Self-management experiences of patients with systemic lupus erythematosus in China: a qualitative study

OBJECTIVE: This study aimed to investigate the self-management experiences of individuals living with systemic lupus erythematosus (SLE) through the lens of the Capability, Opportunity, and Motivation-Behaviour model to inform the design of personalised self-management interventions. DESIGN: A phenomenological method, common in qualitative research, was used. Data were collected using semistructured in-depth interviews. Data collection and analysis were conducted concurrently, guided by the principle of reaching data saturation. The data were evaluated using thematic analysis. SETTING: The study was conducted in a quiet, private setting, either a classroom or consultation room, free from external disturbances. PARTICIPANTS: Between March and September 2023, 15 individuals diagnosed with SLE who met the inclusion criteria participated in the in-depth interviews. RESULTS: A total of 15 patients were interviewed, and 3 themes and 9 subthemes regarding self-management experiences were extracted: (1) Capability level: Deficiency in disease knowledge and insufficient self-management skills; (2) Motivation level: Lack of self-management awareness, perceived benefits and risks, uncertainty about disease progression and appearance-related anxiety; (3) Opportunity level: Family understanding and support, social support and environmental facilitation. CONCLUSIONS: SLE patients' self-management behaviours are influenced by both personal experiences and external environments. Healthcare professionals should enhance health education, deliver individualised guidance, strengthen patients' self-management awareness and psychological positivity, optimise medical resource allocation, and bolster social support to improve patients'self-management capabilities.