Uncertainty and its related coping strategies in systemic lupus erythematosus. Life in the fog

Background: One of the most prevalent problems of patients with systemic lupus erythematosus (SLE) is the uncertainty over an indefinite future. Uncertainty has significant effects on quality of life. The aim of this study was to explore uncertainty and personal strategies to cope with it among patients with SLE.

Materials and methods: This qualitative study was conducted in 2020-2021 using conventional content analysis. Participants were 21 patients with SLE who were purposefully selected from rheumatology clinics in Kashan, Kerman, and Bandar Abbass in Iran. Data collection was performed using face-to-face, in-depth, semi-structured interviews and was continued up to data saturation. Data were analyzed concurrently with data collection through conventional content analysis approach proposed by Graneheim and Lundman.

Results: Two main themes, namely, "life in the fog" and "attempt to find peace" emerged from patients' experiences of illness uncertainty of SLE. Life in the fog included three main categories of "perception of threat to health", "challenge of doubt and certainty," and "indefinite future." Attempt to find peace included three main categories of "spirituality," "reflection," and "attempt to acquire SLE-related knowledge.

Conclusions: Uncertainty is a major psychological stress for patients with SLE. Healthcare providers should therefore consider the challenges and concerns faced by patients and, through utilizing appropriate training and communicational practices, plan interventions and strategies to empower patients for coping with uncertainty.