it as organizing examination results and a lifelong skill), self-management practice (comprising medication management, daily life management, emotion and stress management, job selection and adjustment), and self-management reflection (characterized by patients becoming their own "half a doctor," partnering as "comrades-in-arms" with specialists, and controlling IBD instead of being controlled by IBD). Patients' comprehension and capacity for self-managing IBD are directly linked to their lived experience with the disease. In the initial stages of IBD, patients typically exhibit insufficient awareness of disease management. However, they progressively develop greater self-management competency following the onset of disease-related complications. It is recommended that health professionals provide individualized self-management education and training tailored to patients' needs across different stages of the disease, while also mobilizing family and societal support systems to aid patients in their self-management efforts.